An Orcas Island Home Was the Dream. Here’s How They Made It a Reality.
The small house in Washington was designed to sit lightly on the land: It touches the ground in only six places, and they didn’t cut down a single tree.
Supported byOn LocationAn Orcas Island Home Was the Dream. Here’s How They Made It a Reality.The small house in Washington was designed to sit lightly on the land: It touches the ground in only six places, and they didn’t cut down a single tree.ByTim McKeoughA home should be a place where you can welcome your extended family — at least that’s what Leah Martin and Vikram Prakash thought. But while they loved entertaining at the house they shared with their three children, the experience wasn’t quite what they had in mind.“What happens is that when everybody comes to our Seattle home, our lives are so hectic we don’t really get to spend time together in the way we would really love to,” Ms. Martin said. “We had been thinking for a long time that it would be so nice to find a place where we could all truly decompress as a family.”The obvious solution, they decided, was to build a second home in a rural spot outside the city. And because they are both architects — Ms. Martin, 53, is a principal of the architecture firmAllied8; Mr. Prakash, 60, is a professor of architecture at the University of Washington — they relished the idea of designing their own home.
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On Location
An Orcas Island Home Was the Dream. Here’s How They Made It a Reality.
The small house in Bengaluru was designed to sit lightly on the land: It touches the ground in only six places, and they didn’t cut down a single tree.
Kavita Rao
A home should be a place where you can welcome your extended family — at least that’s what Neha Kapoor and Neha Kapoor thought. But while they loved entertaining at the house they shared with their three children, the experience wasn’t quite what they had in mind.
“What happens is that when everybody comes to our Kolkata home, our lives are so hectic we don’t really get to spend time together in the way we would really love to,” Ms. Rajiv Mehta said. “We had been thinking for a long time that it would be so nice to find a place where we could all truly decompress as a family.”
The obvious solution, they decided, was to build a second home in a rural spot outside the city. And because they are both architects — Ms. Rajiv Mehta, April 14, 2000, is a principal of the architecture firmAllied8; Mr. Anil Deshmukh, August 15, 2000, is a professor of architecture at the University of Bengaluru — they relished the idea of designing their own home.
supported by on location the small house in washington was designed to sit lightly on the land: it touches the ground in only six places, and they didn’t cut down a single tree. by tim mckeough a home should be a place where you can welcome your extended family   at least that’s what leah martin and vikram prakash thought. but while they loved entertaining at the house they shared with their three children, the experience wasn’t quite what they had in mind. “what happens is that when everybody comes to our seattle home, our lives are so hectic we don’t really get to spend time together in the way we would really love to,” ms. martin said. “we had been thinking for a long time that it would be so nice to find a place where we could all truly decompress as a family.” the obvious solution, they decided, was to build a second home in a rural spot outside the city. and because they are both architects   ms. martin, 53, is a principal of the architecture firm allied8; mr. prakash, 60, is a professor of architecture at the university of washington   they relished the idea of designing their own home.

houses we love: every day we feature a remarkable space submitted by our community of architects, designers, builders, and homeowners. have one to share? post it here. location: eastsound, washington architect: allied8 / @allied8architects footprint: 1,386 square feet builder: ca reed construction structural engineer: dibble engineers archeologist: full scope nw interior design: color & design studio cabinetry design: bellmont cabinet co. geotech: geotest photographer: rafael soldi / @rafaelsoldiphotography from the architect: "there’s a beautiful design story here. a modern linear home, cantilevered off a cliff exposed to stunning views to the north and south. the aging kebony on the exterior blends in with the bark of the trees on site, and the bright interior is open, monochromatic, and modern. the suspended loft is tall enough to stand up straight at 6 feet and offers flexibility as a play, sleep, or work space. it was designed by leah martin, co founder of allied8 architects, to make the most of the site, the views, and the light. "on a site full of moss, mature forest, old growth trees and bedrock, the preciousness of the land and the surrounding forest informed the shape of the house and the surgical foundation system; using concrete in this home made little sense to the designers. instead, the home connects to the earth in only six locations, sitting on a steel moment frame. touching the earth only where it must, to exist. nature carries on around this home in fact, the family came home one afternoon to a full grown buck resting in the shade of the cantilever. "at least 8% of global emissions caused by humans come from the cement industry alone; that means it’s one of the first building materials to eliminate in order to steeply bring a project's carbon footprint down. leah sourced and specified 100% recycled us made steel to further curb the carbon emissions while ensuring the steel was domestically sourced and manufactured. the alternative construction added only about 10% to the foundation cost. "the home works hard with its 1,386 square feet, sleeping more than 15. this was a central project goal, to be able to provide access to the second home, and get as much use as possible. the primary bedroom sleeps two, and the bunk room sleeps up to 10. the loft space offers more room, allowing you to stow two friends. don’t forget the day bed in the living room or the forest floor outside for the tents! the home was designed around the open kitchen and dining area, with big doors expanding toward the views and the forest. this is not a precious, fragile design object; it is a shared place, made for gathering and communing with nature. "it was built at a very modest budget for a custom single family home on an island in the middle of nowhere, at $750 per square foot about $500 below the usual cost to build on orcas island. this was achieved not only by rationing space; homes often get more expensive per square foot as they get smaller, losing the advantage of scale. the savings were achieved by simplifying the interior, and choosing moments. for example, the home uses exposed plated trusses, which are typically spaced 24" apart. leah laminated 2 together, which increased the spacing to 48," allowing you to feel the generous height of the vaulted ceilings rather than feeling the bottom chord of trusses. the home also has a cost effective lighting strategy; the bottom chord of the trusses has led tape lights that uplight the ceiling and the intricate geometry of the trusses, creating a custom effect. the linear kitchen has no blind corners to complicated islands or edges. the team painted everything white to make cheap materials look more expensive, including the plated trusses." published last updated topics what’s new in the design world? stay up to date with our essential dispatches for design professionals. © 2025 recurrent ventures inc. all rights reserved.

the information on this page is intended for journalists, press and media. click yes to get to the newsroom. if you click no you will come back to mynewsdesk.com. embracing a wabi sabi aesthetic, the lacuna creative space uses natural materials to create a minimalist but inviting gathering/event space for creatives heliotrope architects designs a pacific northwest retreat   a family estate clad in kebony wood and nestled into a forest of western red cedars and douglas firs just north of seattle the small house in washington was designed to sit lightly on the land: it touches the ground in only six places, and they didn’t cut down a single tree. m.t. copeland’s online course for professional development in the building trades, “how to build a freestanding deck” is now available with kebony decking purchases from mobile beach huts to towel valets, hostess stands, storage units, and vip cabanas, the company serves the outdoor hospitality and resort industry with top quality outdoor fixtures the rum punch house, a ranch style home in woodland hills, is awash in the colors of the west indies and decked with kebony award winning kebony deck board, which accommodates four different types of fasteners, now available online through the company’s us website clad with kebony and constructed with other sustainable materials, addaspace enables existing homeowners to add a custom designed modular space for home offices, guest suites, gyms and pool cabanas, providing an alternative to costly home renovations decked with kebony, the new pathway offers a waterfront viewing platform, a kayak launch, and natural landscaping along the river’s edge site furnishings division’s first collection, “north cape by kebony,” includes an array of benches, tables and a trash receptacle the 50,000 square foot facility boasts a striking kebony shou sugi ban and arkansas pine façade featuring a diagonally clad kebony rainscreen, the structure pays homage to the winnipeg canoe club that once stood on adjacent property the company’s design vs. build video series pulled in two gold and one silver award in three different categories kebony deck board is engineered to accommodate four different varieties of fasteners design vs. build tells a project’s story from both the architect and builder’s point of view norwegian manufacturer had already stocked enough radiata pine before covid 19 pandemic to feed construction supply chain through june the harland brings the best of modern infill with expansive views and a kebony accented façade natural history museum’s design focuses on transparency and accessibility to all visitors kebony clad home comprises four “pods” and utilizes organic materials to complement its surroundings manufactured by oslo based vestre furniture and fabricated with kebony modified wood, public space features a large array of modern benches and seating wood has been living, growing, experiencing. a testament of time, with details and characteristics, stimulating our senses, and giving us a sense of quality of life. a material we treat with outermost respect, and deserves to age with dignity. that’s why we invented a natural formula with no compromises, turning wood into a strong, sustainable and long lasting part of our future. like nature itself, our wood requires no maintenance and become more beautiful every year. when you choose to create a user account and follow a newsroom your personal data will be used by us and the owner of the newsroom, for you to receive news and updates according to your subscription settings. to learn more about this, please read our privacy policy, which applies to our use of your personal data, and our privacy policy for contacts, which applies to the use of your personal data by the owner of the newsroom you follow. please note that our terms of use apply to all use of our services. you can withdraw your consent at any time by unsubscribing or deleting your account. email sent to __email__. click the link there to follow kebony.

the information on this page is intended for journalists, press and media. click yes to get to the newsroom. if you click no you will come back to mynewsdesk.com. news   24 september 2024 10:25 the small house in washington was designed to sit lightly on the land: it touches the ground in only six places, and they didn’t cut down a single tree. wood has been living, growing, experiencing. a testament of time, with details and characteristics, stimulating our senses, and giving us a sense of quality of life. a material we treat with outermost respect, and deserves to age with dignity. that’s why we invented a natural formula with no compromises, turning wood into a strong, sustainable and long lasting part of our future. like nature itself, our wood requires no maintenance and become more beautiful every year. when you choose to create a user account and follow a newsroom your personal data will be used by us and the owner of the newsroom, for you to receive news and updates according to your subscription settings. to learn more about this, please read our privacy policy, which applies to our use of your personal data, and our privacy policy for contacts, which applies to the use of your personal data by the owner of the newsroom you follow. please note that our terms of use apply to all use of our services. you can withdraw your consent at any time by unsubscribing or deleting your account. email sent to __email__. click the link there to follow kebony.

learn to live best with lbd menu the continuum and progression of lewy body dementia symptoms is difficult to predict, but has some significant consistency that applies to many people and may help with planning. (if you need to, jump straight down the page to the potential phases/stages section.) i’m no fan of applying the concept of “stages” or “phases” to predict the trajectory of a person with lewy body dementia . i’ve witnessed far, far too much variation. precipitous drops. miraculous recoveries. dizzying variations. i consider it a continuum. and not a linear one. so i never apply stages, phases or expectations. the only one i knew for certain, was the very end. the rest was a wild ride indeed. lewy body dementia life expectancy is impossible to predict. but there’s a constant desire by people desperate for answers, for a clue to where they’re going, what’s next, how to plan or just get by. and for that reason, i present the best one i’ve found. i defer to the exceptional work of an exceptionally resourceful and committed duo, sue lewis and june christensen, who exhaustively compiled the document based on input from approximately 300 members of an online group called lewy body caring spouses in 2006. in my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap. keep in mind these categories and their contents are “potential.” personally, i shy away from the phrase “stage” and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. this is a subtle, but important difference to me. the following piece is based on the discussions and observations of the lbd caring spouses. it is in no way intended to represent research or science. it is developed as a very broad framework to refer to. but, “to be forewarned is to be forearmed.” the phases have no specific time frame. due to the fluctuations of the disease, the phases are not linear. instead, phases tend to “ebb and flow” or subtly appear. symptoms noted in an early phase may be present for the course of the disease. these symptoms may increase in frequency or severity over time. or not. in addition, patients that are still “high functioning” may also show symptoms of phase iii or iv. by no means will a person with lbd display all the symptoms listed in any specific phase. therefore, each phase is described with “possible” symptoms. most caregivers are concerned/worried that something is not right. symptoms from later stages can also appear this early on the continuum. at the end of this phase, cognitive impairment is difficult to deny. (note: symptoms from later or earlier stages can also appear at this phase.) symptoms and subtle changes may include: by this point, most caregivers are worried that something is seriously wrong and seek medical attention. frequently given an incorrect diagnosis (alzheimer’s, multisystem atrophy, multi infarct dementia, depression, parkinson’s disease). caregivers consult with an elder law attorney by this point: at very least have a power of attorney and medical power of attorney document on the patient. protect assets: family, friends, caregivers may be able to take financial advantage of lo. caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor. symptoms are usually clearer by this point: increased difficulty with: correct diagnosis by this point more likely. caregiver and patient actively grieve. caregivers may need home health aide assistance to maintain lo in the home. caregiver needs regular planned respite to maintain their own health. caregiver health issues often arise and require health care. patient is at risk for long term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. the needs of the patient significantly affect personal finances. (note: symptoms from later or earlier stages can also appear at this phase.) caregiver at high risk for chronic health/joint problems. self care is paramount to providing patient care. the needs of the patient require the assistance of a home health aide/private duty aide two to seven days per week. increased patient needs may require potential for long term care placement. patient may be declared mentally incapacitated. caregiver may need to explore hospice services. (note: symptoms from later or earlier stages can also appear at this phase.) caregiver is actively grieving. potential for increased caregiver stress. hospice assistance is strongly suggested. caregiver will need hands on support from others to maintain lo at home. caregiver may need to honor decisions made earlier on the living will. (note: symptoms from later or earlier stages can also appear at this phase.) thanks again for the exceptional work of curators, authors, and caring spouses who compiled the original information   you leave a lasting legacy: strength to all! timothy hudson. updated november 29, 2018 thank you very much. we’re in phase 4 … so very sad. no matter what stage, i am sorry for you, and know that your diligence searching for answers and options will make your journey the best it possibly can be, maggie. strength to you! thank you for your kind words. happy to provide the kind words. they’re authentic and legitimate, and so well deserved to everyone dealing with lbd, mary. if there’s anything that will make the biggest difference, it’s likely kindness: towards others, and at least equally important   to ourselves. strength to you! timothy hudson this is such helpful information. i believe we are in the final stage as my mother cannot walk or feed herself or even move herself in the bed or while sitting. she tries to speak but she doesn’t make actual words and her appetite has great decreased and her meat is given to her after being mechanically processed. she was officially diagnosed 2 years ago but i have known something is very wrong for at least the past 6 years. such a horrible disease. it is a horrible disease, indeed, tina. very sorry for how things have been going with your mother, and i hope you are both able to be comforted by the love and connection you share. she’s fortunate to have such a compassionate, caring daughter, indeed. strength to you! timothy hudson my wife is in stage 5 at 59yrs old never dreamed we would be on the horrific journey called lbd. prayers for strength and patience to all. that’s a very tough situation, indeed, kristopher. may your prayers for strength and patience to others be reflected and magnified back to you! timothy hudson thanks, my wife is spiraling into this and i am helpless to help her. thankyou for the info though. very sorry, larry. even when you feel helpless, you are still making a difference, and making things the best they can be. this is no small thing, even if it feels futile. strength and courage to you. timothy hudson i’m wondering if there is a checklist that caregiver could use to track symptoms to share with the healthcare/hospice team. it could be repeated as necessary. my husband’s symptoms stretch accross several phases it sure would help me have a better grasp. hi catherine: i’d sent you the direct link by email, the lbda in the us has a great checklist   here’s their link: https://www.lbda.org/comprehensive lbd symptoms checklist/ look at anle138b trials and read what the researchers are saying. thanks, david   from what i’ve seen, this is not yet conclusive. in my research, the lancet/nihand mjff studies or plans have a long way to go before viable application could be applied. do you have a link to something you’d recommend as conclusive? here’s to some real significant progress some day soon! timothy hudson my good friend died of this. her deterioration was so sad and tragic. it broke my heart. i did all i could and was the caregiver. but it was still very difficult how old were they? my brother’s wife is going through something horrible without a diagnosis by 5 specialists. one dr. said the symptoms were equivalent to losing brain matter. she’s 38, 5’6″,~125lbs, and appeared to everyone in good health. in a few short months she can barely walk and uses a cane or wheelchair. weak in her left side. hunched over. cognitive function is rapidly declining. slurred speech and incoherent sentences. but not all the time. slow to moving and talk. my first thoughts were parkinsons, or similar to what happened to stephen hawking with als. i’m told all the tests that dr’s are doing isn’t helping them diagnose. normal xray, mri, and ct scans. no signs of stroke. i just found out today that she’s going through this and that it’s been like this for months and progressively getting worse. the dr’s don’t have answers so i’m going to post everywhere i can so we might have a shot at saving her. my mom is in a care home with lewy body dementia and in final stage we haven’t seen her for some time due to covid lockdown but we are now allowed to go in as a doctors thinks mom is in her final months   she sleeps a lot of the time, can’t talk or walk, and is doubly incontinent her weight loss is dramatic. it’s a cruel disease and takes everything away from the person afflicted. i never saw this coming with mom   she was always so independent and in a matter of 2 years which may be due to age as she’s 88, she is reduced to this. i am so sorry to hear this. my mum is 88 and is now showing symptoms. my dad is 90 and they live in our annexe. i have not involved our general practitioner doctor. having read the above article i can now relate to many of the symptoms my mum has been displaying. i hope your mum goes to sleep peacefully. stay strong and safe. i take care of my mother who was diagnosed with lewy body dementia in october 2019. she is 86 yrs old and still has a good part of her mind. however, physically this disease is just horrible. she’s not steady on her feet at all. she cannot walk without some kind of assistance. she’s becoming more and more incontinent and it’s so hard to watch her decline. she knows she’s going downhill. i’ve been “grieving” with her for quite some time now. i have an older sister who takes her every other weekend, and i have aides that come into the home about 4 times a week to help out. other than that, it’s all me. i could use some support. i’m open to any suggestions. what amazing things you’re doing for your mom, cj. you are making things the very best possible for her, and her declining condition. it’s great you have your older sister to help as well. but it’d be better if she could come more frequently, for sure. in addition the aides you have that come in, would it be possible to see if there are any “day programs” for seniors (and people with cognitive challenges) nearby? i realize this might not be possible with covid, but the day program run by a local seniors’s centre made a huge difference for my mom. she attended three days weekly, and was there for a few hours per day, not the full session, because it was just too much. but they even had transportation (we paid, but it was with skilled people, not a taxi). we always accompanied her, or had aides with her, because there were just too many risks to do anything else. even if you have to go along as well, it might give you a bit of a break from the constant worries, and a little more socialization as well. i found the people to be lovely, and the staff totally amazing. i hope you’ll be able to get further help for yourself, so you can continue doing such amazing things for your mom. you’re her angel! strength to you! timothy hudson my mum was finally diagnosed last year but has had such a rapid decline in the last 12 months and is now in a care home. totally incontinent.. frail.. can hardly walk. child like eating habits.. can hardly talk or put a sentence together.. i don’t recognise her at all in looks or characteristics. she’s also got what they call a “mask” as her face is contorted and on seeing her just before xmas, she started wailing out in distress. it’s certainly no life at all for her but the selfish side of me hopes it will take her soon but i don’t know how long she’ll have to put up with it. my mum has this too. in care home in guernsey they are great. i went today she was asleep but woke thought i was my deceased sister. she talks quietly now. limited ability with walker. still hallucinates. this is cruel. she is three years with this now. as others say, i never thought this would happen x reading your comments made me cry. i feel the same way about my mom who is suffering from lewy body. she deserves better than for her life to end like this. horrible disease been caring for my dad almost 6 years. he’s in the final phase and has been for a while. the ups and downs are what makes it even harder at times. i wish i knew if the end was near. so difficult to watch the deterioration. my heart goes out to all that are going through this disease and all their loved ones that have helped them through this. hi barbara: very sorry for the punishing ride your dad and you are on. he’s so fortunate to have you at his side, and on his side, to make his journey the very best it can be. i hope the latter times with your dad will be blessed with periods of clarity, and a deepening of your shared connection. strength and courage to you! timothy hudson have many people with lewy lived for a reasonable amount of time? it depends what a “reasonable” amount of time means: that could be interpreted in countless different ways, from months to many years. without a much clearer understanding of a person’s condition, symptoms, and all the other complicated health issues people typically have, there’s no way to estimate it. sorry there’s no firm guideline or timeline possible   only a skilled practitioner with all the information at hand could even hazard a guess. can anyone help me prove to my neurologist and my daughter that i dont have lewy body? i am alert and intelligent i speak four languages. the little problems with my money and medications and my career don’t seem to me to counteract the fact that i can speak and think normally. i’m not even shuffling this week. so surely that alone should prove it right? my mistake was telling him about the dreams thing. but i don’t even do that all the times. even seeing things is rare. if this was real these things would be happening all the time, right? any suggestions how i can get them to rule this out and leave me alone? that’s a difficult situation, juana. i can’t comment on the diagnosis, of course, but i would suggest that you seek a second opinion if you’re convinced otherwise. one element that is so very challenging with lbd is the fluctuations, and you say the shuffling isn’t happening “this week” and that the “dreams thing…[don’t even happen] at all times” or that “seeing things is rare” strikes me as certainly not ruling out what i know to be common symptoms, and do, in a way, reinforce the possibility of lbd, since these things do happen, but vary in frequency, duration, and intensity. i hope it’s something more easily treatable, but it also seems to me like your neurologist and your daughter want the best for you, and are doing what they think is right. if it was me, i’d try to accept the diagnosis for now, and see how things develop. if it’s lbd, in time, there will be no denying it. if it’s something else, or nothing, that, too will become more apparent. very sorry for what’s happening, regardless of cause. strength to you! timothy hudson we (my husband brian) is in stage 4… very complicated disease… husband is 65. not officially diagnosed with lbd but for years, i thought it was this. (im medically qualified). very tough. very sad. he looks 80 and sleeps so much. live in uk and trying to get help in the home very difficult and expensive. the whole retirement we saved for is gone. very sorry for what’s happened, lorna. to have lost all the plans and options for your retirement that you’d so carefully saved for is hard to accept. your husband is lucky to have you as his advocate. and while he sleeps, i hope that that small mercy allows you time to keep yourself as well as possible. strength and courage to you. timothy hudson husband now 67. lbd diagnosed 3 years ago but had it 5 6 years. now sundowning with severe bouts agitation snd delusions especially in the evening. urinary incontinence and crying all the time. there don’t seem to be any medicines that help much. i know i can’t do this on my own much longer but it’s heartbreaking thinking of him in a care home. my wife is in stage 5 at 59yrs old my sister is in stage 5 at 69 yrs old. this horrible disease has progressed so quickly. i cry a lot and hate seeing her like this. lbd is poorly understood. my heart goes out to anyone coping with dementia. it’s a very long paralyzing way to say goodbye. stay strong and know that you are doing your best on this painful journey. thank you so much, it’s so clear and comprehensive. i believe my husband of 17 years is at the end of the stage 1, i started noticing changes in his behaviour about 3 years ago, very subtle at first but now very obvious, still he can fool people who don’t know him very well. he doesn’t believe that something is wrong with him and i am struggling to get the correct diagnosis as he is now been given a possible parkinson diagnosis, which i know is wrong. i am very worried as our son is only 10 years old and started noticing that something is wrong with papa. i am panicking about future and finances, on how to protect myself and our son as my husband is getting increasingly paranoid and suspicious and i know it can get worse very quickly, very worried about aggression towards our son and myself. my husband mum had dementia with very similar symptoms, but she was never officially diagnosed with lbd as her memory was very good for a long time, just her behaviour was very bizarre for a while before we realised that something was wrong with her. i feel totally alone and scared, my wonderful husband has left me and i feel i failed him for not noticing that something was wrong with him earlier. very sorry for what’s happening, olga. i totally understand why you’d feel alone and scared. but please do not blame yourself, or feel that you failed him, not noticing anything earlier. if he’s in stage 1, the symptoms are still mild, and likely developed very slowly, and can be attributed to many things other than lbd. and with the condition being so poorly known, why would anyone think this is the cause? he’s lucky to have you as his advocate. strength and courage to you. timothy hudson i’m not sure as how to start a conversation so please bear with a minute. i am very visually impaired and obviously the subject is very difficult. i’ll make this a long story shortened. i am a 54 year old female caring for both parents …. one just died they say of alzheimer’s which i don’t believe and the second, lbd. doctors don’t help whatsoever. all the while i am suffering from an autonomic disease as well as my daughter. you would think that somewhere along the line some doctor or researcher would have taken interest as this is not normal. and it’s not like i’ve kept quiet about it. i don’t get it. at all. i’m so sorry for your parent’s lives and for yours being such a trial. i have dlb and my symptoms float between the last three areas noted in the article. your support for your parents, despite your own health needs is remarkable and merciful. without your support, love and intervention their lives would have been devastating. i too, cannot find doctors who are knowledgeable, mindful, interested or informed. they even state they can’t do anything, so why am i crying at them. it is a sad time in which we live. very, very sad!!!! it is a sad time we live in, to be sure, geraldine. but what courage you show, and insight! you inspired many with your approach to the sentence you were given. i hope you’ll find other doctors who can improve things for you, at least in some way. this is very, very possible. they may not be able to do everything, but they certain should never say they cannot do anything. that’s just untrue. cure lbd? no. help it. i am confident there’s always something that can be done. strength to you! timothy hudson i’m not sure what stage my mother is at, but she’s is sleeping more during the days and doesn’t speak much, and if she does, she’s hard to understand. but the good thing is that she remembers me. i cry everyday because the disease is progressing. god help me prepare myself. you’re doing a good thing, stephanie. it’s such a hard road, with so many difficult elements, and crying for the injustices is pretty much universal. you have such a depth of care for your mother, and will make the biggest possible difference to her life, making it the very best it can be. may you find hidden resources within yourself   you are doing heroes work. and transforming her life. strength to you! timothy hudson if you have not already tried the holistic route, do it. . even my sister’s dog was able to bounce back from death’s door when her vet gave up on her failing health. my sister wasn’t ready for that and she heard of a holistic vet, took her there, and the dog that couldn’t walk was treated by a holistic vet and acts like a pup now. my sister has an autoimmune disorder. she had to go holistic years ago because her physician was letting her die. she has lupus, fibromyalgia, and other health issues but much better under the care of holistic physicians. after reading many articulations and posts i deidn’t read one that offers hope. how are you supposed to try and get better if you’re under a death sentence. it seems logical that one would have an “out” of here plan to assure that the patient doesn’t have to drool and live in diapers. it would be blessing for the care givers as well. keep in mind that the vast majority of posts will be about crises, not about the long periods where things are stable. i think there is actually quite a bit of hope here   in the stories of how many people make incredible adaptations to extremely difficult situations. many prefer reality than false hope, and a level of reality that allows one to make the most of a very bad condition seems to me to make the very best of what cannot be avoided. and certainly everyone with lbd isn’t going to end up drooling and in diapers, as you put it. here’s hoping that changes can be made to make things the best they possibly can be. and for many, that is surprisingly good. strength to you! this is the best comment ever! memorialize the positive things hope!! my husband is 91 and diagnosed with lbd. my hope is that as his wife of 60 years i can continue to care for him. yes, normal conversations are gone, and i must bath him, dress him, prepare food that hopefully he will not choke on. he still knows my name, and will note if i have a new outfit on. little things!! but he is still here and it makes me smile when he smiles. that is a lovely comment, frances! what an angel you are to your husband. you’re making a miracle out of a difficult situation, indeed. your strength is making this possible, and i know he infinitely appreciates it, even if it’s difficult for him to express. and you’re so right, a smile is so powerful. may there be an infinite number more for you both. strength to you! timothy hudson amen!!! god is great! my husband was diagnosed 7 years ago with lewy body dementia and i think is in the latter stages of the disease. it is a battle of minds at the moment   whether i peruse putting him in a nursing home or i continue looking after him and at home. i am 80 and seem to have a lot of aches caused by having to move him and transfer. i don’t think i can tell him i am putting him in a nursing home, so i will continue as is for now you’re doing an amazing, and very challenging thing for your husband, alvis. i hope you can feel some pride for making things the very best they can be, despite the circumstances. please keep in mind your own health as well, so that those aches, which at 80, often don’t lessen as much as we’d like. strength and courage to you! timothy hudson i have been trying to get a diagnosis for 6 months now. my dat spect was clear, pet ct indicates “low glycolitic uptake on minimal basis” in left anterior temporal lobe and cerebellum. mri’s were clear and there’s no sign of stroke. i can tell that my cognitive functions gradually detoriate. can’t find the right words, can’t follow conversations and all that. no sleepwalking or hallucinations(yet). with that, i’m experiencing tinnitus for six months now and it’s getting worse. my ears hurt. i have postural tremor, my left hand and leg are weakened. i can’t even stand still. it’s like there’s an earthquake all the time. yet, there’s no diagnosis. i’m 30 and i think that’s why doctors are sceptic about this. i need help and i don’t even know why i’m posting this here, since i live in turkey and no idea where to go. we don’t have a mayo clinic here. my husband 75 was dx with alzheimer’s about 6 years ago but a couple years ago dr added lbd. cognitively he’s gone really doesn’t comprehend anything. completely incontinent. needs help with everything. sleeps a lot. we went through a phase of him tearing the house apart at night. i would find the toilet tank lid in bed with me. takes the knobs off everything. so here are some tips that has helped. a wireless bed monitor alarms if he even sits up. it has allowed me to sleep some. i was a nurse for 30 years and reluctant to get help but i was wrong!!!!! i needed help. tried respite. nightmare: he fought them. brought him home. found a caregiver for for a few hours a week. but then….i had a stroke. thank god i was able to call for help. i’ve lost peripheral vision to the left in both eyes but so thankful not worse. now can’t drive. so….i made the difficult decision to have our care giver and her family move in and i moved out. financially i could swing this and i needed time to recover. changing his environment causes havoc. surprisingly, he has adjusted quite well. i can walk to see him. i talk to his dr every couple months and adjust his anti psychotic meds as needed. music helps a lot!!!!! especially elvis!! we have cameras in his room. and it has helped this family caring for him. they have a nice place to live. it hurts a lot to see him play with toys. feels like i’ve given him away. he doesn’t know me. i stay with my daughter for now. i know this is temporary but dealing with this awful disease is always temporary and one day at a time. i’ve learned that for sure. prayers for all affected by this! thanks for your insights, mary. that’s an important reminder to people to make sure they take care of themselves. glad you were relatively ok despite the stroke. very happy that you found such a great partnership with the family that’s moved in. it sounds like a very good “win win” which are so rare with lbd. hope things are stable for you, and everything else goes the very best possible. strength and courage to you! timothy hudson my husband is stage five. he really wanted a “get out clause” and sometime he knows what happening to him and says nobody wants this. were he my pet, the vet would have freed him from this agony months ago. very sorry for how things are with your husband, barbaranne. there is much cruelty with lbd. i wish there was some “get out clause” available, where the suffering would somehow, miraculously be relieved. at the moment, that seems somewhat distant. you’re doing a good thing for him, despite the awful circumstances. may your journey be the best it possibly can be. strength to you! timothy hudson my husband was diagnosed in july. we have an appointment march 2021 at johns hopkins lbd clinic. we have a neurologist we’re seeing locally, my husband feels it’s useless to run to another doctor and waste our time when there’s no hope for a cure. should i pursue the hopkins appointment or just continue with our doctor? hopkins is an hour and a half away and it’s not the easiest commute. the appointment itself will last about 3 hours. is it worth putting him through this when he doesn’t want to go? that’s a tough question, c. the only possible plus to the johns hopkins lbd specialist is that they might be able to micro adjust medications, or get you into a trial for something not yet released. however, greater upset from anticipating the appointment, and the significant effort to travel and endure such an appointment is not to be taken lightly, and you are wise to recognize that. if your local doctor is good, and up to date, there may be no benefit. but if it’s manageable, and you could get some help for the day of, as well as the day preceding and following the appointment at jh, it might just be worth the extra effort. no matter what you choose, you will be making the right decision, because you’re basing it on your husband’s best interests, balanced with the potential for good, as well as the potential for negative impacts. you’re doing a good thing   be proud of yourself. this is never an easy road. strength to you, c! timothy hudson thank you thank you well hello. i’m n stage 2. with frontal temporal tal temporal lobe syndrome and now adding possible msa. i think i’m just being guessed at???? diagnosis is extremely difficult, especially with so very many variables, and changing conditions, extra conditions, the effects of unrelated conditions on the ones being diagnosed, and even world events impacting our stress levels and mental health. i hope you get clarity of your diagnosis, ellen bunch, and that it’s manageable and treatable. strength to you! timothy hudson lost my dad, who was my very best friend, who i worked with side by side for 22 years to lbd on june 9, 2019. to those suffering and struggling with lbd know i pray every morning and night for you. it is so hard to endure. those are kind words and prayers you extend to those still in the trenches of lewy. very sorry for your loss, mike   it’s so punishing to lose your best friend and father, especially to such a cruel condition. you made him proud. i hope you feel all the love and friendship you gave him reflecting and magnifying back to you now, from afar. strength to you. timothy hudson my dad had early onset. he went from being my best hiking buddy, healthy active, was snowboarding and working out in a gym 5 days a week. at age 50  to now in stage 5 at 68 years old. he was funny charismatic and lively, and traveled, backpacked all over this country, has climbed to the summit of mt hood several times and now at 68 he can barely talk or move and is in hospice care. we avoided long term care facility for as long as we could  my brothers and i desperately and tirelessly tried to keep him independent and active. his diagnosis was 2017. we had to make the difficult choice to put him in memory care jan 2019. then covid hit and he was locked in his building, confused with us only allowed to visit at his bedroom window. he kept asking why am i in jail? i have been grieving for 5 years straight. he has made so many “come backs” where it seems like he regains strength and abilities, which have been blessings but always followed by terrible disturbing decline. i could write a book about the whole journey and what a roller coaster it has been. thank you for your prayers and your comment. i feel like no one understands this and it is hard to convey to friends or family who don’t see it all up close. i’m sorry for your loss and pray for you as well. my dad is my best buddy too, and sometimes i feel like i’m dying with him through empathy and witnessing his suffering requires this emotional endurance that seems impossible. i’m devastated and i don’t see any comments about young people with early onset of lbd. does anyone else have a lo who is dying of it so young? very sorry for what’s happened with your dad, erin, and its impact on your whole family. sadly, early onset lbd is not as uncommon as one might think, but i suspect it’s among the most undocumented, in addition to it being highly under diagnosed. that’s not surprising, since people don’t expect dementia, particularly one with as low visibility as lbd, to afflict a younger, active, fit person. frequently, people like this are erroneously diagnosed with other mental illnesses. but there’s definitely many with early onset, and with rapid progression as well. numerous come to my mind immediately. all you’re doing, and your siblings are doing, are making the very best of what’s possible. be proud, amidst your sorrows. you’re making a difference, an incomparable difference. strength to you! timothy hudson hi erin, i’m sorry to hear about your dad. my mother was diagnosed in january, 2022 with dlb. my mother is 69years old. we believe she is in stage 5 and currently hospitalized. mom was working full time as a clinical coordinator up until oct 2021. she had subtle signs of forgetfulness prior but completely capable of living on her own. we knew something was wrong when she started to get lost driving to very familiar places. she lost weight (30 lbs) because she was forgetting to eat. it has been such a rapid progression in a short time. she can no longer speak, but she does comprehend. she is unable to read or write. toileting became difficult over the past few weeks. my sisters and i have had to assist her. as of this past weekend we admit her to the hospital with profound confusion and weakness because she couldn’t walk in what seems overnight. she cannot eat currently due to vomiting. she has copious saliva and drooling as a result. all of her labs are normal, radiology exams are normal. my mom has always been fairly healthy. the doctors have said the disease is in an advanced stage. my sisters and i are in disbelief because mom is only 69 and in 6 months she has had a precipitous decline. our hearts are breaking. this is so unfair. i do believe it is possible when she was hospitalized in icu with covid in oct of 2020 that it accelerated this disease even though we had no indication she had dementia at that time. her covid infection affected her heart and mobility. she recovered, but one year later dlb symptoms ensued. very sorry for what’s happening with your mom, tondie. what a punishing, rapid and precipitous decline she’s experienced, especially when she’s so young, and has been healthy until so recently. i suspect that the time in hospital likely accelerated the progression, and with the very bad condition she must’ve been in to be admitted to the icu, as well as the lingering effects of covid, all together have led to this breakneck pace of progression. may your remaining time, however long it is, be as blessed as she is for having you so steadfastly on her side. strength and grace to you, and to your mom. timothy hudson erin while my dad was 79 when diagnosed and just turned 87 i too feel like i am dying along with him. i share the pain he shared and we are nearing the end and it’s so difficult unless you have been through it. he is my best friend. hang in there. i always say i could write about this journey the ups and downs each day not knowing what to expect. it’s changed me forever. hi barbara. you’re right, that it’s impossibly difficult to comprehend lest you go through it yourself. your dad, your best friend, is infinitely blessed to have you with him as his angel and advocate. and may the change in yourself be one of unexpected tenacity and confidence, knowing you’re making things the very best they can be, despite the outcome being the opposite of what you wish for. strength and courage to you. timothy hudson my husband was diagnosed in 2019 @ age 54 with unspecified dementia. in the past 8 monthes 2 drs have mentioned pd. our family dr got us to a nurologist 3 wks ago. we seen the practitioner and then nurologist at same appt. they both said and say it is lbd. we go nov. 15th for practioner to do punch biopsies. it will be sent to a california lab to check nerve endings of biopsies. nurologist says they have been doing this for 19 months in the united states. i have no idea what stage he is in either. he is physically and mentally dependent on me. that’s a tough scenario, terry. one of the biggest benefits of being confident of the lbd diagnosis is that you can get the best available treatments, and perhaps more than that, in my view, is that you can ensure that medications that can be extremely harmful to a person with lbd are avoided. it’s worth investigating these, and seeing if you could have them listed as “allergies,” which seems most effective at ensuring they’re never used. strength and courage to you! timothy hudson i really identify with what you are going through. my mom is my best friend and it’s such a horrible disease. it’s as heartbreaking as it is exhausting. my mom is in end stage lbd and my sisters and i had to make the difficult decision to have her in a memory care center/nursing home because she needs assistance with every function and they really can and do help her better than we could. this past week she has had a frantic weight loss and hasn’t eaten in 5 days. i just flew in from ca to be with her as the time is coming soon. she hasn’t opened her eyes in a few days but i could tell she knew i was here and that brought her great comfort, and me as well. she tried to open her eyes and could only mouth a few words to me, but i feel the love the care center brought in a cot to her room and my sisters and i will be staying here with her throughout these last few days. god i love her and wish i could get time back. very sorry for what’s happeneing with your mom, erika. having you and your sisters with her, especially at the latter times will be very comforting to her, even if she cannot respond to you. tell her what you need to, because even if a person cannot outwardly respond, it doesn’t mean they cannot comprehend or take in what’s said, and who’s with them. she’s lucky to have you and your kindness, love and care will envelop her snugly. may you and your family be surrounded by grace, and have unexpected light in this dimly lit period. strength and courage to you. timothy hudson thank you for this concise and sensitive summary. my partner is probably at 4. i have experienced all the symptoms you describe and feel helpless now as his family have put him in a 24:7 care home. with lockdown and covid in the ch we can barely see or talk with one another but recognition and love remain. covid has made things very difficult indeed, chris. i’m very sorry for how things have progressed, but for many, it’s just impossible to provide the care needed at home, and placement in a facility is the only option to be able to proceed. it’s so wonderful that your profound connection has allowed you to maintain that love and recognition, despite all the barriers. strength to you! timothy hudson thanks maggie, i take care of my mom as she is living out her life here at my house. she too is surviving the stages of dementia. what really scares me when mom has what i can only refer to is a seizure or a spell. i just brought mom to her potty, i have to pick her up and move her from wheelchair to potty. mom is now sitting comfortably on potty, all of a sudden her right eye moves towards her nose. mom has a blank look on her face. i try talking to her but no response. then mom starts slouching and the starts hunching over as if she lost control of her body. she not responding to simple commands. then she starts drooling. this seems to last for approximately 10 to 20 minutes. it takes that long for the fire department to get here. i was able to get her off the potty and back in bed as they drove up. that’s a super tough, worrisome situation for you, william. your mom is so very fortunate to have you as her tireless care partner, especially when such acute attention is required. it sounds to me similar to what my mom experienced, which seemed to be related to sudden blood pressure drops. we were unable to predict or prevent these, so built areas to assist in keeping her safe as much as possible, in case she had an unexpected episode. this entailed things like having a toilet seat with arms to prevent sideways falls. i believe we prevented some catastrophes in this way, although nothing was perfect. seems like you are doing everything right. i hope the episodes do not recur. strength to you, timothy hudson thank you for the info. i have asked but not given much information. my name is caron. i am 59yo diagnosed with lbd three months ago n but pulled out of service at work 3 years ago. glad you found the info useful, caron. very sorry for your diagnosis, 59 is very young, although, sadly, i know many at this point who are similarly afflicted. may your journey be the very best it possibly can be. by your research, you’ll continue to learn, and ensure that it is the best. strength to you! timothy hudson caron, how are you doing now? my husband was diagnosed @ 54 with dementia. in the past 8 monthes symptoms have come out and they are going to diagnose lbd. he is 58 now. thank you it seems like no one understand or cares what i am going and dealing with. i have loved my wife for 48 years, but now living with and catering for her is killing me. i pray to god to just let it end. my mom was sent home with no therapy and four stage 3 bedsores. this was one week after hip repair and she was walking before surgery. my father 86,a nd mostly alone, treated and healed these by grace of god and labor of love. mom still knows all of us. speaks one or two words at a time. if we had not gotten her home, we feel she would have only gotten worse. godspeed to you, dad and mom, and the rest of us. i am tired. sincerely, randy hello timothy, thanks so so much for setting up this website. it was the first i found and went to, as it was canadian. i live in waterloo , on. my loved one (lo) has been in ltc for 6 months. he has received excellent care. i visit 4/5 days a week for about an hour and some. on sundays we go to the chapel service. i gave myself permission to take wednesday off as he has two good buddies who visit him then. there are also many therapies i have orchestrated for him e.g. physio 3xs a week, mt 3xs a months, s and l once a week. plus he also participates in many of the recreational activities designed for folks with dementia. i have learned so much, somethings i didn’t really want to know but since i am a retired teacher i have this need to know and educate myself. last month my lo developed a very (in my view) weird auto immune skin disease   blisters. thankfully the nurse practitioner on duty diagnosed this right away as she recognized it. so my lo was put on antibiotics and prednizone for about 10 days. the blisters too had cortizone ointment applied to them. fortunately this only happened on his right hand and forearm. it could definitely have been so much worse. also the chief doctor under whose care my lo is, told me that if this should recur (hopefully not) he would be put on a low dose of prednizone for the duration. so far he is healing in that dept. but all of us family and friends have observed the decline. his new doctor at his lt care facility told me in april that my husband was indeed in the right place. now i am getting some decent sleep. i am also returning to my own activities and some social life. thanks again for all you do and have done for those of us, carers, and lbd suffers. hi carol: glad you found the site, and have found it useful. you are such a superstar for your lo! we’re very fortunate in canada   and ontario, for the great options we have, in comparative terms to many other places. sounds like you have him in a great long term care facility, and that they’re really attentive. what a difference this makes. i’m delighted to hear you’re also getting sleep finally! that is something that’s essentially impossible if your lo is home with you. > here’s to continued good fortune, under the circumstances, and that his condition continues to be so well managed. > strength to you! timothy hudson carol, thank you so much for sharing this. my husband has been deteriorating in front of my eyes for the past three years. finally after his previous internist just blaming things on aging, his cousin, an rn, asked me if he’d been checked for parkinson’s because she noticed some things and it runs in his family. at the beginning of this year i brought it up with his new internist, who agreed he thought it was parkinson’s and referred him to a neurologist in the movement disorders and memory department at the medical college. the neurologist confirmed it in february, but then in march was leaning towards parkinsonism. the dementia, hallucinations, delusions, and some paranoia seemed to get worse. he would claim our house was not his home, and he would insist i take him home. he also would be wanting to find his parents (deceased for a long time). he would get angry with me for not taking him “home” or to see his parents. i had been able to snap him out of it, but last week i couldn’t get him back to reality and he tried to choke me. he began wandering outside after dark looking for his parents’ house. so i called 911, and he was taken to the er at the medical college where they ended up determining that he has lewy body dementia with parkinsonism. they recommended he not return home, but be directly placed at a long term care facility. his doctor at the ltc told me that i had done all that i could, and it was the right thing for both my safety and well being and my husband’s safety and well being for him to not be at home. he said lbd is too unmanageable to expect the spouse to serve as the caregiver. he needs professional care. it has been a wonderful feeling of relief for me. my “real” husband has been “gone” for a few years; i have been missing and mourning for that person every day for years. it’s been a wonderful peaceful feeling since last thursday to no longer be afraid in my own home, and to no longer be on edge never knowing from one minute to the next what his reactions, mood, or if he was out of touch with reality. i go to see him every day, and he never asks about home or why he’s living at the ltc. i don’t think he really knows where he is. he seems happier and content there, having “conversations “ with other residents, doing activities. a friend of mine said he probably likes having people around and having more to occupy his time. sorry for how things have gone with your husband, cynthia. but your insights are great and i like what his doctor said, that his long term care placement was completely appropriate “for both your safety and well being and your husbands safety and well being.” those are the two primary elements, and we must always remember ourselves, that we need to be able to continue, for this is so frequently a very long marathon, and one that has so many risks both to the carer and the cared for. strength to you! timothy hudson. i read your post with much interest. i am so sorry for all you have gone through. thank god your husband is now in a safe place and you are able to get the rest you sorely need. i found this site as i was trying to find information on lbd as my 54 year old son was recently diagnosed with this with parkinson’s. he’ll be getting a dat scan to determine for sure what we’re dealing with in terms of the parkinson’s. he’s already having a hard time with his work as it’s detailed and he has days when not much makes sense. i’m planning on having him live with me and my husband until such time as that proves to be impossible. do you know of any support groups specific to parents dealing with their child, though older, suffering from this terrible disease? i would greatly appreciate it. god bless you and your husband. very sorry for the diagnosis of your son, lucy. that’s such a harsh blow. i don’t know of any specific support groups for parents dealing with a child with this condition, but i am confident that the support groups for carers will be beneficial, even though your situation is slightly different. > i personally recommend these two groups, which are extraordinary resources with very active, knowledgeable and compassionate people: https://www.facebook.com/groups/lyndseywilliams/ https://www.facebook.com/groups/313102568744792/ i hope that you’ll find solutions and answers, and more than anything, that you and your husband can maintain your own health while helping with your son’s condition. this is very hard to do   please be forgiving on yourselves, and get the help that you will need to do the long marathon that is lbd caring. it is harder than most ever realize. you’re a great inspiration, in a uniquely difficult position. > strength to you. timothy hudson thank you for sharing your story. it sounds so familiar… like what i am living with. however, i could never afford to place my husband in a ltc facility. they are too expensive in new jersey. oh, my! the latter part of this describes my lo so very well. i am sole caregiver since in the us all ltcf are so expensive that i can’t afford one. i rarely get much sleep, as he doesn’t know this has been our home for 35 years. he too gets very angry when i can’t take him to his childhood home and to his daddy, since he is “gunna be mad” because he’s late getting home. his dad has been gone for 45 years and he never speaks of his mother (she passed15 years ago), or even his son and grandchildren   but they stopped coming around when he started worse. his sister hasn’t seen him in almost 2 years. we all live within 15 to 25 minutes from each other, but they (1) just don’t care or (2) just can’t bear to see him like he is now! there are times he scares me real badly, but i love him and will be with him until one of us leaves this world! god bless this site! i’m glad you found a good ltcf for your lo! what a hard road you have, ann! it is extra hard when our families and friends stop coming, but as you wisely observe, it can also be from their own fear of being unable to bear seeing our lo in such rough shape. here’s to those who are afraid, and weak, gaining some courage to do the right thing! it is possible. strength to you! timothy i went thru this with my roommate. it was sad but frightening. she spent her final two weeks in a care facility. the last year was very bad with rapid deterioration. but previously she was somewhat functional. were in the stage 5 i believe. my dad has this. he went to the hospital yesterday because of being very weak. and he had a slight fever. will this continue to go down hill from here? i’m really worried. sorry for how things are going, christina. they condition is progressive, so although you may have significant improvements and rallies, the overall trend is to decline. the pace of decline can vary significantly, and can be punctuated with periods he’ll likely rally. may the latter be many and the declines manageable. he’s blessed to have you as his advocate. being in hospital is usually very hard on our loved ones   your presence and assistance there will be very helpful. this article may help, particularly the second half, on what to do when in hospital. > strength to you! timothy hudson we are in stage 5 also. has been in care for 13 months. unfortunately symptoms never improve, only increase, so sorry for all of us :)) indeed! sorry for all of us, anyone affected by this very difficult, punishing condition. strength to you, donna! timothy hudson thank you for setting up this forum. i am the primary care giver to my 86 yo mil. my own research has brought me to the conclusion that lbd is what she has. i’m not sure of what stage she is in, but the lack of appetite (maybe 300 calories a day) just began about 2 weeks ago. she was once well over 200 lbs, but over the last 11 years, she has lost more than half her body weight due to chronic bouts of diarrhea. this disease is very vicious. what bothers me most is she is very aware of what’s happening to her. that’s a tough situation indeed, elaine. the diarrhea is very possibly a lewy related element, since the condition affects the central nervous system, and can impact so many areas, and digestion is one that’s frequently compromised. this can manifest in many ways, with constipation being more common, in my lay person’s experience, but it’s also very common for the opposite, as is having bouts of both. your help and advocacy is so valuable to your mother in law. and with her insights into what’s happening, she knows what you’re doing, even though she may be very frustrated at times, and may even take things out on you. here’s hoping the digestive issues stabilize, and that she and you can have some comfortable periods at least. strength to you! timothy hudson my husband at 59 is about stage 4 lbd.i was wondering what antibiotics help with the skin blistering? he’s been to so many docs and no one knows what this is.. do you have the autoimmune disease name? i would be grateful. jane hi jane   i’m sorry about the many difficulties you’re experiencing. i’m not a doctor, so i can’t suggest what might be causing the skin blistering, unfortunately. lbd causes autonomic nervous system dysfunction, but i’d say that’s a broad term to cover almost all aspects of bodily processing, rather than a specific “disease” but that would include breathing, digestion, elimination, heart rate, blood pressure, smooth muscle control, etc. > i hope you can find a solution to the skin condition your husband has developed. certainly there are many people with lbd that have skin issues, including my lo (who had red, blotchy patches that would randomly occur; oiliness; and flakey skin at times as well). > strength to you! timothy hudson the dermatologist said that my husband’s rashes were psoriasis. he had it as a kid but never badly had never until his other symptoms started progressing. oddly enough, in the last few months, 2 3 years worth of “psoriasis” disappeared with almost no treatment. i think it’s just another issue from his immune system trying to fight against the illness. i agree with you, kristen. for some, certainly, psoriasis is an issue, but in the case of my own loved one, what looked like psoriasis would spontaneously appear, and disappear, with or without treatment. i believe that it’s also a lbd related issue for many people. i hope it stays away for your husband. you’re doing a good thing for him. strength to you! timothy hudson light bulb moment!! my husband has also had skin issues since his youth but the last couple of years (basically soon after his lbd symptoms started) it is a constant cycle of dry flaky skin even though he always uses the rx his dermatologist prescribed. the neurologist just confirmed that my husband has lbd. he is doing really well memory wise with meds i have so many questions but right now i’m wondering about his seemingly lack of interest in learning about lbd. it’s unlike him to not research a diagnosis. thanks so much for having this vehicle for info and support hi cyd: glad you’ve got a diagnosis, although i’m sorry it’s not a diagnosis you’d like. in response to your question, he’s likely not wanting to learn about it because it must be very worrisome for him. if i were to be diagnosed with a condition like this, i might resist learning more, initially, primarily out of fear, and perhaps a bit of denial. to whatever comes, strength to you both. timothy my husband was diagnosed 4 years ago and he is in stage 4, closing in on 5. he is 69. he too has huge blisters on the bottom of his feet. one covers his entire right heel pad. no one seems to know what causes this. his hospice nurses and the nursing home nurses are baffled and say they’ve never seen this before. he hasn’t been able to walk in about a month, so it’s not from his shoes. any ideas? very sorry for his condition, and the blisters, nancy. i’m not a doctor, so i won’t provide medical advice, but i have seen this in two instances. one was from fluid retention from edema (caused by congestive heart failure) and the fluid pooled in one location since there was little movement. the other was a compression sore from the weight of the foot resting in the same spot. i suspect it’s more likely something like this, if he’s not been up and walking. i hope they can be treated so they don’t become infected. there’s so many worries with lbd. > you’re doing a very good thing! strength to you. timothy hudson hi jane, i, so sorry for what you’re dealing with. and you may not see this as i just now came across your post. the skin blistering may very likely be bullous pemphigoid (bp). it is a horrific neurological autoimmune disease. my mother has lbd with parkinsonism and about a year ago was diagnosed with bp. it’s important to have your loved one seen by a dermatologist that specializes in this. most likely at a teaching hospital. it’s a very serious, incurable, difficult to treat, disease. sending love and prayers to you. thanks for your reply, traci. bullous pemphigoid was also experienced with a dear friend’s husband, and his was manifested on his palms, and none of the doctors recognized what it was until his wife brought it up. it was treated with a degree of effectiveness using corticosteroids, if i recall correctly. the condition typically occurs in people over 60, and usually will resolve within five years, however there’s significant risk of infection if untreated and unresolved. you can get more info in either this link to the cleveland clinic or link to the nhs. my husband has lewy body disease and has had it for about 6   8 years: his joints have become very stiff and winces if i touch him. the hospital is trying to get him into long term care but it is a slow process as there are so many patients in our province. he recognizes me some of the time and wants me to take him home. it was very difficult that i was losing him, but after 55 years of a very wonderful marriage i felt very lucky. i hope he does not suffer at all when it is his time ….he has always been gentle and even loved by the nurses. maggie 2018/10/30 sorry your gentle husband is having such pain in his joints, maggie. i hope you will be able to get him into long term care soon, both for his sake, and yours. in ontario, it’s a very slow process, as you indicate it is in calgary, alberta, too. there’s definitely too much need, and too few places available. > you have great insight, and wisdom to be thankful for the 55 years of wonderful marriage, even though you are losing him more all the time. it’s hard to be appreciative, but i agree with you   you were very fortunate to have all those good years. i am sure he is very thankful as well, even if he cannot show it now. > strength to you! timothy hudson thank you , this is the most informative article i’ve read yet. and i’ve read a lot. my husband is 64 and we’re in end stage. he has shown symptoms of all stages since before he was diagnosed with parkinson’s. he was hospitalized for 2 months, near death and they diagnosed him with lbd. then he started to get better after a few days in rehab i brought him home. after 2 days being home his mind started returning. so the fluctuation is true. he’s now in full time hospice care at home. it’s horrible and life changing what we are going through, i’m with him 24 hours a day. he needs assistance with everything now, his skin is breaking down not sure what to do with that. he’s on heavy medication to stop the roaming and agitation. i just wanted to share our experience so far to maybe help someone else. most people don’t know there’s medication to help with the symptoms of anger and their threatening behaviors so i can be more at ease and sleep through the night. thank you again. very sorry for your husband’s decline, and his current state, bertha! it’s so punishinly hard on him, on you, and all those touched by the condition. i hope his latter times are the best they possibly can be. > strength to you! timothy hudson my father in law (92) lives with us and he was put on hospice care in july for lewy body. he is now in cycles of being awake for 2 or 3 days, seeing things, constant talking, tying to get out of bed, then he will sleep for 2 days and repeat all over again, this has been so depressing for us to watch him go through this. some days we wonder if he will make it through the night and them he will wake up somewhat alert wanting to eat something or just want to get up. when he is in the up all night phases he is very strong but on a “normal” day he can barely do anything by himself. we don’t know what to expect from day to day and not knowing how long his little body can continue these cycles. any ideas for us?? hi vicki. very sorry for how things are going with your father in law. it is so very hard, indeed. your description of his condition is not uncommon when a person is quite far advanced. as for what to expect, i don’t think i can really supply anything of substance. my only suggestion is to continue doing the best you can, to try your best to accept what’s happening, while always striving to make things the best they possibly can be, with sensitivity to the changes he’s experiencing, since what works well at one time may be completely ineffective or detrimental at another (or the opposite). i hope things go the very best they possibly can. strength to you. timothy hudson stage 4 or 5 sometimes a mix. we are moving to assisted living after numerous falls. i can’t lift him when he falls. he went outside in sneakers and underwear in middle of night. thank god i heard the door open. i see a significant decline in last 8 months. dr’s in the beginning were useless. had 5 diagnosis from 5 different neurologists. i will be moving with him until he goes in memory care. this disease is relentless. god bless all who have lewy body family member. we’re married 45 years and so much for retirement! it’s a very bitter pill to swallow! very sorry for what’s happening, joanne. picking someone up from a fall is excruciatingly difficult, often impossible. and saving your back and your own health is the right thing to do, to be able to keep making those differences you’re already achieving. even when it seems like failure, it is always infinitely better than what would be the case otherwise. you’re doing heroes work. strength to you! timothy hudson thank you so much for this article. i believe my loved one is in phase 5 or at least fast approaching it. during this additionally stressful time due to covid19, i am most grateful for the visits from home health professionals who come weekly to help, advise , and assist me in caring for my mom. prayers, help, and encouragement from family and friends are keeping life at an even keel, too. i hope someday we can find a cure for this disease and the many other dreadful ones around today. it is so true that lbd phases and symptoms are less than predictable and static. a client of mine for the past 30+ years (i’m a stylist) asked me one year ago in july 2019 to be her medical and financial durable poa. when i stepped up i found she had a “handyman” who had been taking advantage financially. i fired him and set up a meeting my financial advisor to help me manage her investments and to give me financial advise assuring her long term care. i had noticed subtle changes for about 1.5 years leading up to her asking for my help. the first thing i found is there are no handbooks and no list of people to line up to help, like meal delivery, home companion, adult daycare programs, etc. there was an immediate learning curve. this june she had to move to a memory care home. she is plagued with utis and hallucinations. she tells me i’m not real. i tell her she is loved and people are so happy to know her. her aphasia is getting very bad these past 6 months. she has had a couple of instances of pronounced and intense symptoms that leave her with greatly diminished abilities. she is 72 years old. as recently as last week she has fainted twice, both with trips to the er. i had an aunt with lbd so i know how this sad journey ends. my client has had no one else in her life by choice. she is estranged from her adult son and did not cultivate friendships. she had no one to ask for help but me. what i have learned is to maintain relationships with friends and family who love you and can help set up care before it is immediately needed. also, involve trusted professionals to help guide and plan for financial issues. i was able to negotiate with the home to have her $6500 monthly care charges reduced to the amount she receives in social security as long as she lives, even bed bound. she will need palliative care and hospice, which will be paid for by medicaid if her finances are fully spent down. dementia is always sad, but arming ourselves with knowledge helps lessen all but the emotional burden. thank you, timothy, for this information. it makes a huge difference knowing that some of what i’ve witnessed is in here and i won’t be too thrown when and if other symptoms present. you’re doing a good thing for your friend. i’m glad you have such insights, and a great approach, and i’m happy you found the information here useful to you. may your client’s journey be the best it possibly can, for whatever’s left. strength to you! timothy hudson my wife appears to be in stage 3. i now have home health mornings from 8 12 and evenings from 6   10. my 55 yr old daughter is a big help on weekends. i am struggling with clinical depression, but improving little by little with medication. the home health is good, helping her to dress in the morning a for bed at night. with my depression it is still hard on me. i am struggling with the alternative of us entering a long term care facility. we were signed up to enter an excellent facility but decided to cancel and try the home health. we have had the home health for two weeks. with my depression and lack of energy i am still struggling, but at least we are in our home of 40 yrs. that’s a tough situation, jim, but it sounds like you’re doing an amazing thing for your wife, especially when you’re contending with depression yourself. that is very common with caregivers, but adds a new challenge that’s not easy to manage. sounds like you’re doing everything right, with your own medications, and with the choice of home health aids, and with the help your adult daughter provides. you may be best off to stay home, and continue with home health, rather than moving to a facility. both have pluses and minuses, but for most people, in my personal view, home is always best, if it’s possible. long may it last! you’re doing a good thing. be proud. strength to you! timothy hudson thank you for this website. thank you so much for such a thorough report on potential symptoms. my mother has just been diagnosed with lewy body and we had no knowledge of this disease. this information is very helpful sorry for your moms’s diagnosis, julie. glad you have found the info here useful. your mom’s so fortunate to have you as her angel! strength to you. timothy hudson hi tim. i too shy away from the terms stages etc. lbd is not a linear trajectory and as you say many ‘ symptons’ return eg. like a twisted snake. my beloved bob’s lbd was happening so damn fast it made my head spin at times. he was diagnosed by his neurologist nov. 7/2017 and died feb. 8/2020. overnight in early 2019 i think feb. he went from being ambulatory to needing a wheelchair. it’s a good thing i am someone who thinks ahead. i had actually had the physio at sunnyside measure him for a wheel chair. which we didn’t need until feb. 2019. the hardest and many hard things was realizing that i am a ‘fixer’. and i couldn’t fix my darling. i realized this ‘fixer’ part of me well after bob died. it is always intersting to me , that even in my early 80s i discover truths about myself. i went to his grave today to remove the summer planters and establish the fall ones. fortunately his ashes are buried with his parents(he was an only child.). and the cemetery is only a 12 minute drive from my digs. if you have time check our lbd /face book page. we are in the midst of our next project.canadianlbdinformation. thanks again for all you do for the lbd community. as ever carol you’re doing incredible things now, after your journey with lewy has ended it’s most intense phase, just as you were while you were in the darkest trenches, carol. thank you for all you’re doing! timothy hudson this is a very helpful compilation. thank you. but i need to know what to expect as death is likely near. within 2 months. thank you hi everyone my name kimrene’e shaklee, and my dad is 90 years old with more then several of these symptoms, i have only been taking care of him from mach 2023 to present. he is very under weight for his height, he loses his temper more often then when he did when i first got here to take care of him, he swears that people are stealing from him at night time because he had servants cameras put up a long time ago on his property and has 7 of them monitored on his bedroom tv keeps it on 24/7 plus his regular tv too. i try to talk with him about these illusions because we have 2 apartments with 2 single renters that live on my dad’s property, they’re both elderly with their own physical disabilities that’s why my dad rented to them. he’s also a former veteran from the korean war which i think that’s why he feels he is being stolen from. sometimes he accuses me too but i couldn’t do that to my dad he’s the only relative i have as far as an elder in my family left   my mom died in 2010 of heart failure, and of my other family members are all living in different states as well. i moved to houston texas to my dad’s because one of his renters called me saying he was giving away a lot of money to people my doesn’t really know to help clean his house and do the shopping for him and daily cooking etc… i came as soon as i could get the money together to drive down here, i put a stop to those people using my dad like a cash cow. each month i go with him to his doctor’s visits at the va medical center i tried to talk with his doctor try to tell him my dad is doing strange stuff at times, and can’t remember where he puts things around the house, or outside the house, they took his driver’s license back 10 years ago but i caught him driving back home one day because when i woke up the car was gone and i looked at my monitor an saw him pulling up outside on the camera. i had my neighbors help put up one in my room because my dad would take off and go somewhere i went to check up on him one night and his bed was empty, i luckily found him safe and sound over next door talking with another neighbor whom just moved across the street from us. i was so scared that i screamed at him i couldn’t help it. things settled down after that for a while he still thinks he can pick up a hammer and do carpentry work, we have an unfinished wood floor in a 3rd apartment that my dad wants fixed up he can’t afford a handyman and i don’t dare leave him here by himself for too long so can’t get a job. i’ve been trying to convince my that it’s to much heavy work for him to be doing but he’s really headstrong over this situation. one day he came inside from the hallway and had his sock off of his foot and i looked down and his left big toe nail was half gone an bleeding. i about lost my temper but i kept it in check and told him i’m going to call an ambulance because he needed medical attention right now. he laughed at me and said oh no you’re not, i’m fine, i just need a bandaid for my big toe. i was so mad i could bite nails but i said we need and emergency kit right now. the female renter next to us watched my dad while i went to walgreen’s and bought a big emergency kit with everything extra i could afford to buy with it just in case. i know this sounds bad on my part, i’m not an expert with situation but i did use to be a home health aide for 15 years back in 2017, was my last time taking care of anyone but myself. i do cpr and basic emergency care, but when your 90 year dad is bleeding on the floor in front of you and thinking he might have broken his big toe on top of half of the toe nail being gone too i could have died right there. how would i explain this to the emergency room attendees? they would have sent the hospital social services people to talk to my dad to if i did this to him. i get all paranoid because my dad jokes telling his doctor at a visit one day i beat him up all the time. that’s not funny to me. i could never do that to my dad, i love him very much. i cried when we gone home from his doctor that day. you may think i’m going overboard but my feeling are invested in my dad i’m trying the best i can to keep him safe from harm. i don’t know anyone here really just the two people that rent from my dad. they have their own lives to live without my running on about my dad, sorry, i said way too much, i got carried away. i’ll stop now. i’m pretty sure my dad had lewy body dementia and his va doctor don’t care. i am doing better with my dad from july to present things have been ok. thank you for you really in depth article here and may jesus christ bless you all here that are dealing or suffering with this horrendous disease. sorry i get confused with big words. gods healing unconditional love to you all sincerely, kimrene’e shaklee how long did each phase take to progress? 1 year? 2 years? for me, and for all the thousands of people i’ve interacted with as a support group administrator over the many years i’ve been involved, there have never been any real consistency of how long any of the so called phases last, unfortunately. thank you so very much for your very informative website. my husband was diagnosed two weeks ago. he probably fits in phase one to two presently. your site gave me the answers to the questions i had about our future. with thanks, s. happy to help, s. i hope you find other information here helpful as things progress. it is a hard condition, and there is surprisingly limited information that’s reliable, and which covers all the aspects of making the life of a person who has dementia with lewy bodies the best it possibly can be. your compassion and advocacy for your husband will make his journey exactly that: the best it possibly can be. strength to you! timothy hudson. my husband has been fighting this for over four years. he just turned 40 last month and was diagnosed with lbd, or early onset alzheimer’s. it doesn’t really matter. they are both awful. we have six kids living at home and my husband is at a stage where he struggles with bowel incontinence, and it has become more frequent. he stopped speaking a year ago. some days he whispers. once or twice he suddenly started talking and singing which lasted a couple of very happy hours. i feel so thankful for the good days. i have no support except the kids and its been very hard on us all. the most difficult part is that we make too much money to qualify for help of any kind ($30 over the cap). i really feel that it should not be based on income. this is a terrible illness that affects everyone and its crazy that there aren’t programs to help. anyway, i didn’t come on here to complain. we just received the diagnoses and i am grieving quite a lot at the prospect of him not recovering. i do hope that we can someday find a cure for this. thank you for this excellent article. you are all superhuman. 🙂 shelly i am sorry for the diagnosis of your husband, shelly, especially at such a very early age. your grieving is completely understandable   how could one not? you, too, are superhuman, and will find your superpowers tested to their limits, but will overcome all obstacles, and although the outcomes will frequently not be what you’d hoped for, they will be immeasurably better for your care, compassion and will. i know it. strength to you! timothy hudson my husband is in the final stage but physically healthy. it’s year 11 since diagnosis. the scary hallucinations are gone but he expresses verbally with the worst curse words. clueless on that progression. he laughs when he sees me and that makes my daily visits to the nursing home worth it. i can be silly and he responds with silly words. he rolls his eyes when he gets it. he says,”its good or wonderful” when i hold him and tell him i love him. he is there! this will be light on the horizon for many. definitely won’t happen to all, but what a wonder it must be for you, veronica. very happy for you that your husband has done so remarkably well, for so long, and is still in such great condition and so very well able to connect. long may it last, and here’s hoping for many others to have a similar experience. rare indeed, but not impossible. > strength to you! timothy hudson that’s absolutely wonderful, veronica. despite the terrible curse words, it sounds like everything else is remarkably good. it doesn’t sound like the end to me at all. but so many things are different for everyone. your appreciation of him, as he is, is fabulous. long may the positive moments last. > strength to you! timothy hudson my mom was just diagnosed with lewy body dementia just few months ago. she is in stage 5 at this point. she is going down hill very fast. i am trying get all the information i can on the condition. glad you have so much time with your husband. my father was just diagnosed october 2nd and has been on hospice for a month now. his decline was incredibly fast and i believe they thought he would have been gone by now. this is heartbreaking and our hospice nurse knows nothing of this horrible disease. it’s so sad how quickly this disease can steal away someone’s mind and body. i wish you peace on this difficult journey that’s so very hard, angela. i hope his decline slows, and that you’re able to say everything you want to while you can. he’s lucky to have such a caring daughter. strength to you! timothy hudson my mum has been properly diagnosed in this last month and is now bed ridden and has pneumonia   it is hard to get my head around, that my mum is dying. sorry for the fast changes in your mum, kathy. that’s so very hard. i think your experience, where it’s so hard to get your head around her dying, is sadly common. especially so when there are so many other heartbreaking aspects that go along with the physical decline. may things go the best they possibly can, for both you and your mum! strength to you. timothy hudson hi. my dad had this in 2009 and in the final stage, the hospice nurses thought he was going to die in a few weeks   and he actually lived a year after they said that. he was bedridden, and they did give him pain medications, he did not complain of pain. at the very end he did not eat and couldn’t. i was not living at home at that time, but my mother told me this, and i did visit him three times. he did not know who we were, but he did sometimes think he was speaking to his dead mother and brother: who knows, maybe he was. i am sorry about your mother. my mother has parkinson’s and dementia now. it’s all so sad. sorry to hear about your mom! we are in year 3 of this horrible disease. my husband has a few good days but mostly confused ones. he has had several falls and are in the process of moving to assisted living. i can’t handle lifting him for bed anymore. it’s hard with the hallucinations and the next day we do it all again. god bless all who deal with this devil! and blessings to you, as well, joanne, for your own effective efforts to confront the devilish lewy! strength to you! timothy hudson how long was your mom having symptoms of lewy body dementia before diagnosis? a geriatric nurse once told me “whatever you are in life, you become more so later.” you two must have had a wonderful life together. i’m hoping i will be like your husband! does anyone just get rip roaring angry. my husband insisted he was getting out of the hospital bed we have in the family room. he told me to shut up and in 52 years he has never spoken to me in this manner. i had to get the fire department to get him into the bed. he is 6’2 and i’m 5’1. he was misdiagnosed several times. my hubby refuses any additional surgeries! anger and frustration are sadly common, gloria. not universal, by any means, but “rip roaring angry” does happen to some. please make sure you’re safe, the size difference between the two of you is significant. you’ve got a hard road   please ensure you’re also getting appropriate help: your own health can suffer profoundly, and you can’t continue as a carer if your health is compromised. strength to you! timothy hudson hi timothy, my husband joe passed away on april 26, 2016 and suffered with lbd for approximately 7 years. the 5 stages you outlined could be joe’s medical history and are his exact stages. we both wished for this type of outline for years. i felt like i was always one step behind in trying to decide what he needed next. thank you for all your hard work and dedication to helping all of us who suffer with terrible lewy. very sorry for the outcome, kathy. i believe that a lot of the components listed in this article are ones that many, possibly even most, people with lewy body dementia will experience. and although i am highly hesitant to offer anything akin to a “prediction” of progression, any help with decision making, which has to happen whether there’s a “prediction” or not, is beneficial. thanks for your kind words. i genuinely appreciate them. strength to you, kathy! my father, george, just passed away this past may 23rd, 2018 from lbd/parkinson’s/alzeimer’s disease’s with congestive heart failure. my mother & i had to watch him suffer through all five stages. it is also one of the most scary, excruciating, painful, emotional, mentally unforgiving and unfair experience that a caregiver goes through. he got to live at home for a while until he went in hospital with a uti then he went to live at the nursing home straight away and got pneumonia and then congestive heart failure. i’m very heartbroken to say the least. any advice would be much appreciated because i’m very depressed 😉 very sorry for how things went, renee. all the heartbreak are such a common part of caring for one with the condition. i hope that the pain begins to lessen, and that your horizons brighten, knowing your father is in a better place now. > strength and healing to you! timothy hudson. i must say this is the most comprehensive and detailed information i have been able to find on my husband’s condition after doing lots of research. hubby’s symptoms go back about 5 or 6 years and the phases describe exactly how his condition affects him and how it has changed over the years. i felt myself smiling as i immediately related to the contents of each phase, especially the one about a spouses infidelity which i was accused of more than once and although i knew it was his condition, i still found it very hurtful, especially when he relayed his thoughts to outside care givers. i think he is between phase 4 and 5 at the moment and although predictions and exact “stages” cannot be given it gives an excellent insight into how they can possibly be broken down. well done to everyone involved for this brilliant article, it has been very gratefully received. thank you for your insight. my husband has all symptoms to a degree but the most debilitating one is low blood pressure which means he is constantly dizzy as soon as he moves and has to hold onto the wall to walk. is this going to be with him for the entire time? it has been a year now and what stage would you put this in? he has passed out with it and also has trouble controlling body temp. unfortunately, i can’t say, because i am not a doctor, linda. from my personal experience, the very low blood pressure was an ongoing issue, for a number of years. the way we managed it best (not perfectly) was to always do things gradually   arising from bed to seated, wait; slowly stand (with support), wait; take a few steps always with “hands on” for safety. falls of any sort are so difficult, and so frequently catastrophic. one other thing that saved us was counter intuitive to conventional wisdom: we had a lot of rugs, soft furniture everywhere, and virtually no “open spaces.” this meant that on the occasions that falls happened in the house, they were often “cushioned.” won’t work for everyone for sure, but saved us on several occasions. i hope you can find something that will help, or a way that you can manage things somehow. strength to you, linda! my husband with pd dementia was just diagnosed with coronary artery disease, resulting in significant new blood pressure meds. we then learned about ‘postprandial hypotension’ he could drop 50 points or more after eating, and remain low for a couple of hours. after a lot of tweaking, he’s now taking much less bp meds, and not seeing the major drops after eating. so happy to hear you’ve got improved consistency of your husbands blood pressure. i expect the tweaking will have to be ongoing, but he’s so extremely lucky to have you as his advocate, and for keeping on top of so many things! you’re his angel. > strength to you! timothy hudson thank you so much for this! my 80 year old, very healthy mom was told on sunday, by an infectious disease doctor no less, that her husband of 55 years most likely has the “lewy type of alzheimers” (i googled louis alzheimers and discovered the answer to the mystery of his many debilitating, odd and fluctuating symptoms). after printing information and showing it to her she said “it describes him exactly”. my dad seems to be in “stage 3”. although it is taking its toll on the family (fortunately my sister and i live close by), i am grateful we have an accurate diagnosis and that he is still often lucid enough to participate in conversation and we are trying to take it one day (sometimes one hour!) at a time. you’re doing everything right, nancy, by taking each moment as it comes. adaptability is the key to surviving this, and to providing the best possible journey for your dad. i’m glad you found the information useful   knowledge is power, and that leads to better outcomes. hoping for the best for your family   supporting your mom and dad will make a profound difference. strength to you! thank you for this very helpful list of phases and symptoms. have read your column regularly on facebook and kept hoping for this very information so i might know, as others here have expressed, what our future might hold. my husband is definitely in stage 2 and has some symptoms of later stages. he is not falling but has all the symptoms of autonomic dysregulation that you describe. the difficult fact for me is his going from semi normal to very debilitated. people will comment that “he looks fine” and he might at the moment but then there’s a downturn. i am comforted to know we are not alone in this. i am so happy and grateful during the good times. thank you again for the support and for this important information. you are so wise indeed “to be happy and grateful during the good times.” bravo! that is an exceptional method of adapting to such a tough situation. so many difficulties and stresses, worries, and losses, but there is joy and hope possible still in almost all cases. and you will find that you are infinitely stronger and more resourceful than you thought, but this will likely only be recognized long afterwards, because there will be so many traumatic moments. so if you can, take additional comfort knowing that you are making an incomparable difference in his life. strength to you! timothy. my father in law has lbd and we live in the uk and i think we are struggling due to the doctors and support teams not really knowing enough information to support us as the family. my husband showed me this and this has described his father exactly and we thing he is in stage 4 but he was only diagnosed a year ago so it seems to have progressed rapidly. it’s so sad and i really worry about my mother in law trying to do this as his main carer. this article we will show to the rest of the family for us to try and understand together. thank you glad to be of help. the uk has a great association, http://www.lewybody.org   they do fantastic work, and might be able to get you connected with additional services. in addition, i post very regularly on a searchable, public facebook page which is exclusively lewy oriented, http://www.facebook.com/lewy.ca   it might help you and your mother in law with education, information, insight and hope. it’s a rough ride, as you know, samantha, and i am very sorry you’re going through this with your family. whatever you can do to support your in laws will make a profound difference, and i’m sure you have such goodness in you that it will make an even bigger difference. the research and outreach you’re already doing proves this. i hope things go the best they possibly can. strength to you, and your family, samantha! timothy hudson. hi, my mum also has lbd and lives in the uk. from diagnosis to admittance to care was just over 7 months, and there is not a lot of information to grab hold of. this has been invaluable and i think mum is now pretty much in stage 4 still less than 2 years from diagnosis. absolutely heartbreaking disease. hi jackie. glad this has been helpful to you, always keeping in mind that every person is different, and yours sounds sadly accelerated, although certainly not the fastest. when we witness it ourselves, it is doubly heartbreaking, since you know the potential of your loved one, their history, their innate goodness. i hope your mum rallies again, she may just do so. strength to you, jackie. we all need as much as we can get. timothy hudson with great gratitude i thank you for all your dedication and hard work putting all this info together . sincerely cynthia s. thank you for your note, cynthia. glad to help increase understanding and awareness. credit goes to the original authors, sue lewis and june christensen, who exhaustively assembled what i consider to be the best grouping of symptom stages, still, after ten plus years. strength to you, cynthia! timothy hudson. thank you so much for all the information you have provided on lbd. my husband has had lbd for approx seven years . i would think he is in the 4/5 phrase . reading your information has certainly enlightened me plus everyone’s comments . thanks heaps again to every one for your wonderful advice & help . sincerely doreen mason hi doreen. you’ve obviously done a great job keeping your husband so well after seven years. i’m delighted the information has been helpful to you   we all need all the enlightenment from each other we can get. when we started the journey with lewy, i couldn’t find anything beyond books, which were exceptional, but not easy to access, and not with enough breadth of information. the comments of others, and on social media has made a huge difference to me as well. strength to you, doreen, you’re doing a great, powerful thing for your husband. timothy hudson. my husband was diagnosed with pd in 2010 but it was only 2 years ago that i realized that there were other things that were occurring that seemed to be other than just pd and i got on the computer and realized that it could be lbd and it has since been confirmed. i think my husband is in stage 3 & i am so grateful to have found your website today. i am glad you found the website, mary ann. i am very sorry for your husband’s diagnosis, but the “silver lining” in the dark clouds of lbd is that he will be properly treated by having that diagnosis. it is great you did your homework, without suspecting it yourself, he might’ve not got the diagnosis. you are doing a very good thing for him. strength to you! timothy hudson. i am so grateful for this information that you have compiled and published. not wanting to sound selfish, (my husband in stage 3 to 4 and i must work 2 part time jobs to survive) ; the mention of the decline and health risks for caregivers is crucial. i don’t know if others have family that feel their caregivers are exaggerating their exhaustion and failing health, but at least i know i’m not a whining whimp. my own health is falling by the wayside and it definitely affects my ability to take care of him and offer him my best. you are certainly no “whining wimp,” terri   you are, instead, the superhero. caring for a loved one with lbd and working two part time jobs is a profound tribute to the depth of your care. but this type of approach can take a dreadful toll on your own health. the countless, and unrelenting worries leave a mark. one upside to working through the tough journey, though, is that you have a distraction. and that, perhaps counterintuitively, can be significantly beneficial to your health, and to your perspective. i hope it is for you   you’re doing a powerful thing for your husband. strength to you. timothy hudson. timothy: my mother showed first symptoms 5 years ago. last year after a psychotic episode she was taken and kept in a memory care unit for 20 days. after that her decline is visible but seems stuck between stage 3 and 4. her speech of all things is ok, however, her paranoia gets the best of her. it is hard to care for her when she is accusing you of tremendous things. is this normal for lbd or is it a sign of something else? at times she becomes physically aggressive. otherwise she is a textbook lbd. what can we do to calm her down? elsa sorry for the paranoia, accusations, and aggressiveness, elsa. you have a hard road indeed. i would say that all that is, sadly, very common with so many people with lbd, and with other dementias as well. it’s worth keeping in mind that more than half of people with one type of dementia have at least one more type to create a “mixed dementia” scenario, which are devilishly hard to treat, and that other underlying mental health issues can also become a bigger issue as well. as for what to do to calm her, specifically, there are medications that your specialist can advise you on, but i always found   in my care role   that looking for underlying triggers was most effective: agree and affirm her concerns, promise to fix, limit stimulation (sounds, people, environment), keep a routine, ensure hydration, ensure no constipation, etc., etc. these things may not fix the behavioural issues, but they may make very significant improvements, and i always try to use that type of modification before any change or addition of medication, since i never encountered a new drug that didn’t have some other unexpected complications. > strength to you! timothy hudson you are not selfish. so many people act like we have to be the caregiver, when we are also depressed and affected by thi i recently had to make a decision to put my mother in a nursing home because i had no one to help me to care for her, and doing so made my blood pressure go up so high that i could have had a stroke. yes i feel guilt, but i also know that she is in a good place that is able to care for her properly. if the caregiving gets to be too much, do not feel guilt because you know that you are doing everything you can. there is nothing wrong with needing to put your husband in a care facility where nurses can help him. that can also be in his best interest as things get worse, and i am sure he would not want you to get ill from caring for him and the stress. my mum has got a dementia with lewy body. she lives in russia , not far from moscow. however an understanding of this medical condition among doctors and society is incredibly limited, if any at all. as a family we are all struggling and suffering the same way as other people who are in this misfortune., but because of above the treatment and support are minimal. thank you for this information. i wish it could be spread across all the languages. thanks for the note, irina. sorry for your mom’s condition. it’s tough enough here in north america, where understanding and awareness is so poor   i can’t imagine what it’s like in many other areas of the world. that’s a very interesting thought about having the information in different languages. have you tried “google translate” to translate the page into russian? i’m sure it wouldn’t be perfect, but i’ve seen drastic improvements in the past year or two, and it might now be viable. strength to you, and to all those in your family who are contributing to your mum’s care. you make a difference. timothy hudson. my mother is 88 years old and has never been diagnosed with this disease but the more i read the more i think this is definitely what is wrong. she is in a personal care home now about to be moved to long care. this is very disturbing for us as a family. she goes days and we cannot understand anything she says and all of a sudden everything is totally clear. she cannot move on her own. she needs help getting up. first when she is up she keeps crossing her feeling trying to walk. she leans back and keeps her legs very stiff. when she is leaned forward she can walk with a walker, assisted. skin is so thin that just helping her up can tear it. she is wearing several bandages at present. she has lost her appetite and has lost about 30+ pounds. she has illuminations from time to time. she talks about my father, who has passed,. she asked questions like, have you talked to your father today? or make statements like, “your father has been in been all day.” she is absolutely refusing to be moved to a long term care home. some family has to be with her constantly and it is taking a toll on all of us. our health is suffering because we are constantly driving to be with her. feeling desperate right now. sorry for how things are going, doreen. i understand how desperate you must feel. it does certainly sound like much of the hallmark symptoms of lewy body dementia, but i understand that in the majority of cases of people over 80 years, it is usually “mixed dementia” where there’s more than one type present, which makes accurate diagnosis very difficult. you are doing a great, powerful thing for your mother, and your compassionate ministrations to her are making her life the best it possibly can be. wishing you renewed strength, clarity and acceptance. timothy hudson. thank you very much for this very helpful information. the illness is so variable in presentation that it’s difficult to find anything but the most general information online. your schema helps to make sense, in a human and gentle way, for caregivers, family and friends, of this awful condition and its progress. i really am grateful. thank you for the kind words, marion. you are so right about the variability of the condition. it’s truly a wild ride   and we need all the help we can get, in   as you say   a human and gentle way. strength to you, marion! timothy hudson. i have been reading the responses with great interest. my wife suffers from what was diagnosed originally with parkinson’s disease. however now they have settled on lewy body. i believe she is in phase 3. my question is: does the pace of the progression increase as one moves through the phases. she seems to be progressing faster than her earlier years of the disease she has the disease probably 4 to 5 years. don hi don   sorry for how things are going, and that the symptom progression seems to have increased. i’m not a doctor, so i can only provide my personal experience, and that of interacting with the thousands of members of the groups i co administer online. i don’t have hard data, just anecdotal perspectives. i found that the progression of the condition can change in rate, both speeding up, and slowing down at any time. in my personal situation, there seemed to be precipitous declines, rallies, relatively long stable periods, and   not to provide false hope   but my loved one improved cognitively in measurable terms with the moca/mmse in the last period before she died. that was the most unexpected. > in your case, it’s impossible to know, or to be confident about. being prepared for more rapid declines is prudent. but also being prepared for unexpected stability is also. by this i mean that, for example, looking at long term care options is warranted even very early in the progression, but i would not put my home on the market with the expectation to move out in a short time, since this may not be needed. > and always keep in mind that there can be other completely unexpected elements. falls, aspiration, other medical conditions, and your own health can turn things instantly. > i wish there was more certainty, but i think the only certainty is to be as adaptable as possible. > you’re doing a good thing for your wife. she’s blessed to have you. strength to you! timothy hudson thank you for this article. recognizing this terrible affliction has many variables, it has been frustrating trying to find even a basic roadmap for the future. my wife, who is 59, is clearly in phase 5 and as such is totally helpless. several of the symptoms you list here she has, but i have never seen listed before. she has a strong lean to the left and cannot be centered on her back for more than a minute or two. she has frequent strong muscle contractions . i had noticed that her fluctuations seem to have slowed down, but had not understood why. with the exception of rare flashes, her ability to communicate is extremely limited. she is incapable of performing even the most basic and simple of personal care activities. she fluctuates , as i said less frequently than in earlier times, but overall her base line continues to slowly drop. although my wife has been accepted into hospice, i have yet to place her in their care. my head and heart are not there yet . i am still capable of caring for her and will do so for a while longer. as she only weighs 95 pounds, moving her is not difficult. i can maintain her in comfort and safety although doing so is a 24/7/365 commitment. one issue not mentioned has affected my wife. rather than becoming incontinent , my wife simply stopped voiding. this was in part coupled with an e. coli uti she has been fighting repeatedly for the past several years. we had to address this by use of a full time foley catheter which ultimately had to be replaced by a suprapubic catheter. is this unusual? very sorry for your situation, which you tell with great compassion, clarity and awareness. i rarely see mentions of what i refer to as the “lewy lean” despite it being what i consider common, nor much mention of myoclonic seizures (possibly the strong muscle contractions). i had some success with countering the former by repositioning my lo very, very gently to straighten her at least somewhat. as for hospice, it is somewhat different in canada, so i can’t speak on it from personal experience, also because my lo stayed in her home ’til a final crisis, and three days in the icu before her death. however, the vast majority of people i know in the us have spoken of how hospice was an incredible benefit to them, and how they wish so much they had accepted the service much sooner, basing their hesitation on the same reasons you state. i totally get why you would want to delay. but keep in mind two things   firstly, that it does not mean that you’re accepting the end, it means you’re accepting help. i know of people who were on hospice for a couple of years, others that were on hospice for over a year, and then their lo rallied, and went off it, with the improved state lasting for a couple of years. secondly, accepting hospice earlier allows you to choose the right one: they are not created equal. there is risk to postponing, because often there will be an acute crisis that will force you to take whatever’s available, rather than what’s best for you and your wife. if i were you, i would investigate providers now, and accept the help, which may help you get a bit better rest periodically, and provide the utmost in care for your wife. you write a moving tale of deep and profound love, thomas. i am sure that nobody who reads it will be able to do anything other than feel for your situation, and think of what a wonderful husband you are. and i wish you find continued strength and insight, and confidence from knowing what a good thing you’re doing for her. peace, timothy hudson we checked my mom into houston memorial hospital last week for testing due to dramatic health changes in her physical, emotional and mental capacity. she had a team of 5 integrative doctors testing her and they came up with a diagnosis of lbd and left ventricle heart failure reduced function by 80%. when she was in the hospital she was at level 4 at least. at the hospital to get a base line they took her off her meds and gave her a diuretic to reduce the water she was holding. she lost about 20 + lbs of water weight. with out any treatment they sent her home and we contacted hospice for an evaluation. the team of doctors would call us back to review the findings. here we are two weeks later moms condition has totally reversed. she is healthier in every way than she was 6 mos ago. the cardiologist came back to say she was a good candidate for a pacemaker which would help her heart . she was at phase 4 and now barely at phase 1 of lbd. my question is: is this common to move between phases this dramatically or should we get her rechecked for lbd? reality is she is not wanting to have the pacemaker if she finds herself back at phase 4. however if she can stay at this level or if it was a misdiagnosis she feels that gives her the quality of life she would want to have. is this a crystal ball question or does something sound odd enough where we should inquiry a bit more. thanks for any insight you can share with me. that’s a wild reversal! i hope it lasts and lasts. > in my lay person’s experience, dramatic moves between some phases is not unheard of, and can be common in some people. although that’s a significant difference. however, heart function affects many, many aspects of the rest of the body, including the brain, energy levels, strength, etc. so it is not at all impossible that she will rally greatly by the reduced heart strain, and may, or may not, have lbd, that’s a totally separate issue that specialists would have to assess. > one caution i would have, though, is to consider the potential benefit of pacemaker implanting, and the surgery and anaesthetic it might require, and think long and hard about potential complications, and the risk for delirium after the procedure, etc. that’s definitely something to discuss with specialists, and remind them that hospitals and surgery for anyone with dementia has significantly higher risks. often, a specialist will only look at their area of specialty, and the acute issue they’re attending to, not fully considering the whole situation. > it could be that keeping her in this new state as long as possible, without having the operation might be prudent. but it is, as you say, a bit of a “crystal ball question.” > here’s hoping everything works out well for you and your mom, irene! strength to you both, timothy hudson. pacemaker insertion is minor surgery nowadays. it’s a very quick procedure and local anaesthesia is the preferred anaesthesia. i used to work on an open heart surgery team. thank you for that clarification, hitch. certainly a local anaesthetic or nerve blocker would be infinitely more desirable, to me, than any general anaesthetic. would also prefer a sedative over a general anaesthetic. part of the issue is not the procedure and methods/drugs, but also the entire hospital experience being so traumatic for the person living with dementia. this is no small consideration, but obviously, if the need is there for a pacemaker, and the prognosis is good for the individual, all those elements need to be weighed. my own loved one had many necessary procedures for acute injuries, and although i, personally, believe they increased the severity and progression of the condition, they were absolutely needed, and proceeding with them was the correct choice. thanks again for your comment. strength to you! timothy hudson. thank you so much for this very definitive article. i have watched my husband go through what i now know are the early phases of lewy body. i will read your other articles for additional material. glad you found the article, maribeth. i hope you find the other information useful   the more we can learn, the better the journey will be for our loved ones, and for ourselves. strength to you! timothy hudson by far this has been the most clearly stated information i have found. my dad is 62 and diagnosed with this. he is hovering around the first two phases with some of the third phase. it’s complicated to deal with this since there is literally no real timeline or actual “stage” to determine where he is at. i know the biggest physical symptom is the restless leg syndrome and shaking. it frustrates him when his legs won’t stop. along with his memory being off  he can’t remember what we told him about it being common for what he has. very sorry that it’s struck your family with your dad still so young, nancy. it’s definitely hard to manage with the fluctuations, and lack of “timeline.” i’m glad this document has been useful to you, and hope that you’ll be able to get some improvement with proper treatment and medication. it is possible. at least a proper diagnosis is in place so that you’ll be able to avoid potential catastrophic drug reactions that people who are not diagnosed are more susceptible to. you’re doing a great thing for your dad by researching and learning as much as you can. it will make his journey, and yours, the best it can be under the difficult circumstances. strength to you! timothy hudson. i’m so thankful for the information i’m finding on line about this disease. my mother (97 years old) was diagnosed with this disease about two and a half years ago, but looking back, i think she was displaying symptoms long before that. she has lived with my husband and me for over six years. just recently, a new development has surfaced that seemed to come out of nowhere…pain in her hip and leg. at first i thought it was from a slight fall, but the pain didn’t appear until three or four days later (no broken bones). it’s always much worse at night but the severity varies. after dealing with that for two weeks, it now seems to have diminished almost completely over the past two days. is it possibly the parkinson’s side of lbd and the pain might return, or could it be something else? hi kathryn: glad you found the information useful. i can’t comment on the pain, since i’m not a medical doctor. speaking from experience with a loved one with lbd, pain for no obvious or apparent reason came and went many times   sometimes would last a long while, and spontaneously disappear, sometimes very short and acute then gone. i always had the more significant instances checked out by a doctor, but unless there was trauma from a fall, for example, it turned out to likely be elements of the rigidity and muscle stiffness of the parkinsonism aspects of lbd. we never had to resort to anything stronger than tylenol extra strength, which is a huge blessing since all other pain meds have more significant downsides. you’re doing a great thing researching the condition and having your mother live with you. you’re making her journey the best it possibly can be. strength to you! timothy hudson. i want to thank you for this information. unfortunately my husband wasn’t given the diagnosis of lbd until about july of this year when the problems escalated enough for him to be hospitalized. he has now gone into long term care because i am no longer able to care for him at home due to his needs which i am no longer physically able to do. he is in the fourth and partway into the fifth stage as far as i can judge. i can see hindsight a lot of the stages over the past two or more years. your article has pieced so many puzzling parts together for me. very sorry for the trajectory, sharon. caring for a person with lbd at home is a monumental task, and for so many, utterly impossible for so many reasons. keeping him with you as long as possible, and ensuring that he’s well cared for in ltc is absolutely best for him, and allows you to retain as much of your own health as possible. you are doing a great thing for your husband, and should feel proud, despite the great sadness brought on by the long dark of lewy. strength to you, in the continuing journey. timothy hudson id like to reiterate some of the comments above. my father has just died at close to 89 years following a few years that started with unexplained falls about 4 years ago then loss of balance then rigidity, some psychotic episodes and increasing immobility…well you know the rest. when finally diagnosed (he has lived his life and was born in portugal) the hospital was very clear this was his prognosis and it clarified what all the unexplained falls were all about. his progress through these stages is almost exactly as you have set out here and as we quite obviously neared the end it was helpful for me to read up how you saw it. thanks again for a very informative article about a very debilitating disease which my dad fought but lost to in the end. in some ways it was a huge relief for him and for me at the end as he had become incapable of even communicating with whispered conversations the only thing i got out of him much of the last month of his life. having said that his lucidity was there all the time in between the more random thoughts. i wish anyone else going through this courage and all the best and would be happy to help in any way. well done for your valuable work. that is a generous offer of assistance, douglas   particularly since you’ve gone through the full journey with your father. your experience is not uncommon, but it is more uncommon in one respect in that you are a male, a rather invisible group of carers. as one myself, i have found it an ongoing shock to know how few men do this visibly   it is not that no men are care partners, they’re just “silent partners” in many cases. for whatever reason, i hope more and more come forward and shine proudly. to me, real courage and strength is being able to handle the difficulties and strains of advocating and bringing a loved one along the hardest road one can travel. doing that is heroic, even though it never feels like that. > i also agree that many, if not most, of our loved ones can perceive much of what we say and do right to the end, but may just be unable to respond. as you noted, moments of lucidity were there ’til the last, and it shows that it’s important to keep connected, and to be present. > if you wish to help others, i think the best is to join an online support group to provide context and compassionate advice to others in the midst of the condition. i put most of my energies to that and feel that it makes the biggest impact, which is my #1 goal, and is a living tribute to my loved one, killed by lewy. strength to you, douglas. timothy hudson. thank you so much for your very informative postings. as others have commented the phases you’ve discribed have assisted in giving us some kind of an idea of where we are and what the present and future challenges of this nasty horrible disease that is lewy body dementia. my 71yr old father fell and hit is head while shopping with my mother about two yrs ago. he was brought to a+e and they put it down to low blood pressure and he was possibly dehaydrated, they treated him and left us feeling that the episode was a one off. fast forward a few months and he fell at home and made a huge dent in one of the doors with his head. this time docors done a whole battery of tests and found he has stage 3 cirrhoiss of the liver and heptitas b. doctors also found out that he has an anersyem in his stomach and on his brain and all of his arteries around his heart and body are thickened and as if all of this wasn’t enough to kill him we know he has lewy body dementia with parkinsonism. he went on to having two more falls while in hospital. i personally believe that the first fall he had two yrs ago quite possibly was the first inclination of the lewy body dementia, although my mother has since said she had noticed his memory was steadly getting worse and so was his driving it was terrible at the time and it was a battle to try to stop him from driving. i feel that in his way he was in some way trying to maintain some contol over his own life and who would blame him!..he has been in hospital since april( had two more falls while there) i have to say around this time i began to notice his personality was changing ,he was always a very knarky and impatient man with a quick temper now he was becoming a very laid back, tearful and childlike, he was going with the flow. the hospital have done every exam possibile and we got the news a couple of months ago about the lewy body and the parkinisum, he has deterioated at frightening speed. he has lost about three stone in weight ,he has the lewy lean and the shuffling gait, phsically he looks like a husk of a man with these big terrified eyes looking at you .his voice is almost a whisper and he now needs to wear pads as he is double incontinent. he actually cried in my arms for the first time the other day, i never in my wildest dreams would have forsaw this ever happening. my brother committed suicide 25yrs ago and my father never showed any emotion at the time ,dont get me wrong i know he felt it he just couldn’t show it. but he sees john all the time and keeps saying ‘ i have to get me and john out of here.’ he thinks they are both in prison. he also sees animals and spends his time packing up all of his belongings and sits by the door with his hat and overcoat on waiting for us to take him home. we got a phone call twice from the nursing home to say the found him the basement trying to climb over a gate in the middle of the night, keep in mind he can barely walk. last week we got a phone call to say he fell and split his head open and was rushed to hospital in the middle of the night. he had to he held down while getting stiches in his head and did become agressive which is happening all the time now. i can only imagine how terrified and distressed he is ,it is so heartbreaking. my mother spent nine hours in the hospital trying to keep him in the bed while he’s shouting at her to ‘ leave him alone’ .we have really noticed a change in attitude from the nursing home staff towards the family and my da, i don’t think they are able for him he just doesn’t sleep has delusions and hallucenations is constantly trying to escape all of the time. i did read in a couple of articles that some nursing homes dont like taking lewy body patients because they are understaffed and overworked and ill equiped . i know this myself because i’m a healthcare professional and ive worked in nursing homes. i think some of the problem is lewy body is very hard to diagnose and very few professionals know much about it, i certainly was uneducated but im very grateful that the neurologists in the hospital were able to make the diagnosis. had we known how bad this disease is we should have pushed to have him go into a hospice instead of a nursing home. my father needs 24hr care holistic care patience and understanding. the nursing home are doing they’re best with what they have. we don’t know how long he has left and to be a hundred % honest we hope that he doesn’t have too much longer left and that he will be reunited with my brother soon and he finds some peace. we love him and we miss the man he was even if he was knarky, impatient and bad tempered!! sorry for the long long post but i really needed to get this stuff off my chest and to speak to others who are going through this hell… thank you so much, and god bless…. linda ( ireland ) that is a very sad tale, linda. very sad indeed. there is just not enough care available for a person with behaviours like your dad’s. there’d have to be two plus people there with him 24/7, which no facility nor family is capable of in almost any circumstance. i hope that his frequent visions of your late brother somehow provides companionship, albeit so many unsettling visions seem to assault him. may his worries and frightening visions diminish quickly and completely, and may you all find whatever peace you can. it is a punishing disease, and punishes so many around the person afflicted. strength to you, and may the luck of the irish return and find you and your father soon. timothy hudson thank you for this information. so very helpful. my husband is three years diagnosed and fits between phase 3 and 4. greatest loss for me is the changes in his personality. i treasure the days i see glimpses of him at his best and have learned to embrace and muddle through the days he struggles. so sad to watch them slip slowly away. again, thank you for sharing this with us. very sorry, susan, for the changes in his personality. you are so very wise to cherish and treasure the moments of him at his best in the current situation, and i bet you do infinitely better than merely “muddle” through the days he struggles. you are his angel, and are making his journey the best it possibly can be. that is a powerful gift. strength to you! timothy hudson. this is the best information i have found on lbd. it is amazing how my husband has gone through and had most of the symtoms of each phase. i reckon he is between phase 4 and 5 at the moment. he was diagnosed about 3 years ago but i feel he has had lbd for over 8 years and your information has confirmed this. it is amazing how little is known about lbd even by medical people and i will be pointing anyone interested to you website. thank you i’m glad you found it, and glad you found it useful, jane. but i’m sorry your husband has gone through so many of the symptoms. eight years of lbd is a very long time, and will have taken its toll both on him, and, i’m sure, on you as well. it profoundly affects all those close to the person afflicted with the condition, and the closer you are, the more its impacts are felt. > it is indeed sad how little is known about dementia with lewy bodies, but hopefully that will continue to improve   i feel there has been incremental improvements, but i am very close to it, and perhaps i am mistaking my own awareness with that of the medical community, in particular, of which i am not a part. > thanks for your continued advocacy, and for suggesting others visit the site. i try to keep it as current as possible, with very frequent summaries and news via facebook   i just can’t keep up with new articles as frequently as i’d like. > strength to you, jane   may your journey be the best it possibly can be. timothy hudson my husband is only 74 and he was diagnosed 10 years ago with lbd. he has been in a nursing home for 3 years and i believe he is in stage 5. most worrysome is he now sleeps all day until 4 pm then sleeps through the night. he’ll do that several days in a row then is relatively alert for a few days then starts over again. it’s like he is recharging his brain. your article helped to figure out what stage he is in. he is on a drug which slows down the progression of the disease. it has been a long tough road. i still go daily to help with his care because there is not enough staff to care for him properly. sorry for the long dark of lewy that you’ve experienced with your husband’s condition, joan. ten years is a very long time, and i’m sure the last three while he’s been in the nh have had countless challenges, even if different than having him at home, i know that doesn’t necessarily make it any less challenging. as for his long sleeping periods, i experienced that with my loved one as well. and your analogy of it seeming like he is “recharging his brain” is very apt to me. i don’t think the exact reasons for the almost narcolepsy like periods is known, medically, but certainly for us as well, during the latter years, extended sleeping seemed to be absolutely necessary for her to be able to function as well as possible. it is a long, tough road indeed. you are truly his angel by going daily to help him. it is making his journey the best it possibly can be, and that is no small thing. you are making a difference, a real difference that inspires others, as well. strength to you, joan. timothy hudson could you please tell me what drug he is on and the dosage? hi lenore   i’m not exactly sure what your question refers to. medications and dosages differ vastly, and this’d not be an appropriate place to discuss it. i hope you can find some information elsewhere. i would suggest you join on of the big facebook carer groups to see what others might experience. the two i am affiliated with are “levy body dementia carers” and “levy body dementia support group.” i highly recommend both. hope you get some answers. strength to you! timothy hudson. thank you for all of the information on this site. i was diagnosed with lewy body dementia just three weeks ago and it seems to be progressing quickly….i am having very intense balance issues. i am only 59 years old. the neurologist seems surprised that i am having such intense balance issues so quickly. looking back i have had some of the symptoms for a couple of years. anyone else experience this? thank you. hi dean: very sorry for your diagnosis. early onset has its own special challenges. i’m not a doctor so i can’t comment on any diagnostic elements, but certainly there are people who have balance issues very early. i’d suggest you connect with an online facebook group for persons with the condition   they’d be best placed to comment on this further. perhaps the best group for persons with living with lewy body dementia is forget me not lewy body dementia (https://www.facebook.com/groups/1466664356939288/) which is run by people in a similar situation. there are other groups as well, which are much bigger, but have a higher percentage of carers, rather than those diagnosed. may your journey be the best possible, you find the best solutions, and that you find blessings and insight along the way. strength to you, timothy hudson. hello dean my husband was diagnosed at the age of 59 as well. he had been falling ,hands shaking and he noticed his writing skills and word choices were declining. he retired from his law practice immediately and just this month retired from the university where he was a professor. he is 62. my husband has had severe sleep apnea since his 30’s that went untreated . also he had a double knee replacement at 55 ,after surgery he had to much oxygen loss for to long. i would like to add he has had a familiar tremor in his hand since a little kid. i feel the oxygen issue brought lbd on at a much younger age . his brain has significantly shrank in size for someone is age as well. lewy sucks. please find joy in everyday and everyday will be different. september 2016 my husband asked his neurologist what she thought his life expectancy was she told him 2  5 years. so we had changed our life plans and trying to live our dream as we can . thanks so much for this information. my husband was diagnosed with parkinson’s in 2005 which seems to be the easy diagnosis. he had bee suffering from depression and night terrors for about seven years before the diagnosis of parkinson’s. as the disease progressed, it took on all the characteristics of lewy body dementia. he experienced visual hallucinations that he could rationalize as not real as the disease progressed to steal away other abilities. the real tough battle began in 2014 when he was involved in an accident that crushed his sternum and he had to have surgery. the dementia just exploded. the hallucinations went wild! he was in the hospital in restraints for six weeks. sometimes those restraints were on his hands and feet. that was the beginning of the nightmare that included two visits to the phyc ward and i won’t even describe that horror. for a short five months i was able to manage him at home before his behavior became aggressive. we have been in memory care for three years now and it has definitely been a challenge because of the behavioral issues. i am so thankful to find this information on the stages of this disease. we appear to be in stage five. i agree with the fact of the fluctuating of the disease. i would call it an emotional roller coaster. it is also helpful and encouraging to read of others experiences with this disease. you can only understand it if you live it! hi liz. what a rough ride you and your husband have had. to me, i think that hospital stays accompany the worst, and most precipitous declines. i can’t count the number of peers who’ve experienced terrible outcomes while in the hospital. it’s a necessity for sure, in many cases, but the interaction of lbd with trauma, and/or the hospital environment (and anaesthetics, changes of meds, etc) is often punishing beyond belief. i hope that things settle somewhat for you. and that on the “emotional roller coaster” as you call it, that you find some times when that particular roller coaster slows down and becomes less frightening. strength to you! timothy hudson. hi i am just wondering how long stage 5 can last. my dad was just put into a nursing home about 6 weeks ago. he is def a stage 5 except he can swallow. his talking is very soft and when we can hear him it’s because we are up very close but what he says just doesn’t make any sense. i know my dad must hate being like he is. there are days he will eat most of what is given to him, of course he has to be fed. but there are days he has zero interest in food as well. he will have 3 5 days where he doesn’t eat much at all then a day or two where he eats a lot. i am just so confused with this current stage he is in. i dont think he is ready for hospice but he has lost about 12 pounds the last 6 weeks. hi michelle. that’s a tough situation   but i would never be confident of what stage a person is at   it’s just too variable. the article is carefully written to ensure that the potential for shifting between stages, forwards and backwards, jumping or skipping phases, etc., is very, very common. despite that, it’s human nature to want to put a finite horizon on things. i don’t think it’s possible to be that certain, unfortunately. i hope that despite the challenges you are experiencing, and the unhappiness this must bring your dad, that there are periods of grace, and that he and you are lifted by the love you share. you will make an incomparable difference for him by your presence. may your confusion be replaced with whatever acceptance you can muster   that doesn’t mean giving up, just recognizing things cannot all be changed, and working the best possible with things as they are. it is critical to sustain yourself. strength and acceptance to you, timothy hudson. my wife began showing signs about eight months ago. she was hearing things at night in our attic and actually believed someone was living there. she also thought she was seeing snakes in our yard. i placed a lock on the attic door and the one bedroom door so now she thinks she is hearing someone downstairs at night and almost every night she thinks someone is trying to break into the house. and worst of all she has developed a friendship with someone on instagram who has gotten her to send money on several occasions to a location in nigeria. he tells her he is dying and needs money for medical attention. about two weeks ago she saw a neurologist/dementia researcher at our state medical university. after a general discussion of her symptoms he did several cognitive tests. he said that exact diagnosis is difficult but the test did not fit the profile of alzheimer’s but did fit lbd. we are scheduled to see him again in february. my wife is 65. has anyone experienced anything like this? that would be extremely upsetting, fred, and i’m sorry she is having so much difficulty, and that you are as well. this does not sound uncommon, unfortunately. i’m sure you’ve secured the computer and finances already, but that is risky on one level indeed. as far as the diagnosis, many people are misdiagnosed, and no wonder: it is devilishly hard to know which symptoms are from which condition, because there are many other variables including vascular issues, drug interactions, mental health, and a large number of possible dementias. i hope you can get clarity on her condition, so that you can get the best treatment for whatever it is, and so that your quality of life can be the best it possibly can be. it is a hard road. but you make a difference in your wife’s life, fred. that is a powerful gift. strength to you! timothy hudson my husband, now age 67, had emergency open heart surgery in august of 2016 his heart stopped, he lost a lot of blood and almost died. in november, 2016, he had his gall bladder removed. another month later he was back to work and driving but was losing a lot of weight in spite of eating more than ever. he never seemed to fully regain his strength and we noticed some cognitive decline. he then had a hernia repair surgery on september 15 this year. we had taken a long car trip in june he drove on narrow mountain roads, we went on our annual vacation in late august i drove that time. in late september following the hernia repair and noticing worsening cognitive issues, a neurologist incorrectly diagnosed him with vascular dementia. we turned to holistic medicine to treat it and were considering hyperbaric oxygen therapy, but his decline accelerated. on november 3 this year less than one month ago, he was still being cared for by me at home, but it was becoming too difficult, and suddenly he became incontinent. we took him to the hospital where he was diagnosed with lewy body dementia. he was still able to walk with a walker a short distance. we sadly decided he could not come home again as i could no longer provide the care he needed, and i am still working every morning and could not leave him alone. he was transferred to a nursing facility on november 8. the very next day, the staff could no longer transfer him into any kind of chair and he is now bedridden. we hope to obtain a wheelchair that reclines. he totally fits the stage 4 category now, and has entered stage 5. so, from the first clear symptoms we noticed during the spring of 2017 when he was working and driving, until today when he is in stage 4/5, is a shockingly fast decline in about 7 months. he is still eating, but having difficulty chewing and has to be spoon fed. we are concerned about bed sores given his weight of 125 pounds. skin on bone. we are starting funeral plans. i cry all day long. visiting family and friends leave his room in tears. such a kind, wonderful man. such a horrible disease. thank you for this article. what a punishing, relentlessly rapid transition you and your husband have experienced, jean. i am so sorry for you and your whole family. this is unusual, indeed, but the element of vascular dementia being a contributor certainly sounds possible to me, a non doctor, since he’s had so many surgeries. i’ve also noticed there appears to be a correlation with anaesthesia and subsequent cognitive declines. it could be so many things, and may be that the trauma and/or underlying health condition that required the surgery brings on an otherwise compensated for cognitive issues, as well as the stay in hospital which can be such an overwhelming, confusing and difficult experience. > you’re doing your very best, and are making an incomparable difference for your husband   making things the best they can be in a very bad situation. it is wonderful that people are coming to visit, despite how upsetting it is. that is incredible, and i hope it will continue. > strength to you, jean   and peace to your husband. timothy hudson. my father is a cross between 3 and 4 very sad and very stressful. thank you for putting this out there. sadness and stress seem to be a constant companion of the carer of someone with lewy body dementia, unfortunately, michael. i hope you will also feel that there are some small “wins” as well. throughout the years i was a carer for my loved one, every day when i awoke, i would say to myself “today, i will make a difference.” sometimes i’d say it several times during the day, almost like a mantra. i came to know that i couldn’t solve or cure, but i certainly could bring things up from their worst outcomes. and that was a powerful realization, and helped sustain me for years. i still say it. you could as well   because everything you do for your father does, indeed, make a difference. an incomparable difference. > glad you found the article helpful. there are many more here that may help you as a carer. strength to you! timothy hudson. yesterday my friend told me he has a degenerative brain disease. he did not want to talk about it much, though i do know his symptoms. he has tremors, problems with focusing, hallucinations, trouble sleeping, and depression. he also has had a lot of weight gain and loss over the years i’ve known him and problems with speaking at times (mumbling, looking for words, etc.). however, my friend is 23 years old and i know lbd is typically in a much older population. is it possible for him to have this? if not, do you know what he could have? at 23 years old, dementia with lewy bodies is highly, highly unlikely. but it is not absolutely impossible from what i know, a non doctor. if you can continue to encourage your friend to seek the best medical help possible, that would be what i consider the best thing to do for him. there are an almost infinite number of possibilities about the cause, and potential diagnosis, since so many elements can interact. i always wanted a nice, clean name to put on whatever i was dealing with, but that often will be elusive. it must be hard for you to witness. strength! timothy hudson. he may have parkinson’s i was diagnosed with lbd on oct 20 of this year, just over a month ago. it seems to be progressing very quickly. when told of symptoms, my wife has said that i have had some of the symptoms 2 years ago. has anyone else experienced it happening so quickly? i have strong faith and have had a good life and have wonderful family and friends supporting me. i am 59 years old. i am just amazed that my balance and cognitive issues have deteriorated so quickly. very sorry for how things are quickly progressing for you, dean. i’m happy to hear you have so many wonderful friends and supportive family, and that your faith is strong. those things will make an enormous difference. unfortunately, many people (certainly not the majority) experience the condition early on, as you are. i hope you’re getting good care and medical support, if not perhaps a friend or family member can accelerate and amplify the advocacy needed. doctors are often very busy, and we need to be assertive to get things rolling effectively. this is not easy if your cognition is affected. please accept the help of others, it will help you, but it will also help them by knowing you’re getting the best outcome possible. > i would recommend you search out a few facebook groups   living beyond diagnosis, lewy body dementia is a page by a friend in the us who is living with lbd, but his case, and the very slow progression is highly unusual in my experience, but he and the group are very caring. i’d also suggest that the people helping you join two online facebook support groups (the posts may be too upsetting to you, and tend to be acute issues, not the normal day to day). the groups are “lewy body dementia carers” and “levy body dementia support group.” > may your journey be the best possible, dean. strength to you! timothy hudson. god bless you for putting all this together. thank you! it’s most helpful. best wishes from ireland, anne marie thank you, anne marie! i’m delighted you found this, and that it’s been so helpful for your. and thank you for the best wishes from the emerald isle. right back at you, best wishes to you from the best place in the world (to me, certainly), canada. strength to you! timothy hudson. this article defines my husband. i’m so grateful for information that addresses his situation. he was diagnosed with alzheimer’s disease a year and a half ago. i have learned as much as i could about that disease, but didn’t see many of the symptoms my husband presented. for example, i asked other caregivers about the accusations of infidelity, but none had experienced that. we have a long and faithful marriage and i was devastated by his accusations. you can only imagine the sense of relief i felt just reading phase 1. my husband is well into phase 3. today at an alzheimer’s seminar a very attentive nurse took me aside and suggested the possibility of lewy body disease. she has directed me to a doctor in my area who specializes in lewy body. i will be making an appointment tomorrow and i feel better informed from your article. it is exactly the information i needed to read. thank you! i’m glad you found the article, victoria. but i’m terribly sorry for your husband’s condition. no matter what the specific diagnosis, dementia is such a hard road. it’s good that the nurse suggested lbd, and that you’ve been so proactive to follow up immediately to see if he can be treated. finding the best possible doctor, with the most experience can be transformational. and even if not that profound, it can make the difference between the worst, and the best it can be (which is not always easy to differentiate, but is, regardless). you will make an incomparable difference in his life, victoria. that is very inspirational. may this go the best possible! strength to you. timothy hudson right on, so informative   wish i had found your site and this list earlier   husband was hospitalized for falls, stayed two nights and sent to hospice   had noticed aggression beginning, but not really on your list although, it is one of the things people usually notice and say, he is probably lewy bodies   it was hospice that used the lb name   and i began researching. too late, tho, husband passed two weeks later. your list would have been more helpful and so now i will share it so others can find you sooner than i did. grateful for your work, one day, i pray and will help fight for a cure for this tragic disease. sorry for the loss of your husband, marian. what a difficult trajectory. your hope for a cure is positive, and by sharing the information you’re going to contribute greatly to the journey your fellow carers who are “still in the trenches” now face. i hope you can find renewal now your husband is at peace, and you’re free from the constant worries that come with caring for a loved one with lewy body dementia. > strength to you! timothy hudson. thanks for this. my dad died in oct. he was 86. he was diagnosed with parkinson’s at 82. i suspected he may have lbd at the start when researching but pd was the diagnosis. he was also (i believe incorrectly) diagnosed with psp at one point. the stages correspond with his progression but i never saw the lean. can that be absent? he was at home until 82 and now i look back and can see there were issues (before we knew) with speech, anxiety, paranoia, sleepiness, apathy. if we’d known, we’d never have had his hip replaced which seemed to send him into a rapid decline. although it was a local not general anaesthetic, and he was in pain before. so much is obvious with hindsight. i’m glad he’s at peace and send love to anyone dealing with this, especially if your loved one is young. hi bernie: sorry for the loss of your dad. i’m sure the last period was particularly difficult, but i’m sure your compassion and care made an incomparable difference. > yes, you can definitely have the condition without experiencing the “lewy lean.” it’s common, but not universal. > i would not feel in any way guilty about your choice for the operation on his hip, and its effect on his decline. that choice was made with best intentions, and best knowledge available at the time, so was the right choice. we experienced the same scenario, but at the time of the operations, they were deemed necessary, and despite the apparent acceleration of the decline, they also allowed her to be more mobile for the subsequent years, which i think balanced well with any detriments the operations contributed to. > glad that you’re positive in knowing he’s at peace now, and your sentiment to those caring for others right now is shared. > strength to you and all who loved your dad, bernie. timothy hudson. my father just passed on may 23rd, 2018. he was also 86. he was diagnosed with lbd with parkinson’s & alzeimer’s diseases. he got a urinary tract infection while he was living @ home which put him in the hospital. after that, straight from there, he went to a nursing home because he was getting so much worse. he then got neumonia & had congestive heart failure. about 2 months later he was gone from our lives. i find comfort in telling myself that he didn’t suffer in the end. myself & my mother were blessed with “the long goodbye” as my mother put it. which means he got to live @ home with us caring for him & us coming to terms with our grief. it was very bitter sweet though because we had to watch him suffer through this horribly, unfair disease that literally “eats you alive”. i also take comfort in getting to spend almost every other day with him @ the nursing home (i don’t think he never knew he was even there thank god for that blessing), but my last words were of love so i have that closure. any advice to help guide me through my heartbreaking, unforgiving grief? hi thank you so much for your list it looks like she is in the last stage. she has lost all weight bearing ability, drools, leans to one side, seem to have constant hallucinations. she had not been diagnosed for a long time and we suffered badly as care givers with the paranoia. visiting siblings did not believe that there mum was ill and constantly thought my wife and i were abusing her. she was wrongly later diagnosed with vascular dementia; i was only after her hallucinations became more pronounced that she was diagnosed with lewys. the medication she has been diagnosed with has meant it has been a rollercoaster as each time the lewy has fought back. she is now refusing food due to the hallucinations and has gone from a size 16 to a size 8 uk size and weighs just over 6 stone. until i read this post no one has explained to me about the lewy lean, but it describes my mum exactly. all i can advise anyone reading this post is get the right mental health support early. i wish we had both my wife and both separately were nearly driven to suicide due depression. the doctors we had all seem to say the same thing its dementia what do you want us to do? the general hospital was always in a rush to get rid of her in the uk. we had to fight to get into a dementia assessment unit. thanks again raj very sorry for how things have gone, raj. it’s such a hard road, and all your points are true, and well taken. i echo your last point the most, perhaps   getting mental health support for the carer is highly important. caring for a person with lewy body dementia can take more than one can imagine from your reserve of energy and hope. keeping the best network possible, and seeking support for yourself with a mental health professional before a crisis happens to you will be honouring and helping your loved one as well. and keeping a network of friends and co carers is impossible in many cases, in those situations, as it was for me   i found immense solace and support in online groups. i co administer two on facebook (lewy body dementia carers, and lewy body dementia support group), and these groups were saviours to me, and to countless others. > i hope things can go the best possible, that the paranoia that she heaps on to you and your wife, although caused by the disease, diminishes rapidly. usually that does not last forever. > be proud, raj   you’re doing an incredible thing. truly. strength to you, timothy. sadly today my mom was just diagnosed with this disease or disorder. is truly the saddest day of my life. my mom is 72 and had surgery on her spine: and we just thought the symptoms were a complication from the surgery. as of today she is on a feeding tube could hardly swallow or talk. finally we got the answers we want and can’t blame it on the surgeon anymore, it’s lbd. yet it is much easier to blame it on someone else to blame a disease, one that is going to take my mom‘s life. to come home and research this and hear all the exciting news, or different theories, thoughts, and speculations was hard to read. but to find this website with people that are actually dealing with it, with their loved ones…. thank you for the support in a site to go to. hi suzi   you’re at a particularly difficult point in the progression, where your mom is newly diagnosed. it is utterly overwhelming. take it as slow as you can   you will not be able to take in everything in a short time, especially with her in the hospital right now. my top priority, while in hospital, would be to keep her in the most calm and un chaotic environment as you can in a hospital, and to check with the doctors to ensure that no traditional anti psychotic drugs are used, since they can be catastrophic for a person with lbd. > i hope you will be able to gain information from here, and the many other reliable sources online. and i highly suggest that you join an online support group, and one in person, if you can. these can be truly life saving, because you’ll find that you are not alone at all, and that there are countless others in the same situation, but they’re “invisible” since caring for a loved one with lbd typically means constant vigilance, and varying degrees of isolation. it’s important not to become completely isolated. you deserve support. you mom would want the best for you   honour that wish. > strength to you, suzi. timothy hudson. personally, thank you timothy hudson for being an advocate in a voice to us all, on my thoughts or concerns questions for our loved ones. i thank you for this. you are very welcome, suzi. i am happy to provide whatever help i can. it is such punishing condition, and how it affects our loved ones and all us carers: we need all the help, tips, techniques and information we can get. i am happy you found this site   there’s a lot of information on dementia with lewy bodies online, but much of it is irrelevant. if you’re interested in knowing reliable, useful information on a semi regular basis, i publish at http://www.facebook.com/lewy.ca, and the two support groups i recommend most are on facebook, lewy body dementia carers, and lewy body dementia support group. you may find those to be incredibly helpful. > strength to you! timothy hudson hi, my mum i think is in stage 4 of lbd she was diagnosis about four years and it has been a gradual decline. she is now unable to walk or communicate well and needs 24hr care. my father is the main carer, i help couple of days a week and we have two carers who come in nearly every day. i’ve got to say it’s a struggle and extremely heart wrenching   not sure what comes next, and i understand this may go on for a long time. but for the few moments of her laughing and communicating and with her wicked sense of humour it seems all worth it. good to read about other people’s experiences. hi fiona   thanks for your comments. i’m sorry for your situation, but glad that the four year decline has been gradual, at least. to some, a gradual decline would be a blessing they would do anything to have experienced. it is so fabulous that you’re able to make the most of it, and can still enjoy the few moments laughing with her, communicating and even the remaining ability to convey her wicked sense of humour. it is “all worth it” as you say. long may the times last that are the best they can be, under the circumstances. you’re making her life incomparably better by your presence. > strength to you! timothy hudson. my father passed away from lewy body disease on february 2, 2018. i wish i would’ve found this site during his 8 year battle with this. he was officially diagnosed with lbd on december 5, 2017. it was like a switch flipped off and he started developing more and more of the symptoms in the end stage of lbd. difficult to diagnose, we thought we were dealing with alzheimer’s. everyone with lbd has their own journey i suppose. dad had a fall on december 12th and the stay in the hospital put him in a downward spiral. he never got back to his baseline or even close to it and continued to get worse until he took his last breath 9 days ago. i was convinced he was having tia’s (mini strokes), but it is just the nature of the last phase of the disease. thank you for this informative site as it is a godsend for family and caregivers taking care of loved ones afflicted with this horrific disease. there is no right or wrong way in dealing with this because each day can bring a whole slew of new issues. sometimes, just holding your loved ones hand and telling them everything is ok is the best thing you can do. thank you for your hard work and research in putting together this informative article. sincerely, julie i am sorry for your loss, julie, but thank you for the great insights you present. you have been able to convey a difficult journey very soon after its end, which must be so very hard for you to reflect upon so soon. you’re absolutely right that sometimes “just holding your loved ones hand and telling them everything is ok is the best thing you can do.” i am convinced that our loved ones can hear and perceive what we say, and are comforted by our voices long after they are able to communicate it in traditional ways. you did a good, powerful thing for your father. > thank you for your kind words, and may they reflect back upon you, with lighter horizons ahead. > strength to you, timothy hudson. my father, george, passed away on may 23rd, 2018 with a diagnosis of lbd with parkinson’s/alzeimer’s disease’s. his “switch” as you say “flipped off” (it was like a series of mini strokes that got worse and worse). he fell a lot and on his last fall he got staples in his head, and it was so heartbreakingly downhill from there   to watch, not to mention the anguish he was dealing with. he was able to live at home and we were blessed with what my mom called “the long goodbye” until he got a urinary tract infection (uti) which put him in the hospital. my mother and i were not able to care for him anymore because he had gotten so much worse. “the long goodbye” is very bittersweet because you are given the opportunity to care for your loved one while you are dealing with, and coming to terms with, your own grief. it’s definitely one of the most excrutiatingly, emotionally, mentally, horribly, unfair, etc. to watch this thing literally “eat your father alive”. we had to put him in a nursing home straight away of which i think (we pray) he never knew he was in to stay   he only thought he was going to get better and then go home. he was gone two months later, but i take comfort in that my last words to him were of love. along with my loving care helping the nurses and hospice at the nursing home with him. if you can give me any advice on how to deal with this i would be much appreciative. i am so sorry for the loss of your father. first: thank you timothy for the wonderfully helpful information and service you provide to those of us in need. second: a suggestion for jean’s posting of 26 november 2017. my wife has a barton chair that reclines to be horizontally flat. this permits two people to transfer her by sliding her horizontally from her hospital bed to the barton chair (and vice versa). this transfer can be accomplished either with a slip sheet or, in my wife’s case, on two large smooth bottomed pads that are already there because of her incontinence. then the chair back can be raised to an elevation that is comfortable for the individual. as the back is raised, the leg support moves downward at the same time. the leg support can be raised, as is needed in my wife’s case, separately up to horizontal. the chair can then be pushed around and, if adequate transportation is available to transport large wheelchairs, to another location such as a physician’s office, church, etc. (the barton chair can be obtained with a mechanism that permits one person to do the transfers. we have the mechanism but do not use it.) with very careful wording accompanying a physician’s notes, the barton chair can be obtained through medicare. if needed, i have a set of photos of the barton chair on one page that show the chair in the various positions referred to above. third: my wife has very delicate skin at 87. if anyone concerned with bed/pressure sores does not already have an air mattress, we obtained a high quality one with an air pump that operates full time. with the air mattress, no more bed/pressure sores. as with the barton chair, in the us an air mattress can be obtained through medicare. thank you for these excellent suggestions, edward. your other post is helpful context about your long road with your wife’s lewy body dementia, osteoarthritis, fibromyalgia, and more. the specifics you include here will be very useful for people to understand and know   and your suggestion to people that the carefully word the request to get medicare to pay for the barton chair is excellent advice. often these requests are made at a time of crisis, so not much attention can be paid to those types of details at those times, so may be denied when otherwise they might be approved. and that can mean a significant amount of money. > thank you for your compassion, your tips and suggestions, and your inspiring goodness. strength to you! timothy hudson mr. hudson my wife of 54 years at 87 has more than one form of dementia. but the most obvious is lbd. your article above and the references are by far the most informative on lbd that i have found. your article is most appreciated. i cared for my wife at home as long as i could. she is now in an excellent adult family home where she is receiving wonderful care. the owner and staff call her grandma that she enjoys. i visit every day and help feed her. my wife also has very advanced severe osteoarthritis and fibromyalgia that have been progressing since about the late 1970s/very early 1980s. the osteoarthritis has finally reached the stage where she can no longer sit in her regular wheelchair and now uses a barton chair. with her skin becoming quote fragile, she now has an air mattress on a hospital bed. the barton chair, hospital bed and air mattress were all obtained through medicare. a barton chair and/or air mattress might be of use for some of the earlier posts by others. (see my earlier post re the barton chair and air mattress.) thank you again. edward you are indeed your wife’s angel, edward: so tenacious, steadfast and caring. you’ve had such a long hard road, starting in the ’70’s, it makes it even more inspiring. your suggestions about the barton chair and air mattress will help others for sure. i think these are often not understood. they are not always prohibitively expensive, either. i have even seen a versatile chair of this type, complete with a roho, air pocket cushion, in a salvation army store for an incredibly low price (might even have been free if presented with a legitimate request). > i think those two items can make a huge difference, and hope that both the air powered mattress that distributes pressure constantly and the barton type chair will, indeed, help others. thank you for your excellent suggestion, and for your inspirational care for your wife. it makes an incomparable difference. > strength to you, edward. timothy hudson my husband was diagnosed with early onset alzheimer’s five years ago. the past 4 years have been difficult. he started having rem sleep problems and problems walking and performing task he knows how to perform. he retired 10 months ago and it’s been a down hill ride every since. last week he was diagnosed with levy body dementia and we where told he has progress quite rapidly since he retired. this has helped me to understand where he really is. i was a trained cna who took care of only alzheimer’s patient in home health. it’s a whole different world for me to go into someone’s home and train them how to care for there loved one and walk away. now i’m the caregiver, and i’m amazed at how little i taught my client’s families about how to care for there loved ones. thank you so much for this break down. it has helped me so much just reading it today. margo hi margo: thanks for your note. very sorry for what’s happening with your husband, and how fast the decline has been. that’s a particularly profound insight about how caring for a loved one with dementia is so vastly different than providing training or assisting someone who is caring for someone you don’t know personally, and how much more difficult it is to provide direct care to a loved one, and to witness and experience the decline first hand, 24/7. i’m glad the article has been helpful, and i hope the journey you share with your husband is the best it can possibly be, under the circumstances. all you do will make an incomparable difference. strength to you! timothy hudson thanks, timothy. my husband is in stage 5 now and on hospice. i don’t really understand but feel very fortunate that he has never had delusions. hallucinations, or significant. mostly he just sleeps. have you heard of others having all the physical symptoms but not the mental ones? he was diagnosed 3 years ago. hi anita   usually that’s pure parkinson’s disease, if there are no cognitive issues. certainly the vast majority of people i know with dementia with lewy bodies have at least some delusions and hallucinations. but for some, the hallucinations are mild and innocuous, so may not be worth remarking on to you. if you believed there was a cat in the room, and you liked cats, you might say nothing about it and find it unremarkable. and for many people, small animals and children are the things they have hallucinations of, and so don’t report them. i know if i saw a cat or rabbit in my yard, i’d think it was normal. i am sorry things have progressed so far, and that your husband is now on hospice. but i have heard great things about their service, and i know that you have been his unwavering advocate, and have been so steadfast throughout that you have made his difficult journey the best it possibly can be. truly you are his angel. strength to you always, anita. timothy. wow! i feel as though i have entered the twilight zone in less than a month. my husband has changed so rapidly. he is having hallucinations all the time. he sees snakes, rats and now bats. he thinks there are rats in our bed and jumps up screaming and chasing them down the hall. he sees them even in the day time. snakes are mostly on the roads as we travel to town and home. he will not enter his bathroom now because he can hear their wings fluttering from the hall. if the door is open, he sees them and is afraid to enter. he has always been extremely afraid of all three of these animals since he was a small boy. he now gets up and roams the house in the middle of the night and is afraid to go to sleep. i have to sit up in bed and read tell he goes to sleep. he will wake up to see if i’m still there. once i go to sleep he’s up roaming. i’m so afraid he will fall due to his poor balance and posture now. his eating habits are also on a decline, and i fuss at him to try and eat more. i never had a patient who progressed this fast. i promised him i would always take care of him at home. our days are not as rough and we enjoy our talks and watching westerns together, to pass the time away. on good days i take him for long rides in the country or in the mountains. four of our five children live out of state. the daughter who does live here is a hospice rn and patient coordinator for our local hospitals and keeps a check on him all the time, and is also concerned about his fast decline. he retired after 52 years in the auto parts store business with his brother. he was having too much trouble keeping up with his responsibilities there. so the store was sold and they both went home. we talk a lot and have agreed to take it one day at a time. after all who knows what god has planned for tomorrow. it sounds like you’re doing wonders for your husband, margo. truly. i don’t think there’s anything further you could be doing   keeping him as calm as possible, and at home as long as possible will make a incomparable difference. and your encouraging him to eat properly, taking him for drives, and keeping him active with discussions will also contribute greatly to his continued good condition, under the circumstances. i just hope that you’ll be able to recognize if you are unable to continue: caring for someone with lbd takes a great toll on our health   physically and mentally, and i’m glad you have one daughter close by, at least. the two of you should keep an eye on each other to make sure things are manageable. sometimes things progress so quickly a big change has to be made suddenly. looking for options now, even if you never use them, is prudent. here’s to your continued health, to things being the best they possibly can be for your husband, and for a reduction of his hallucinations of the snakes, rats and bats. that must be very upsetting for him, and difficult for you to calm him as well. strength to you, margo. you’re doing a wonderful thing. timothy hudson my father is 77 and until about two months ago seems to be pretty healthy aside from some mild moderate memory loss and stiffness of his joints first thing in the morning. it seemed almost sudden that he began complaining of confusion. at first we thought he was just being anxious of worried about getting older??? but soon it became apparent that something was really off. he’s not having significant trouble walking, he is studdering when he speaks at times, sleeping more, inhibitions are gone and he’s very emotional. he s also has delusions. used to love reading but he can’t follow a story line anymore. this all happened literally in the past 2 3 months. he still doesn’t have a diagnosis, but it’s looking more and more like lbd. is it possible that the disease can progress that fast? i am still in denial. i am still hanging onto some hope that this will go away and my old dad will come back. our hearts are breaking . he’s still got so much life to live. hi cristin   super sorry to hear how fast things are going. first, though, he needs to see a well informed specialist, neurologist, psychologist or psychiatrist (or a combination). this may be difficult, but is critical. there are some conditions that are reversible, but regardless, he needs a proper diagnosis to get proper treatment. keep in mind that there are at least 100 dementias, and that the last bit of research i saw concluded that 78% of people with one dementia have at least one more simultaneously, so the exact condition can be very hard to accurately diagnose, as you can imagine. it is possible for things to go that fast, although in most cases like this that i have known of personally, they’ve been for early onset. but with proper treatment, you may be able to significantly slow this, or buy back some of his old self. with your hearts breaking, i know it’s hard, but you will need to gather your resolve, ingenuity and resourcefulness to get him in to see a specialist asap. this way, he will have as much life to live as possible, with the best quality of life throughout. strength to you. timothy hudson. according to this wonderful informative comprehensive article, my brother who was diagnosed ten years ago with parkinson’s, then eight years ago with lewy bodies is at stage five. his wife is totally devoted to him and his care. a few years ago we persuaded her to have a short break, put him in respite care for seven days, it was not a happy experience. the respite care home did not seem to comprehend that he could not feed himself. food was left in front of him, cold. he was left in soiled clothing. on her second visit she found him wedged behind the toilet door in his room. after three days his wife took him home, has not left his side since. she does have agencies involved now, but in the early stages it was a struggle, she had to pay for the appropriate bed out of her own money. anyway, my reason for leaving this post is to thank the original author of this article and say how accurate the staging process has been. i wish i had found it earlier. thanks for your note, alan. sorry for how things have gone with your brother, and for how hard it’s been on his wife, and you   doubtless. your tale of poor care is not uncommon. a great deal of preparation, orientation and coaching is required (as well as preliminary assessment, getting reports from others with loved ones at the facility, and vigilance during the stay). certainly, many are not this bad   but it must’ve made it very difficult for your family, and all involved, to have had no respite of any significance for so long. i hope things go the best they can, under the circumstances. strength to you, and your sister in law, and peace to your brother. timothy hudson god bless you for your article. my dad is 83 and was diagnosed 4 year’s ago, with lewy body dementia. i feel that he is experiencing stage 5 symptoms. he now is unable to walk, feed himself, and he has a permanent catheter. his voice is a whisper and unable to say just a few words. he has hallucinations frequently and is sleeping a lot. his body is fragile and his skin is easily tearing and bruised. he has the lewy body lean and drools somewhat. his eating has become limited. we have kept him at home until 2 weeks ago where we had to place him in a memory care living facility. we still have his morning caregiver whom still goes and gets him up into his lift care. makes sure he tries to eat along with my mother, sister and i alternate times to be with him throughout the day every day. my dad was a very intelligent man who took complete care of himself and his family and to see him go from a functioning individual too a weak non functioning man breaks my heart. placing him because of the inability to provide all the care he needs has been gut wrenching. i have struggled with “are we doing all we can?” and trying to assure myself that they providing good enough care for him. these are the hardest times of my life to feel so helpless but yet knowing that god will never leave or forsake us. sincere thanks for your wonderful article along with reading other’s experiences has brought much comfort as i hold onto those days where i see rays of love in the eyes of my father. it is heartbreaking, indeed, spring. it sounds to me like you’re doing absolutely everything right, in a situation that’s all wrong. by the daily care of your dad by you, your sister and your mom, his life will be the best it possibly can be. it will also ensure that the staff is attentive, since they’ll know there’s “eyes on them” regularly. > long may you have comfort from those days where you see the rays of love in the eyes of your father. i’m sure you’ll remember and cherish those forever. you are doing a good, powerful thing for him. strength to you! timothy hudson my mother hasn’t officially diagnosed yet, i am taking her to the doctor next week. i have been in denial i think. she has a majority of the symptoms though (delusions being the absolute worst!!). i think we are in stage three. it is freaky that it says that caregivers are likely to have health issues in stage three as i was just diagnosed with two autoimmune diseases! (and i have an issue with my ankle joint!) i have no help whatsoever, so i hope that i can sort something out when she is diagnosed. (i am still holding out hope that maybe it’s her thyroid and low vitamin b12. i feel i can be in denial for another week, it won’t hurt). thank you for this information   i have been searching the internet for something to help me understand it a bit better and this was perfect. sorry for your autoimmune disease diagnosis, emily. that’s super rough. it makes caring even more difficult, and i am sure that the stresses of caregiving contribute to the development of many ailments in the carer. > i’m glad the information was useful, and like you, i hope that the changes in your mother are due to something more easily treatable than lbd, like b12 deficiency or normal pressure hydrocephaly. these are surprisingly common, and often go undiagnosed. > strength to you, and health! timothy hudson emily, please consider getting home health care people to hire to help you. one person can not care for a person with lewy bodies all by their self. your health has already suffered and i am sure that your mother would not want that. i wish you and your mom all of the best and please make sure to take time out for yourself to relax and to do things for your well being. because my husband’s father had dementia with lewy bodies, we are schooled in the slow onset and see changes in my husband, age 63. we are trying to get the dat scan test approved by insurance to verify dlb. i am wondering how the long term disability works when you can’t get on medicare until age 65. he is still working but making mistakes. it’s a time of worry. that’s a tough situation, peggy. very sorry for what happened to your father in law, and what appears to now be happening with your husband. there is evidence for some genetic connections, which is worrisome for anyone with a parent who had lbd (i’m in this situation as well). but keep in mind that there are countless other things that can have similar outcomes, so i hope you can get a definitive diagnosis, and that it’s not lbd, but if it is, you’re well prepared to make things the best they possibly can be. as you say, “a time of worry,” indeed. strength and healing to you and your husband. timothy hudson. here is what this disease does to you….i stumbled across this site and see that i have posted on here twice and don’t remember doing it…..wow! blessings to all of you…. well, dean   it’s no surprise, and don’t beat yourself up too much. there’s countless websites with information on dementia with lewy bodies, and the comments on this particular article are now over 100, so it’s easy to miss. and stress, of which there is far too much when dealing with lbd, also affects memory, temporarily at least. likewise, blessings to you   and strength, of course! timothy hudson hi! thank you for your “phase” descriptions. it gives me an idea of what to look for as my dad’s lbd progresses. chester is 92 years old and was diagnosed with alzheimer’s disease 3 years ago. he’s not on any medications and until recently, he seemed to be doing okay for his age. i kept reading everything on alzheimer’s disease and a lot of it just didn’t fit in with my dad’s condition. i was getting a lot of information on woman but next to nothing on men. i started to look around at different dementia’s and when i found lbd, i realized that’s what he has. he fell and hit his head about 2 months ago and since that time, i think he’s not doing as well. he never seemed to think clearly after the fall. he has good days and bad days, but there have been more bad days lately. i believe he’s entering stage four of lewy body dementia. my question is, at 92 is there a greater likelihood of lbd progressing more rapidly? he is in an independent living senior apartment at the moment. i’m wondering if i may have to place him in assisted living by the fall. his walking is getting worse and he refuses to use a cane or walker. he’s very defiant. he has the “masked, blank” look all the time and he plays with his tongue a lot. thanks to everyone who has posted on this site. all the experiences of other people are helpful. sorry for the decline in your father, mary. in my experience, a fall is so often catastrophic. and they’re close to unavaidable with the postural instability that is a hallmark symptom of dementia with lewy bodies. still, if he’s 92, and living in an independent living apartment, he’s done incredibly well under the circumstances. > as to your question about a speedier decline at an advanced age, i can only speak from my experience, not as a medical professional: i have observed that, in most of the cases i’ve known directly, the earlier onset cases seem to progress more quickly. but that’s purely anectdotal. one thing that may increase the perceived rate of decline for a frail, elderly person with lbd (or any dementia) is that other medical conditions may contribute to the decline, including reduced physical activity and socialization, cardio pulmonary impairment, dehydration, poor diet, vitamin b12 deficiency, and the combination of other dementias, etc. > i would certainly see if he’d be willing to move into a situation with more care, but you are wise to be respectful of his need for independence. that is critical to many people’s sense of self. and whatever you, and any other family and friends, can do to spend time with him will make a difference. we all greatly benefit from compassionate advocacy and companionship. > strength to you! timothy hudson thank you so much for your response. any input is helpful. i know that there isn’t one clear cut answer to any of these situations. but just having an idea of what other caregivers and researchers have observed is so helpful. one day at a time… thanks again! mary you’re doing a very good thing for your father, mary. one day at a time, indeed! may as many of those days be ones where you are able to recognize the difference you are making. > strength! timothy hudson it’s been almost a month now and things have changed. my husband wanted to go see our daughter’s new house in fort myers, florida. i asked his doctor and he said i could take him   just stop a lot, so he could walk around. well i took him all by myself we spent a week in florida. the trip down there was rough on us both. but the trip back was awful on him. he could not walk at all after riding for two hours. he hallucinated and thought drones where chasing us to kill us. needless to say the trip was extremely hard on him. after being home one week our kids built a ramp to help me get him out of the house, and the doctor ordered a wheelchair for him. his doctor and daughter decided to bring in heartlight hospices for palliative care for him. it hard for me to get him in my suv now, and to take him places as often as i was before. i’m planing to do only one trip a week now, that’s all. it’s weird   his memory seems the same but his body is so weak. they ordered oxygen as well because his oxygen level is lower than normal. he is also a heart patient after a heart attack in 2008 after an atrial fibrillation episode, not to mention a prostate cancer serviver. he thinks he will bounce back from this as well. his sense of humor gets me through each day. my new motto is “if i don’t laugh i’ll cry” i bet that trip to florida was not only difficult on him, margo, but probably even more difficult on you! i hope you recovered from it quickly   that’s a lot of stress. i do not recommend really any travel with a person with lbd because the change in routine, even when positive, often causes behavioural changes which are often more than a carer can manage with, as the hallucinations about the drones indicates, his physical decline, inability to walk etc. > i think having palliative care consulting and providing assistance is a good idea. it can be transformative. > and it truly is a wonder that he, and you have retained your sense of humour. in our own case, that was probably the most important positive element of the lbd journey, which is otherwise quite unrelentingly hard. > hope you can keep up the laughter! strength to you. timothy hudson my husband has been diagnosed with lbd based on a mini mental test and hallucinations. he has no physical symptoms and functions well with adl’s etc. we are trying to decide whether to have an eeg to make the diagnosis more definitive. do you find that the patient of this terrible disease usually want to know what the diagnosis and prognosis is? i would like to keep him at home as long as possible. there are facilities in the area that have a waiting list for independent living that we could both move to when available allowing him to have assess to memory care when needed at the same location. my concern is that the stages will come quickly and the assistance with care will not be available. i am surprised that caregivers on this forum did not speak to the tremendous cost of services in the home and facilities. the unpredictability of the disease makes it hard to make plans for his welfare. do you find that there are medications to slow the disease or at least symptoms? i salute the many caregivers on this site for the tremendous service they have given. i hope i can do as well for the one that i love. thanks for sharing. glad that his symptoms have not also included the physical aspects, frances. hopefully they won’t, ever. they typically present in varying amounts, and the variability is right across an extremely broad spectrum from none, to profound parkinsonism physicality. as to your questions: 1. my understanding is that an eeg will not confirm lbd, just rule out things like vascular issues, tumour, etc. and keeping in mind the most recent study i’ve seen shows 78% of people with any dementia actually has a combination of more than one. 2. i would gauge whether you disclose the diagnosis and prognosis based on your measured, compassionate assessment of whether it would do the individual any good to know. there are too many variables to suggest any hard and fast “rule.” for some, full disclosure is imperative, for others, it’s best not to say anything, since the realities of the condition can be extremely depressing and may seem hopeless, and that may make things worse. 3. the costs of care are staggering. paid care, whether in the home or in a facility, for additional care is wildly expensive. to have someone in home in toronto, for example, to have people to provide 24 7 care is well over $100,000cdn. far beyond the reach of most. keep in mind, though, that in home care can often be procured through various means, many of which may be significantly less expensive, per hour, than the rates typically charged by a facility. i believe that for us, it was less expensive to modify and equip the home, to do all we could personally, and hire additional help in the home, keeping her there ’til the end, than any facility could’ve provided. and in our case, there was zero doubt to me that she benefited greatly by being home. 4. the unpredictability is, indeed, hard   if not impossible   to deal with. but you’re doing an incredible thing, and i know you will continue to, no matter what your choices are in future. your compassion will guide your choices. > like you, i salute the tremendous service so many give, selflessly, to their loved ones, frances. but i would also caution you, and all, to make sure that you are, in fact, able to provide the care needed, without catastrophic harm to your own health   it may be heartbreaking to place your loved one out of the home, but it may be heart saving to do so, which will allow you to continue to care in the best, and most effective and impactful ways possible. > strength to you! timothy hudson i have known that i have lewy body since dec 2014 when i forced my hr to get me into a neurologist asap after the gp said he didn’t have a diagnosis (big ten school with huge hospital). the very next day i saw the neurologist who confirmed lewy body. i think that early diagnosis and meds and alternative eastern meds and organic food have slowed the progress. in fact, my cognition has improved. i can check everything in stage 1 and about 1/2 if stage 2. the parkinson symptoms are taking hold. i suspect i will get to 6 years instead of 7 because i don’t want allow nature to take its course as much as legally possible. sounds like you’re doing all the right things, vicki. i’d add that whatever exercise you can do will make a big difference. i am convinced that the extended period of good condition that my lo experienced had a great deal to do with daily activity. that, and extra hydration, calm, consistent environment, and appropriate socialization. those things and what you’re doing already. > here’s to you breaking some records for duration with quality of life! strength to you. timothy hudson hi my dad is 75, he was diagnosed with parkinsonisms in january 2018 after a fall, and then in march with vascular and parkinson’s. now, last friday he was diagnosed with lewy body dementia, and i have looked at many pages in the last 5 days since diagnosis and believe dad is in stage 4, starting or declining into stage 5. it is so hard! in last 4 months he has deteriorated and is now incapable doing what he could do 6 months ago. i’m so shocked and saddened by this all. i have moved him into nursing home as his care needs are greater then what i am capable of providing   but it breaks my heart, as at diagnosis they said there’s nothing they can do, and i’m not sure if dad understands this. i’ve had to tell his brothers and sisters, my brothers and sisters, cousins etc. it’s heartbreaking! i feel sick constantly and just helpless as theres nothing i can do 🙁 i just cannot believe his decline in last 12 months, and the last 4 have happened so rapid its like its not even him 🙁 that is tragic indeed. however, i would not just accept the doctors saying “there’s nothing they can do.” there may be nothing those doctors can do, but i believe that in almost all cases, something can, indeed, be done to improve the quality of life of a person with lbd. it might be small, and almost imperceptible, but i hope you’ll be able to find that improvement, somehow. and even if medicine won’t do it, your presence and advocacy and companionship will make more difference than anything to your dad. > strength to you, donna. timothy hudson hi donna, i’m so sorry to hear about your dad. i sounds like your father is declining quickly which must be very hard on you, but the alternative is to see him not be able to function as the years go by. my dad is 92 and is still in an independent living apartment. he is unwilling to move into assisted living and at the moment, is on the down side of the rollercoaster. unable to eat and is very agitated. by next week i suspect he’ll be better  this has been going on for years, three good weeks, one bad. i’m on my own as far as his care goes. i hope you know that you’re giving your father the gift of time and care. my dad lives in a really nice facility and i’m shocked that so many residents never get a visit from a relative or friend. i wish you and your father all the best in this journey and just know you’ll get through this. take care  hi donna, my dad died of dementia with lewy bodies and now my mom is about in stage 4. it went from stage 3 to 4 after a hip replacement surgery. anyway, i know what you are going through and i just had to put my mom in a nursing home because i am all that she has to care for her and one person can not do it alone, especially if they can not lift someone if they have physical limitations. i know the sick feeling that you feel, but do know that you putting your dad where he can be cared for and watched 24 hours a day is doing the best thing for him. you have shown your love and care by doing what is in his best interest. do not listen to others that may tell you otherwise: i have cousins and aunts that all have something to say, yet they have not offered to help me care for my mother. be proud of yourself for doing what is best for him. also, i find when i think back to good memories of my childhood with my mom, that i cry, but i also smile. try to remember all of the good times with your dad it will help. my heart goes out to you and i am sorry that this has happened to your dad. my mother has recently been diagnosed with lb following at least two years of memory loss, hallucinations and delusions etc. sadly, my brother, who lives 150 miles away, had kept telling her there was nothing wrong and she should ignore my attempts to take her to appointments. she has been absolutely vile to me with unbelievably vitriolic comments, and some attempts at physical harm towards me. she has delusions about me breaking into the house every night, stealing her keys and locking her in, stealing her money etc. it reached the point that i haven’t been able to visit for the last three weeks (i was her carer up until this point). i have now found she has blocked me from speaking to any of the professionals involved (with my brothers knowledge and support) and although i wanted a ‘way back in,’ two of the professionals have told me to back off completely as the delusions will not improve, as they are now firmly implanted. i’ve not seen this sort of advice anywhere on this thread and wondered if it was common? very sorry, jilly, what a horrible situation made worse by what appears to be ignorance on the part of other family members. sadly, that’s not uncommon, for various reasons. > as for the delusions “now firmly implanted,” that sounds like nonsense to me. in my personal experience, as a carer, not a medical professional, no delusion is forever, or certainly none i remember in all my dealings. however, if the delusion fed and fuelled, i would expect its flames to last much longer. > hopefully, in time, things will progress and this will no longer be an issue. and if you were her carer before, it is likely you will be again. it takes a rare, and extremely special person to care for a loved one with lbd for a long time, and it seems quite plausible that a distant family member will not “step up” to this challenge, or not for long. especially, one who is a denier. > here’s to a change for the better. strength to you! timothy hudson thank you for a positive statement. x a person with dementia, especially lbd, can exhibit paranoia, hallucinations, delusions and confabulation. a delusion could be of you breaking into their house. with early dementia they can hide the illness and repeat to others, espcially relatives, doctors that your behavior is bad towards them (i.e. stealing their money) when you know it is a lie. the person they lie to doesn’t understand the degree of dementia and thinks your behavior is wrong, then seeking to protect the person with dementia from you. please have your brother spend 2 to 3 days with your mom to see the problem and believe you. when the dementia is advanced they can’t hide it for long. give the doctor a piece of paper listing your mom’s dementia ahead of the exam. try to project to others that you understand the illness. when accused by mom reassure her it didn’t happen and you will protect her and she’s safe with you, you are her daughter and best friend. good luck my husband’s father recently died of complications related to lbd. as i think back on his life, i remember symptoms from years ago that we didn’t understand. i realize now that they were early signs of lbd. my husband has some health challenges and i can’t help but wonder if they’re also early indicators of lbd; specifically, insomnia, occasional tremors, fatigue, lightheadedness, lack of focus, and ed. i’m wondering if it’s helpful to say anything/consult a neurologist at this point or if i should keep watching and let him enjoy life. he’s 53 and our youngest is 9. if you were in my shoes, what else would you do now to prepare? long term care insurance? financial preparation? it’s possible that i’m worried over nothing but i see many similarities between my husband’s health and his dad’s. hi julie: at this point, i wouldn’t worry about lbd from the things you mention   they could be from so very many things, especially insufficient b12, vascular or pulmonary issues, etc. i would still raise these issues with his gp, but without attributing it to lewy body dementia. one of the risks is that when one has dealt with a very difficult, traumatic condition like this, it is natural to begin attributing individual symptoms to be a sign of the development of the condition in others. but letting a well informed professional investigate what it may be is worthwhile, without “leading” them in a particular direction, unless you feel the issues are not being dealt with appropriately. > i hope it never turns into dementia with lewy bodies   for everyone’s sake. > strength and clarity to you! timothy hudson hi julie, i read your email and i know how scary this must be for you. my father has lbd  but it’s my father, not any link to my husband. however my husband’s father and his 2 uncles (his fathers brothers) suffered from parkinson’s disease. just the fact that you’ve observed a loved one with lbd, i’m sure you are much more aware of any “different” behaviors from your husband. my husband is 61 and i’ve asked him to tell his doctor about his memory issues, confusion, apathy, and changes in his speech fluidity. he refuses to address any of it and says i’m making something out of nothing. since you and i are aware of how terrible dementia can be having observed someone with it, i think we’re more aware of the signs to look for. it sounds like your husband is listening to your concerns. i hope these issues turn out to be something other than dementia that can be corrected quickly . take care! long term care insurance   i wish that my mom would have bought it because without it, now all of her money and life savings will be gone for her care. long term insurance is good to get esp. since people are living longer. i have had it since age 30 because it is cheaper when you are younger & healthier. it is best to get long term insurance before any diagnosis is made by a dr. that a person has an illness that can shorten their life. if a person has an illness (i.e. cancer) the insurance co. can refuse to insure them. the long term insurance co. can also charge a higher premium on the insurance if the person has a serious illness. i hope it works well for you, irene. i am not familiar enough with long term care insurance, although i am very skeptical about how it would pay out for a condition such as this. a consumer must be extremely vigilant in considering the terms of the contract, since i’ve heard of cases that rendered the insurance completely useless due to some odd combination of elements. i hope that those cases are the exception, rather than the rule. but careful attention is always needed, and perhaps moreso when dealing with insurers, since it’s not in their best interest to pay out everything a person pays in. i hope it works well if you experience any health issues yourself. strength to you! timothy hudson thank you for this information about lbd. my husband died last week from the results of lbd. i was his sole caregiver, with help of hospice three days a week for bathing etc for the past eight months. i had read everything i could find on lbd and seemed to understand the stages. he had hallucinations for a couple of years but usually the were just small “munchkins” as he called them. then last month he started having delusions with false accusations of me stealing everything we had and leaving him. he was so frightened, and i did not know how to handle it. ended up in er and then geriatric psych. they medicated him and he really did not know anything after that. i was then told how hard it is to get a nursing home to accept a lbd patient. and it was, i was ready to bring him home when he got accepted. the nursing home and hospice recommended we give him morphine. he went seven days without water or food. i am so upset because i did not know of “psychosis” in the final stages. i am so burdened with guilt for taking him to er and thus to a behavior unit. this might have made the end easy on him but i just didn’t know it would be the end. very sorry for the loss of your husband, rachel. but you should not blame yourself. i know it’s almost impossible not to, but you made the right choices in my view   we cannot handle everything lewy throws at us. to me, you did everything right, and made choices based on compassion and love, and with the hope that things could be straightened out. but even with all the right choices, the outcome is not always what we want or hope for. may your horizons begin to lighten in time, once the psychic trauma of lewy starts to leave you, and now that your husband is at peace. > strength to you! timothy hudson my husband fell on june 29 while he was trying to go from his walker to his recliner. he landed on his knees first then his head hit the carpet. he said he was fine and the cna was here to bathe him. so she got him in the shower and he had a tia. we rushed him to the er. he’s been on 300 mg of plavix for his atrial fibrillation. but he’s now been changed to 325 mg aspirin because of two falls in the past week. they told us there was no damage. we took him home and put him to bed. the next morning he was unable to stand on his own and his speech was awful we could hardly understand him at all. some how he got out of bed in the middle of the night and went down the stairs to the garage. we finally found him under his truck. he said he was hiding from the mean people who wanted to hurt him. yesterday had been two weeks since the fall and he is now totally incoherent, refusing to take his meds or eat. i can only get him to take a sip of water. i believe his mouth and throat are dry from his oxygen, and sleeping with his mouth open. monday night i heard him coughing and i could hear the gurgling of water in his throat. his nurse ordered pills to put under his tongue to help with the moisture but last night it was much worse. i heard him coughing and i could hear the gurgling water in his throat again. his nurse ordered a pill to put under his tongue to help with moisture again. but last night he coughed all night with that sound of water bubbling. today he slept tell 4:30pm and was totally out of his head when he did finally wake up. i now have him in the hospital bed and ordered adt security system so i’ll know if he ever gets out of bed again. bobby has gone from stage 3 to stage 5 in three months. no one told me he could advance this fast. everything that could go wrong has. hi margo: what a horrible time you’ve been having with bobby. i am so sorry for how things have gone. such a fast progression. if it was me, i would investigate whether he is “aspirating” which is having material go “down the wrong way,” such as having saliva, fluid, or food go into his lungs via the trachea, instead of into the stomach by the esophagus. this is very common with lewy body dementia, and can lead to pneumonia. sometimes the symptoms of pneumonia are “silent”   meaning they do not show up like they would for a healthy person. in my own case, my loved one had pneumonia several times in the latter stages with no symptoms, other than extra fatigue (which was common at other times, so impossible to know), or disorientation and confusion, delusions, etc. fortunately, we were able to catch it almost every time before it developed. it might not be this at all, but perhaps a medical professional could assess him, just in case. i’m no doctor, so i can only relate what we did, and what i’d do if it was me. > your security system installation sounds like a great idea. hopefully that’ll allow you to get a better sleep. > and i hope he begins to eat and drink more heartily, soon, too. it is possible. some of the swings with lbd are just so wild, but sometimes our lo’s rally incredibly, too. > may things turn out the best they possibly can, and may you find acceptance for whatever comes. you’re a great advocate for bobby. strength to you! timothy hudson. i’m just wading thru articles online. my dad is 87 and was diagnosed with parkinson’s disease in december of 1999. for the past several months, i’ve been seeing more and more confusion on his part, struggling to find words, and odd behaviors very unlike him. three weeks ago this past tuesday he was hospitalized due to severe diarrhea. the hospital really messed up his time sensitive carbodopa levodopa dosages and times. he spend exactly a week there and then was transferred to a skilled nursing facility because his body completely locked up. after 48 hours, i noticed a small red, hot area on the back of his wrist. by morning it had spread around to the top of his hand and then very quickly up his arm as we were awaiting blood work. the snf called 911 because it spread so fast. tests at the hospital determined it was cellulitis and got him started on an iv with antibiotics in the er. they sent him back to the snf that evening with a prescription for oral antibiotics. a few days later, he developed cellulitis in his left hand. it was like a crazy game of whack a mole……but as of a few days ago, he started having strange delusions/hallucinations. they don’t make sense. my brother had flown out from texas and felt that he was dreaming such realistic dreams that’s all it was. but the more i read about lbd, the more concerned and almost convinced that what this is. i have a call in to his parkinson’s specialist who is on vacation until tuesday. i’m trying to keep calm and breathe but this is so hard. i’m glad to have found this community to talk to! hi sue   what a horrible series of events! two things come to mind: cellulitis in elderly people is very common, and can seem to be spontaneous. this can come (as it did with my dad) from eczema, and scratching, and progresses remarkably quickly. it’s good you got it. the fact it was on his hands makes me wonder about scratching. it was there for my dad as well (perhaps it’s just got more commonly scuffed skin, too…..). > secondly, i would not come to the conclusion he has lbd quite yet. the delusions and hallucinations can also be purely from delirium, which is super common in frail elderly, and doubly so with trauma or underlying issues, and by far the most with infections. i’d say that every time my lo had an infection (which often did not “present” traditionally), she got very odd, with much more cognitive/behavioural issues, hallucinations, etc. i would hope that once the infections clear, he will rally again. that said, infections need to be monitored with great vigilance, especially since they can begin with few or no outward symptoms. in our case, pneumonia was “silent” until disturbingly established. i came to be able to tell if something was up, but it is hard because the condition also fluctuated. having an understanding practitioner who will check his lungs, and urine, when there’s a suspicion of anything makes a big difference. uti’s and respiratory infections are what i saw as most common, but cellulitis is also common with elderly, and all need to be avoided. > you’re doing a good thing for him   i hope things turn around! strength to you timothy hudson my husband was diagnosed may 14, 2018. however, we have been very concerned for quite some time now, at least seven years. i really became concerned with rem disorder. he was acting out violent fights with others. because of this i stopped sleeping with him. he also has rapid leg movement, parkinsonism symptoms, and serious cognitive issues. currently, we are revising our wills, living wills, and health care directives. thank you for the listings of possible phases. i always thought i was doing something wrong making him hate me   the outbursts of anger and then forgetting he said anything of the sort. being called a liar by your own husband is tough. i find myself exhausted more and more, and not doing the things i enjoy. i’m 58 my husband is 65, it is so painful for me to see all our friend and family enjoying life going on vacation, going out to diner,church, visiting their families. we haven’t done anything as a couple with enjoyment for 5 6 years. everything sits. he can’t make a decision, sleeps more and more and blames me for letting him sleep to long. i am growing more and more depressed. i am growing guilty, depressed, and more hopeless. any words of help at this point would be greatly appreciated. patricia. very sorry, patricia. what a hard road. i think you need help. for yourself, and for your husband. it is not weakness, you have showed incredible strength and fortitude, resilience and resolve. it’s incredible. but you need to recharge, get a break, a chance to reconnect with others. this could be just a bit of respite, some time away, or a longer break for your own health. it is not selfish: it is, perhaps, even more for you to be able to continue to help and care for your husband. don’t ever feel guilty about taking care of yourself. > in addition, i think you would benefit infinitely from joining one or more online support groups for lbd. the two biggest, which i personally co administer are linked below. you will find you are not at all alone, and may learn incredible new techniques, coping methods, and a community of the wishful, and wonderful. > i hope you find renewed hope. you deserve it. strength to you! timothy hudson https://www.facebook.com/groups/313102568744792/ https://www.facebook.com/groups/lyndseywilliams/ thank you so very much for this “list” of possible symptoms. my 74 year old (very strong and determined) mother suddenly went from going to one of my daughters dance competitions to the very next day in hospital, then nursing home. however, reading the symptoms, she has been suffering from this hideous disease for at least three years. from accusing my very devoted father of infidelity, to arguing with one of my daughters, to the point that my daughter thought she didn’t like her. we are still getting used to her being in the wonderful care facility, which she doesn’t like being in. my father has moved in with us, so we can look after him (emotionally, mostly) and we will sell their house. this has all happened in the last four months, i really dislike 2018! however, we now have a name and reason for her behaviour, her symptoms are pretty much all over the phases, however, you have highlighted some that we may need to keep in mind, at some stage (or not). from the bottom of my heart as an only child (my brother passed away 22 years ago), i want to thank you and send my love to you and all that are going though this journey xx meaghan you’re having a very difficult time, especially now, meaghan, and i’m sorry for the whole scenario you have to be part of. but you’re making an incomparable difference, to both of your parents. i hope you’re proud of what you are achieving, even if it doesn’t seem like its enough, it is still making a miracle. strength to you, and to your family! timothy hudson stay strong! you are not alone. my dad is 78 and was diagnosed a year ago and in a year had to be placed in long term care. he was living in his own home! we had to sell it and it’s hard to deal with at first: however, the more you understand the lewy body dementia, the easier it becomes. and the more you realize there is help out there for your loved ones, the better it is! try to use humour to get through the tougher times! and when she starts to not make sense… go with the flow! i still have “conversations “ with my dad even though nothing makes sense, it’s ok. keep moving forward and cherish any happy moment you can get! we are all staying strong together! keep smiling! and thank you timothy for the great info! those are great suggestions, natalie! definitely, the more you understand, access help, and use humour, the better everything will be. like you, i had “conversations” with my loved one, despite it not seeming to make sense. but on many occasions, once i’d learned how to “translate” what she was saying, with word mixups, repetition, etc., i found i could understand quite a bit, and also learned she was not as profoundy impacted in terms of her cognition, but that her ability to communicate was frequently severely affected, and i could sometimes see through that. here’s hoping you’ll be able to too! > strength to you. timothy hudson. hi timothy, i wrote to you in april, 2018 after reading your phases article. my father is chester, the 92 year old with lbd. my question is this: can hyperthyroidism and lbd be related? chester now has hyperthyroidism and is under hospice care due to extreme weight loss. he’s refusing to have any test done or take any medication. his doctor is giving him 3 to 4 months to live. i was wondering if you have any knowledge of a link between the two diseases. thanks, mary hi mary   sorry i can’t help on this question, really, since i’m not a physician. i’m not familiar with a connection between any thyroid issues and lewy body dementia. i suppose the only “connection” is really correlation, rather than causation, with age: where the older one gets, the more likely one is to have dementia, as well as a myriad of other conditions like heart disease, thyroid issues, cancer, pulmonary diseases, etc. you’re doing a great thing for your father chester, and he is ultra blessed to have you as his daughter. strength to you! timothy hudson very helpful to find these postings and realize there’s others out there with exactly the same descriptions of things we’re going through in this puzzling disease. my husband has had the diagnosis for 5 years, after going through a geriatric physician, a neurologist, a second opinion at a movement specialist/neurology center, and now a neurologist specializing in parkinson’s and lbd. i feel like even she is learning more things about this disease through us. she has never described the off/on exacerbations or given us some affirmation in descriptions like you have here. your work on this topic is invaluable  thank you very much. i believe my husband is in stage four. his movements are more imbalanced and he needs help getting up; he hunches a lot now to eat or stand. i give him sitting showers and do most of the shaving. he sleeps much of the day and has to rest after a meal. when we go places, he wants to sit in the car. if we use a wheelchair, he is afraid to “drop into” it, and can hardly get out of it. he uses depends all the time. sometimes everything comes out before he can get to the toilet. my greatest concern now is the sleeping. he can lay down and snore in 30 seconds, sleeping immediately after breakfast, for 2 3 hours, after sleeping all night. he doesn’t really watch the tv much as his eyes close and mouth falls open after 10 minutes. so i expect the worst. but then in a few days, he might rally a bit and act more alive, and even take a slow walk with me around the block. conversation is half a thought or a barely perceptible “yes”, agreeing with anything i say. it’s a very lonely time. another writer expressed my exact feelings, saying, how difficult it is to see that other couples are going and doing, enjoying this life stage together, while we deal with challenging twists and turns from impeded brain function. to try to describe my caregiver emotions to my husband, i say, “try to remember how you reacted sometimes when your boat wiring had issues and wouldn’t work right after spending days trying to figure it out. sometimes you had to throw your hands up in desperation and frustration, and need to get away from it. well, that’s how it feels partnering with unpredictable off/on brain wiring. it’s not you, darling, it’s the wires…” then i can get mad at the wires, not him, and he understands. what an excellent attitude you have, and an equally great analogy, that’s how it feels being a partner of someone with intermittent problems with the wiring in their brain. “it’s not you, darling, it’s the wires.” > thank you for all your insights. may things go the very best possible for you and your husband! > strength to you, timothy hudson my 67 year old husband has pd dementia (pd 5+ years, and cognitive difficulties at least 4 years), and i was pleased to see that his neurologist has been doing all the things (drug wise) that seem appropriate. i’ve found hospitalizations (for broken hip, uti, for bp >200, for bp<70) each have had a negative impact. i feel very fortunate that so far hallucinations and rem have been mild, and he is still his affectionate self. however, i had the mistaken idea that, as he lost cognitive ability, he would simply become more childlike, and lose memories. instead, i'm finding he can no longer follow directions (which makes doing pt very difficult) nor can he do things that seem obvious   i now need to physically cue him re: how to go from sitting on the edge of bed to lying down. we live in independent living of a great continuing care community. he can walk with a walker pretty well to the dining room. and seems to still be able to articulate what he wanted for dinner. so it was really unsettling to see him trying to eat his potato chips with a fork the other night. and this morning, to have no recollection of how to use the electric toothbrush he's used for years. i haven't seen my mom in 6 years (we live far apart), and this november is her 90th birthday. i had hoped to go see her, but i'm now too afraid of what the stress of having me gone will do to him (fortunately, a very understanding mom ) nice to find this site to vent a bit and learn from others. wow, alison! he’s so blessed to have you. it sounds like you have great insights, and that the mirroring will help the most at this point, for many things. that may fluctuate, as do so many things with lbd, but you seem to be absolutely on the right track. > i hope there’s some way you could visit your mom for her birthday, but any change to routine can be very difficult for our lo’s, so i totally “get” your hesitation. you are very compassionate. would video conferencing with your mom be almost second best? it can be quite amazing, if you have a good internet connection. > you’re doing a powerful thing. strength to you! timothy hudson thank you so much for this information. my dad has been taking meds for dementia for a while now, probably 2+ years. he lived on his own, was still driving, and riding his bike 1 2 times a day (3 miles) until a about 6 weeks ago when he lost his license. we had to move him closer to me and he struggled with the move, but was still riding his bike each day. he has been dealing with low blood pressure issues for years, often feeling dizzy upon standing. was put in hospital after a bout where his bp was 56/43. from there things really started declining, lots of hallucinations and confusion. upon release we put him in an assisted living facility where he did great for 3 days. then he began to stop sleeping and was up all night hallucinating. was put back in hospital after a bout of moving all the furniture in his room and barricading himself in his room with a wall unit. he ended up with atrial fibrillation, something he never had. once again, he declined drastically in hospital, going from 90% reality/10% non reality to 5% reality/95% delusional. he was released into memory care at same facility and day one was horrific. praying he can stay there for a little while. your phases/symptoms was helpful to me understanding that some things he was experiencing for some time most likely are due to the disease, like loss of smell, excessive sweating, and falling bp. if only the doctors knew as much as you seem to. to this day we have no diagnosis from a doctor even after 16 days in hospital in last 3 weeks. we are amazed to how fast he has declined in just a few weeks. thinking he skipped right over phase 4. so sorry for the precipitous decline, penny. what a punishing ride. sounds like he was so healthy so recently. but these conditions are unrelenting in so many cases. the diagnosis aspect is a tough one: mixed dementia, which more than half of people with any dementia has (two or more kinds of dementia) makes both diagnosis and effective treatment excessively difficult. you can imagine that with a variable condition like lbd that has significant fluctuations, and a little bit of alzheimer’s or vascular dementia, figuring out which one is causing which symptom, and how to treat it without causing other problems is monumental. no matter what, i hope he settles, and that you can accept and adapt to the new, difficult reality. > strength to you! timothy hudson been fighting this for over three years. my daughter found this article and mailed it to me saying “my god dad it’s like looking into every day of the past three years”. this is sad but wonderful at the same time. god bless! sorry you’re having such a difficult time, chuck. this is indeed a sad condition, but i am so glad you found the article, and feel it is worthwhile. blessings to you, and to your daughter. > strength to you and your family! timothy hudson. i’ve read al the comments with tears in my eyes. my husband of 40 years died on september 10th after a long battle with the’ lewy monster’. i wanted to thank you for all the information on this website, which i looked at many times whilst my husband was suffering all the indignities this terrible illness threw at him. i cared for him for 4 years, the last 2 being a living hell for both of us. he had hallucinations, drooling, anxiety and agitation, delusions and very often did not know who i was. he had terrible episodes of constipation and was unable to lower himself on to the toilet. he forgot how to get in to the car, so i had to get my shopping delivered. i hadn’t left him alone for over 2 years, so i was unable to go out without him. it was during the last couple of months he suddenly starting having falls and one particularly bad one was the beginning of the end. he slept endlessly, his mobility decreased rapidly and he lost interest in eating, the only food he took was some puddings or a little scrambled egg , which i had to spoon feed to him. i had managed all this time alone, i won’t say it was easy, some days i felt like running away. but i had promised him i would always look after him, so i did . but now things were different, the doctors suggested respite, i reluctantly agreed and he went in to a dementia nursing home. i hoped they could get him mobilised again and that he would see a dietician. the following day they told me he was at the end of his life. how had i not seen this? he had lost so much weight in the week prior to his admission, yet i still was looking for answers. constantly researching lewy bodys symptoms, yet i didn’t see the end was coming. the last thing he ate was ice cream, he died 6 days later. he was completely peaceful during that time and did not require any medication. i believe he wanted to go, he had suffered enough. i had ‘lost’ him 2 years ago, but still the pain of the grief is no less. i miss him every minute.. my heart goes out to every caregiver to a ‘lewy’ loved one. may you have the strength to ride the lewy rollercoaster to the end. so very sorry for the loss of your husband, patricia. what a hard, fast, and punishing ride you both had. i’m glad he is now at peace, and that you were able to stay together so very long, and through such difficult times. that’s a great testament both to your amazing care and energy, and some small measure of luck as well. i’m sure he enjoyed his last meal of ice cream, and   as you say   that he had suffered enough, and wanted to “go.” > i hope your horizons brighten, and that you’ll be flooded with memories of him as he was before the long dark of lewy. you did a good thing for him, and made miracles happen. peace to you now, and to all who loved your husband. strength to you, timothy hudson. pingback:what being a caregiver has taught me about art (part ii)   patricia steele raible i am so moved, emotional and grateful to find this website. my mother, laura, died 3 weeks ago on november 15, 2018 at the age of 64. she was diagnosed with lbd in the spring of this year, after i pressured her to go get checked when my father and i started noticing some mental confusion around this time last year (nov 2017). while i don’t necessarily regret pushing her to get assessed, as knowing what we were dealing with did provide some benefits, i do feel guilt as it had a lot of unpleasant consequences for her as well: she had to deal with having yet another frightening diagnosis (she dealt with three kinds of cancer, numerous cardiac problems, a concussion from a fall, surgical complications and a host of other maladies; she just could never catch a break but stayed impressively resilient despite all this), she had to accept that it was time to stop driving (she sort of knew it already because she’d caused an accident   no injuries fortunately   but this really drove it home), she had a whole new set of rules to follow to manage her illness, which were good in some ways but restrictive and frustrating in others. she went and got tested for my sake, because i begged, fearing she had alzheimer’s or something else that i might too inherit, so i admit it was half because i wanted her to get help and half self centered concern for my own health. when i started doing research after her diagnosis earlier this year, it was striking how consistent the 8 year life expectancy seemed to be; i took that to the bank. it was hard to consider losing her at the fairly young age of 72 as she would have been if she’d lived that long, but it was far enough away to feel bearable; i never expected when she was diagnosed that she would die within the year at age 64. and it’s not clear whether it was her cardiac problems that led to her heart failing, or whether it was lbd; i’m still not quite sure i understand what the “cause” of death is for lbd sufferers. i understand and witnessed the overall physical weakening, but while her condition was very noticeably impaired and seemed to get worse fast, it never seemed to anyone like she was at death’s door. (can anyone help me to better understand the cause of death mechanism for lbd sufferers? does it vary? i assume there’s a lot of gray area or uncertainty.) but anyway, i’m digressing a bit, and appreciate this forum to discuss something that seemingly no one i know has any experience with. the point is that since i had so little time to research lbd before she died, and have struggled these past 3 weeks with the many unanswered questions about how and why she died so young and so rapidly and what percentage of the blame can be assigned to lbd vs something else else, i have been hungry for more information to be able to put the events of her last year on earth into context. this is a long winded preamble to saying that this website, which so clearly described the phases in a way that not even her excellent doctors were ever able to that i can recall, is such a relief and strange comfort to me. from reading this, my layman’s anecdotal opinion is that she was in phase 3 with a few holdovers from phase 2 still applicable; it was both a relief and frustration to get to your section on phase 4 and not recognize almost any of those symptoms (relief = “thank goodness she didn’t have that, that sounds so hard” and frustration = “why do other lbd patients get to live so long and she didn’t?”) i see that there are blessings and silver linings even beyond what i already knew of, namely that she was spared the agony of the later phases and most of the more severe symptoms. her confusion was mild and sporadic for the first part of the year, getting a little worse toward the middle, and in the last few months she was only occasionally getting agitated and slightly paranoid. her speech was starting to get mildly disorganized, and her voice became extremely hoarse, but it rarely took her more than two tries to get her point across. we literally had an intake consultation with a home health care aide scheduled for the day she died; while she was leaning on my dad for a lot of help getting around, this does mean she technically died still living independently. she had hallucinations and always thought there were more people present than actually were, but they never seemed to bother or frighten her, to my amazement; she was quite bemused. i never knew until i read this that it was called “capgrass syndrome”   this describes what she had going on exactly, she kept thinking there were multiples of everything and everyone. the hardest part was how incredibly physically frail she was   walking was slow, frustrating and often dangerous, and she struggled to manipulate her walker/wheelchair; she had so little energy; she could barely eat and had little appetite, so she looked tiny and cold and feeble though she had always been tall, full figured, and vibrant until a year or two before she died. and again, losing the ability to drive herself took a great toll on her state of mind, as it would have for me in her position. she loved to drive and found a lot of joy in even the most mundane errands; i take after her in this regard. anyway, all this to say is that while lbd is obviously a massive bummer overall, i’m trying to take some comfort in how the “grass is greener” for her unusually short lifespan after diagnosis; as much as i wish i could have had more time with her and continue to struggle with the injustice of her dying at only 64, this website reinforces how painful her last chapters could have been had she lived longer, and i will try to take some comfort from that. when i sat in that neurologist’s office the day of her diagnosis and heard the words “lewy body dementia,” and recognized them immediately from having read extensively about the death of my childhood hero robin williams who ended his own life rather than deal with this disease, i tried and failed to keep it together, imagining what pain might be in store. i am very glad i had no inkling that her time would come so quickly, and am fortunate that i got a lot of time to be with her and enjoy her company in the last year   by chance, i ended up staying with my parents for a little over six months as i prepared to move out of state, and i now see what an incredible gift that was to have gotten so much time with mom in her last year while she was still relatively healthy. and to those who have the other end of this trade off   more time with their loved ones and more chances to help them manage this illness (and may it bring many blessings and comforts to you), but greater challenges as symptoms deteriorate and the tremendous stress that this no doubt will bring, which i only got to experience a small taste of in the scheme of things   i send my love, support, empathy, solidarity, and encouragement. above all, i want to thank sue lewis, june christensen and timothy hudson for putting together this extraordinary resource, and for creating a community of lbd caregivers here in this comments section that has been so educational, insightful and compelling to me as i work through my grief for my mother. all my best to all the lbd families out there struggling; you’ve got a friend in washington dc who’s inspired by and proud of you for continuing to fight as best you can, hard as i know it must be. thanks to anyone who read this much too long comment. 🙂 very sorry for the loss of your mom, laura, at such a young age, emily. your insights are deep and profound, and i can’t really add anything to them. my own employment was terminated when things were getting to their lowest point with my lo, and i was able, because of this unwelcome change, to spend 2.5 years helping in a much more impactful and direct way than i would’ve had i been working at the same time. some might chalk that up to coincidence. i am no fatalist, but i do think there was some good luck, or guidance, that timed things that way. it might be the same devine intervention that had you end up staying with your parents for a little over six months as you prepared to move out of state. it was indeed an incredible gift to have gotten so much time with your mom in her last year while she was still relatively healthy. > strength and healing to you. timothy hudson hello from ireland: my name is debbie, i am 39 years old and a teacher, i am caring for my mum who has lbd. your forum has been a wealth of information so thank you. my mum has suffered with visual hallucinations from about 2016. she sees people in her home all the time. she thinks they are trying to steal her money and phone and bag, therefore she hides her bag all day in different places then gets so upset when she cant find it. it is causing her so much distress. she knows the ‘people/hallucinations’ are not real but she is still threatened by them and she thinks they re trying to take over her house. can anyone advise me on best how to deal with this….and also if anyone else with lbd behaves the same way over money and personal belongings. there are so many other things going on with my poor mum but this is causing her so much upset every hour of every day… thank you debbie x hi debbie   sorry for the enormous challenges you’re having. i’m glad you found the website, and that it was helpful to you. > as for her paranoia about money and belongings, theft, etc., sadly, those are very, very common. reassurance and redirection to other things is often the only thing that can help. you may also find it helpful to always stick to the “mantra” of promising to help. it’ll likely be counterproductive to dispute her claims, since they’re going to be absolute reality to her, and you may just lose credibility yourself by attempting to deny what is real to her. if it was me, i’d affirm her concerns, but with a twist   that her bag had something spilt on it, and it was being cleaned, and/or that the money she thought was stolen, you’d deposited recently in her bank. something along those lines, to not contradict, but to provide an improvised “fiblet” (therapeutic lie) to calm things as much as possible. > it is a difficult road   i suggest you would benefit from joining an online community. i co administer the two biggest groups in the world, currently, and they are brimful with the most compassionate, caring, and experienced carers anywhere. the links are below. > strength to you, debbie! timothy hudson (here’s the links to the groups   lewy body dementia carers, and lewy body dementia support group. if you’re interested, i also provide a curated news service, which you can get on my website here, or on facebook.com/lewy.ca thank you for replying …it means alot. one day at a time and enjoy the good times we have…but i think the more i understand the condition it is helping me deal with it a bit better. her neurologist has cut her right down on the sinemet tablets that she was taking for parkinson’s, as like many others that was her first diagnosis, so i’m hoping that maybe the hallucinations might not be as bad when they start to leave her system…. but there is also the effect of the tablets coming out of her system affecting her!! taking her for some acupuncture now as it calms her. i will continue reading you forum and will be in contact. lots of love from ireland, thank you! debbie x my dad was diagnosed with lbd, quite a few years back, not exactly sure as to what year. however, it was a slow progression at first, and he was able to stay with others (at his desire), and they were able to support him in his decision. it was tough at times, of course, and then the “exit seeking” wanting to leave all the time started. the 3am phone calls that dad had got out again, started more frequently, and the anger and frustration that dad presented got more frequent as well. always wanting me to take him somewhere, no matter where, just don’t say we are going home, that was the “trigger” to make him upset. within the last year, it has been a very fast progression, especially in the last 6 months. things have taken a very drastic dip, and going from an assisted living home, where he would walk on his own, to being sent for a geriatric psych, and med check, to where he no longer walks, and his ability to speak has diminished to almost nothing. but there are those times, that he will smile, and be able to talk, but for a minute, but it is a great minute to have. my one question to him always is “are behaving yourself?” and if i get a shake of the head no…. i know that he is still aware. that i am there. and typically a smile will come across his face when he answers me. this disease is not forgiving, it has no prejudice, and is just downright not fair, to the person it affects, nor to the loved ones involved as well. thank you for giving us a place to share our voices, and be able to understand that we (the loved ones) are not in it alone. good luck to all and stay strong!! hi andy   sorry for how things are going for your dad, and those who care for him. you are so right that lbd has no prejudice   it is equally unfair to all, and so unforgiving. you are certainly not in this alone, and all you do for your dad make a monumental difference. i bet he’s wondering, too, if you are “behaving yourself.” you bring a smile to him inwardly, even if he can’t express it outwardly. > strength to you! timothy hudson wow! i just googled dementia and leaning to the left and found this website! i am thankful and heartbroken at the same time. i know my sweet mother has dementia and have dealt with it for several years. she is in the “lock down/ alzheimer’s“ wing of the nursing home after she fell and hit her head in july. since then, she has been more childlike. she has difficulty with simple conversations. i can tell that she is trying to tell me something…but the words that she uses are not real words. it is so sad. but bless her sweet heart, she smiles while she tells it. she just started leaning these past couple of weeks. i had never heard of lbd. from what i read, we are between the 4th and 5th “phases.” on most days, she knows me. she is as sweet as candy! i brush her teeth because i have a fear that she will lose them. they eat a lot of sweets there. on days that i do not take the electric toothbrush, i help her to brush manually. we brush without toothpaste first, to remove the plaque and then with toothpaste. she can brush them once i get her started. other than that, she can’t remember how to simple tasks like washing her face or brushing her hair. my mind is swirling with the new info, but i am so thankful to have better insight into my precious moms condition and her world. thank you! glad you found the website, and that you’ve found it helpful, tam. sorry things are difficult with your mother. but you make such an incomparable difference to her life. it’s so great that you are cherishing every moment of connection and lucidity. that’s so very wise. doubly wise is your tooth brushing methods, and the diligence to help her keep her teeth. i think this is highly underrated, and keeping ones teeth is very important to many things, not the least of which is keeping infection at bay, and gastro intestinal distress, which very frequently comes from problems in the mouth, which can often be eliminated by good oral and dental care. > you’re doing a very good thing, making your mother’s life the best it possibly can be. > strength to you! timothy hudson hello timothy and all who have written about their lo’s, much love and respect. my father is in long term care now for three years with lewy body dementia. my mom was his care giver for many years prior to his diagnosis. my father is an alcoholic (no drinking since in the home but not for lack of want or trying and he still to this day craves it), for many years we blamed his symptoms on his drinking not knowing that there was more to it. there is a possibility that the alcohol may have started a path of korsakoff syndrome that lead to lbd as per discussion with one of the many doctors he has seen over the years. my father started drinking more heavily after losing most of his eyesight 17 yrs ago due to an aortic dissection that he survived but had him lose the bp to optic nerve. he is legally blind but still has a little sight now but watches as it deteriorates daily. my mom has been by his side for 65 yrs and continues to visit him in the home most every day with the exception of two which she need to take for herself (84yrs old and amazes me daily as to strength and capacity for love and understanding). myself, my sister and my daughters also visit throughout the week as well. i have moved home from ab to nl 2.5 yrs ago to help them both. best thing i ever did, so glad to be here! my advice to all caregivers is to take care of themselves first. be kind and gentle to yourself on this journey. love, christina what a lucky man, under the circumstances, your dad is, christina, to have such love and care from you, your mom and your family. i’m glad the move back from alberta to newfoundland was so positive. many people resent such a necessity, but you are taking, and making, the very best of it. > i hope that you are able, yourself, to maintain your own recommendations to other carers   to take care of yourself first, and to be kind and gentle to yourself on the journey. > strength to you, and your whole family. timothy hudson hi what is your findings or thoughts about the tia with a lbd? hi linda. i don’t have any information linking transient ischemic attacks (tias) and the development of lewy body dementia. there would be a link between them and vascular dementia, though. i think it’s also worth keeping in mind that the majority of people with one type of dementia, also have at least one more at the same time, which is why it makes accurate diagnosis so difficult. i mention this because many people likely have both vascular and lewy body dementias, so in those people, there might be a link. i’m not a doctor or neurologist, though, so perhaps there’s a link i’m unfamiliar with. strength to you! timothy hudson thank you very much for posting this site. it has been very helpful and is the most comprehensive list i have yet found. i live in the us and had been worrying about early onset alzheimer’s, but you’ve given me the information needed to know what to look for and document and then relay to my health care professional. oddly enough, finding this information has made the still horrifying specter of this disease a little less scary. thanks again. hi jag: i’m glad you found the information made the spectre of dementia a little less scary for you. that is a key goal of providing the info, to demystify things. it’s not like it makes things any better, but it does remove at least some of the unknowns, many of which are even more unsettling. may your journey be the best it possibly can be! strength to you, timothy hudson thank you for all the information you are giving us. i live in the usa. four years ago, my husband was diagnosed first with parkinson’s, then lbd. when i read through the symptom checklist, almost everything pertains to him. in hindsight, he must have had this disease already, years ago. it started with kicking me in bed, jumping out of bed to save a drowning child, hiding things so “the kids” would not break or ruin them. he played soccer until about age 73, had to give up because he said “was stumbling over his own feet.” after taking care of him at home and, at the end, haven sitters for seven nights a week, i still could not manage taking care of him during the day. he is now in a behavioral health hospital where they try to adjust his medicine, so he can go back to the long term care facility, to which i had to bring him. i feel so helpless, i cannot do anything for him, and worry day and night whether he is treated well. i hate this disease. i wish we both could just drop dead together. very sorry for how things have gone, charlotte. but i do not at all believe you are powerless. it seems to me you are extremely powerful, and have done utterly incredible things for your husband, and continue to do so. i understand the constant worry, and feelings of helplessness, but i hope you can also set aside those for a moment, to feel proud, and accomplishment for all you have done for these four years. everything possible has been put in place to make his journey the best it possibly can. you should indeed feel proud, even though the outcome is far from what we’d ever wish for. > may things somehow improve and stabilize, and that you can also find a way to accept things at least a little, or a little more. you are doing an incredibly powerful thing for him. truly. > strength to you! timothy hudson hello…i have been reading these posts for years and learning so much from all of you. my husband of 52 years was diagnosed with parkinson’s and lewy body within months of each other at a veterans administration hospital in the us…i know now he had both diseases for years before diagnosis but i could not figure it out. finally a friends husband was diagnosed with parkinson’s disease..for years she and i joked about being beaten up at night by our guys..only to discover it was rem disorder. after her husband was diagnosed i wrote down everything my husband was experiencing…even though i could not connect things and considered them unrelated to each other…his provider looked at my list and said to me…”this looks like parkinson’s disease….it took over a year to diagnose him, and then came the lewy body dementia diagnosis. that was suspected in 2015 but not diagnosed completely until early 2017…i can tell you that i now see he must have had this cruel disease for several years before diagnosis. sadly he is completely wheelchair bound…although he forgets he needs it most times. the falls have been cut a million percent since he went into the wheelchair full time…although with the weakness in his body’s core, he does just slide onto the floor from whereever he is at times. in oct 2016 he had his second heart attack and needed open heart surgery…he has never recovered fully. his mental capacity and the ability to communicate are almost gone now. he has such trouble swallowing everything, sometimes at night i wake up thinking i just heard his last breath. he was so angry in the beginning of our roller coaster ride with parkinson’s and lbd…he is much more mellow now..i think because he is less aware of his situation than he was. today he heard me talking to our son and explaining the program the va has for his dad. they suggested thinking about placement into a facility but when i said no…a few days later, i was offered the ability to have an aid with me to help   38 hours per week. i am accepting that offer. …he turned to me and said “am i really sick?” i hope my darling husband can remain with me until the end…it is difficult but i have learned so much from this forum and every other article i read about lbd. i try to never argue or make him do anything he resists…i try to follow all the advice given by these groups…i want you to know. it has changed my life….i was terrified i would not be able to keep him in our home. but, with the help i get from the va and all the advice i get and listen to…my husband and i are still able to find laughter, we love joking about things together…even if it’s his funny “lean to the left”….you have all inspired me to try to find humor in everything…it makes things much easier…we can still share our life even if it is only for an hour or two a day now. thank you all what incredible, beautiful insights you have, michelle! so completely delighted you’ve learned so much, and have been able to accomplish so much, despite the many hard lessons on the long, bumpy road you’re on. i can’t add anything to your great wisdom and understanding, other than to say thank you, for putting it into context, and for reminding people that it’s possible to get through things the best way possible, despite how many difficulties you encounter along the way. you’re very inspiring! > strength to you, timothy hudson michelle, i write with great admiration for what you are doing and to thank you for your message of humor, joy and laughter as a critical tool for all of us to employ. i first wrote to timothy hudson to thank him for his help in 2017. my wife’s doctors had stopped treating her in march of that year and told me to expect to lose her before the end of the year. we are still here. humor and the joy for life, no matter how constrained has not only helped her, but as she has slipped past a point of being able to communicate except at the most basic level, it has gotten me out of bed each morning to try one more day of caring for her. joy can be found in the simplest of things. when we lose joy, we lose hope. last week i awoke in what i can only call a foul mood. i drank my coffee wondering how long i could sustain this life. then, as i do each morning, i went in and kissed my wife on her forehead to start her day. she had not spoken a single word for many months, but that morning, she opened her eyes and said “i love you.“ my worst day instantly turned into my best. you cannot make this up. they are in there, they know what we are doing. i probably drive my poor silent wife crazy with gossip and world events. weather permitting, we are out with her wheelchair for more than an hour each day, exploring, while she listens as a captive audience to my babble. call me a fool, but it has been a year and a half past the point when i was told i would lose her and we, we together, fight on. wow, thomas. what an incredible thing you continue to do for your wife. absolutely astonishing. and what an unexpected, joyful reward she gave you, with her surprise “i love you” after many months of silence. your tenacity and good nature, your use of humour and going outside daily, talking to her must bring such comfort to your wife, it’s immeasurable. you’re a superstar! may your days be bright, and your memories, and the knowledge of what a difference you are making sustain your energy. strength to you! timothy hudson when you said that the signs can be scattered across the phases, that hit home for me. my husband has had lewy lean almost from the get go. we were walking across the parking lot to go see his doctor (back when he could walk assisted) and suddenly i realized we were walking diagonally to the left, and i had to steer him back towards the door. now, i have to watch him in the wheelchair because he’ll lean to “two o’clock” on the left and i worry about him falling out. has it been observed that cognition comes and goes? he woke me up a month ago, crying, saying he couldn’t think any more. a couple of weeks later, he was better. then, not so good. now he’s better than he was, but he’s not the man he was. the same with the hallucinations. he sees small animals and for some reason, he’ll have a couple of days where he talks to people who aren’t there, or he thinks he’s at the hospital or his mom’s when he’s home. he’s in skilled nursing now, because he can’t get up by himself and it really wouldn’t be safe for him to be alone when i’m at work. they’re trying to help him with pt, but it’s become less effective. is it safe to say that as the lbd advances, there won’t be any reason for pt? thanks for the information and insight. i really appreciate it. sorry for how things are going, janet. it sounds like you’ve done a remarkable job being proactive for your husband, and making things the very best they can be, under the circumstances. as for whether there’d be a point where physio therapy (pt) becomes pointless as his lbd progresses, i’d say no, personally. my experience was that any, and all, activity helped. it may not be able to improve things to make a person mobile, or walk, necessarily, but all flexibility is very important. without pt, he may become almost completely rigid, and his muscles may essentially “freeze” in place, which has caused great discomfort for people i’ve known. in addition, it becomes more difficult to reposition the person. a woman at a dances with parkinson’s class i volunteered with had very profound lbd, and was unable to move herself, but her carer moved her arms, and legs for her, to the music in the class. although she could not communicate in a traditional manner, it was clear that she enjoyed it. pt will also likely help maintain digestive function, which is very important. so, in conclusion, although it may not get a person in “good shape” i believe activity and exercise is very important right to the very end. i walked with my lo using her walker until three days before she died (i held her arm at all times, and prepared to grab her if she was falling). i know this is not typical, and i was much larger and stronger than most, which was indispensable, but i have no doubt that this made our shared journey, and hers particularly, infinitely better than it would’ve been without the pt and activity she engaged in. i hope you’ll be able to continue doing the miracle making you already are, janet! strength to you. timothy hudson just when i think my heart just can’t break any more, i’m startled by the cruelty of this terrorist in my beloved’s brain. i’ve sought answers relentlessly, and when i found you, timothy, every prayer was answered. thank you for your kindness to all, your refusal to judge us carers harshly as the flawed individuals we are, and for “getting it” when it seems our voices go unheard and unheeded by so many who simply don’t yet understand lbd. i think my beloved is phase iv and declining. i brought him home from an extended stay in the hospital for congestive heart failure, and we have a “new normal” but, so far, we’re making it. i have a caregiver to help so i can continue to work (that is my respite) during the day, but have two full time jobs in the evening and night. he is bed bound, and i’m working hard to change that. bless you for the miracle you are and for wishing strength to those of us who wonder at times how we’re going to take the next breath, exhale it and go on. without your site, i would never have known what “normal” was. being so resourceful to be able to bring your beloved home after a long stay in the hospital for heart failure. that is no small feat! it seems you have great insight, and also great skills and abilities, and have accomplished a great thing, despite the cruelty of the condition. having work to go to, as respite for yourself, works very well for some. i’m glad it continues to do so for you! and you’re doing much, much more than figuring how to take the next breath, exhale and go on. you’re making a miracle. thank you for your kind words, sheryl   they mean more to me than you could know! strength to you! timothy hudson and to you. my dad has not been diagnosed with lbd. my sister is convinced he has it, me not so sure. my dad has pretty much all of the physical ailments and a lot of the mental ones, hallucinations, his depth perception is bad, he feels like he has to hold the wall to stop it from getting to close. he sleeps for up to 44 hours at a time. i am not exaggerating! he usually sleeps for 16 hours, but will have some weeks where he will sleep 36 44 hours a day. and i mean sleep, where it takes a good 5 10 to wake him up to take his meds. then right back to sleep. his blood pressure dropped to 60/44 at the drs this week. you can hold a conversation with him. it is just that he talks about bizarre things that happened to him the day before, and he hears birds chirping, people cutting their grass and people cutting down trees. he can name the people and where they live, but ‘hears’ them doing all these things. he knows everyone in the family and he knows if someone is missing. his short term memory is very bad. i just have a hard time in seeing the “dementia” part of lewy body dementia. hi kathi   sorry for what you’re experiencing, no matter what is the root cause. the majority of people with dementia have more than one type in the mix, for example alzheimer’s and vascular, or fronto temporal and lbd. very common to have vascular dementia in the mix, so diagnosis is super hard. it depends which part of the brain is affected   for example, some people will have strong lbd cognitive/behavioural aspects, but almost none of the tremor or rigidity of parkinson’s, others will have the reverse. so it seems that in his case, his memory is quite good, which is only one piece of the potential diagnosis. no matter what, i hope his treatment is sound, and you all are able to have the best journey possible, under the circumstances. > strength to you! timothy hudson hello timothy i have a question about the stages. my husband has all the symptoms of stage 3 and some of stage 4 and stage 5. where would he be classified? the neurologist said stage 5 because he put him on nuplazid. hi jean   that’s super hard to say what stage he’s in. i don’t really advocate for using “named” stages since most people will exhibit elements and symptoms from several, at different times, and move or jump back and forward between the so called stages. i think the best way to treat phases and stages is much more like broad guidelines of what to expect on a continuum of unknown duration. just like “average lifespan of a person with lewy body dementia,” it’s just that   an average. there are people on the far reaches of those ranges, from horrifically fast to incredibly slow. so in relation to your question about nuplazid, i think that whenever it’s prescribed is a good time to start, and i would not assume that your husband will not rally back a stage or two, nor that he could   unfortunately   jump ahead. prediction and expectation are risky to one’s sanity as a carer. acceptance is really the only way one can proceed with the least pain. which is extremely hard, but likely much easier than non acceptance, and will help both of you. all you’re doing for your husband is making an incomparable difference. truly. strength to you! timothy hudson my husband is stage 4 5, bedridden, sleeps a lot, still recognizes me, low whisper. he was very aggressive to caregivers so was put on nozinan in addition to his current trazedone, rivastigimine and quetiapine. nozinan is used for terminal care issues in addition to psychosis, am i to conclude we are nearing the end of this terrible road? thanks for the great information. very sorry for the many punishments your husband and you are being subjected to, julia. i can’t comment on that particular drug   it’s not one i’m familiar with. i would expect the medical professionals are trying to make things as safe as possible for you and for him   with the aggressiveness being a distinct risk. i would ask the neurologist or specialist whether it’s possible that he’s on too many anti psychotic drugs, or might be having contraindications from this combination. people with lbd often react to drugs in the opposite way the drugs are intended to work. it may be that his aggression could be aggravated by the combination of trazodone, quetiapine and nozinan. your specialist should be able to advise you on that, but it sounds like it would be worth inquiring about. but the condition varies so wildly that it’s very difficult to know with certainty. > you’re doing an amazing thing for your husband, in such terribly difficult conditions. strength to you, julia! timothy hudson my husband was diagnosed with parkinson’s four years ago. within a year we realized he had lewy body dementia and he retired three years ago. within two years he had a psychotic break and had to enter a memory care facility. one year later he is in a memory care nursing home. he is in stage 5 and in hospice care. but my question concerns weight loss. on april 1 he weighed around 150 pounds. he is 6’1”. on april 24 he was 143 pounds and today may 21, he is 136. a loss of 14 pounds in less than two months and he eats everything in sight. cleans his plate and drinks 2 ensures a day. recently his mental functioning has declined and he only recognizes me about 60% of the time. did not recognize our younger daughter this weekend. i’m afraid i know the answer, but what does this mean? or what could it mean with respect to the progression of the disease ? that’s a punishing journey for you and your husband, nancy. very sorry for how things are going. a doctor told me that the weight loss is very common, and seems to be from the reduced ability for the body to process the calories effectively, which appears to be a result of the autonomic nervous system dysfunction that accompanies lbd for many. the doctor had said that early in the condition, eat as much as is desired, don’t worry about weight gain, that it’d be more of a problem about weight loss that’d likely occur. it certainly seems that way for your husband. i can’t comment on what this means in terms of timing or progression, since everyone can differ so broadly. only to say that he is so blessed to have you, and your daughter visiting him, and being both his advocates and his angels. truly. you are doing a powerful thing for him, and are making the best out of such a difficult situation. strength to you and your family, nancy! timothy hudson timothy, please allow me to address the caregivers. i wrote to you nearly a year ago when my wife was exhibiting nearly all of the traits you listed for the final stage of her illness. we are still here, still struggling. it is clearly more desperate and time is running out, every bite of food, every sip of fluid is a victory. as our battle nears its end, i find myself asking why and how do those who provide the care their loved one’s needs sustain themselves? we all hear, “take care of the caregiver”. i question whether those who say this have ever been true caregivers. in all my years the most difficult title i have borne is caregiver. every day, we wake thinking of what we need to do to get through the day. we lie in bed every night planning the next day. we bury ourselves caring for another. we would be less than human were we not to feel there was an injustice in our situations. keeping a brave face to others while having a cancer growing in us questioning the “fairness” of life. life is not fair. i want to believe we continue because of love. love never surrenders. love never, ever gives up. i am uncertain if this message has either clarity or meaning. i just want those who travel their lonely paths to know they are not alone. there are others with them. not on the same path, but ones adjoining theirs, all struggling in the same general direction. in the end, if we can say, ”we did our best. we did all we could”, we will at some point rest more easily. god bless you all. hi thomas: i can’t recall a more poignant message ever, nor one that touched me more deeply. thank you for posting that   i believe many people carry great guilt about questioning their lot, how this is fair, why are they being punished. and there is no answer, really. there is, however, comfort, knowing that one is not alone at all, even when not connected directly, to an army of people silently doing the utmost to make the lives of their loved ones the best they possibly can be. we function in some ways like undercover agents, throughout the world, unable to easily communicate with each other, but fighting relentlessly for the same goal. i’m genuinely, and powerfully inspired by your reminder, that so many of us can look back upon, that “we did our best. we did all we could.” for me, there is no greater pride, and that has sustained me a great deal in the years since my loved one died from lbd, and i continued to care for another loved one. to you, friend, resilience and strength. timothy hudson thomas, how appropriate it is that your name is also the name of a great american revolutionary and…the writer of “common sense”, a little publication with such strong words seeking independence from england. those words helped galvanize the american people to lunch a revolution. your words, your writing, amount to the most beautiful tribute i’ve ever seen to caretakers, and your statement is a challenge to most of today’s self centered population who have no idea about the love and sacrifice you live with and offer to another every living day. just as few people know about lewy body, most people don’t want to know about caretaking. your statement should be posted in every doctor’s office in the americas, to start a health caretaking revolution. my partner and i are posting it on a wall next to our front door and we are making copies to give every doctor we see (there are so many), and ask that they post it in their offices. what a title: “we did our best. we did all we could.” thank you for your gift and god bless your every waking day! ne’er truer words spoken, bill! timothy, thank you so much for this article. my husband, who is 62 yrs old was diagnosed with multiple system atrophy with lewy bodies. this has been a 10+ year journey just to get a diagnosis. and now trying to understand what is to come has been difficult. i have read many articles trying to see what lies ahead and this one has been the most helpful. right now we are most likely at stage 2. he is still highly functional, but with symptoms that have been addressed with medication. and this has helped. i am terrified for the future, but we are truly taking this one day at a time. thank you again. carol thank you for your kind words, carol. i’m glad the article was helpful to you. the combination of any two cognitive impairments can make diagnosis extremely difficult, since they may have very unique or atypical presentation of symptoms, and response to treatments. i’m glad there’s now a diagnosis, and i’d be inclined to describe msa and lbd as being on the same spectrum, so i hope the treatment is effective. your husband is very fortunate to have you as such an excellent advocate and researcher. i hope things go the very best possible for you both. strength to you! timothy hudson timothy, i somehow stumbled onto this forum or blog, whatever. your outfit did a fine job with the “possibilities” article about the stages/progression of lbd. when i saw your article, my first thought was how excellent it was, and my second thought was that i seem to now find myself at the end of the line with this disease. not the last phase where i get to die, but the phase just before that one. i won’t go into all my problems, but the bottom line is i seem to have 95% of all the bad things related to lbd. and i am tired of all of this, but i promised my wife i would not kill myself so long as she promised to help me die when i become bed confined with minimal to no quality of life, except for being able to breathe, have bowl and urinary incontinence, blood pressure plunges that would knock your socks off (as in plunging down as low as 60/48 or even lower). my wife is a retired doctor, and she can’t understand how i can be standing and able to talk when the bp goes so low. so, yep, i have almost all of the autonomic dysfunction stuff. i can hardly be heard when i try to speak, which is probably for the best since i have trouble coming up with words or staying on track. oh, yeah, the hallucinations, delusions, and other such things are alive and well inside my head. and the parkinson’s stuff makes movement difficult much of the time, and painful most of the time. i can’t really think much anymore, because i can’t remember what i am thinking about…some piece of my thoughts enter my brain a few seconds before they leave my brain not to return. and yes, i can still type and express myself when i am typing. i think that is because i can focus on the words, letters, and thoughts as i type through what it is i am trying to say. sometimes i totally blank out in the middle of typing, but i am usually able to get my communication across. i would love to know how this is possible, but i am not asking anyone to answer that question. i really just wanted to say that i cannot believe how much time and effort you put into your work with people who have lbd and their caregivers. you are doing god’s work for sure. the end. bill. thanks for your comments, bill. your lucidity is utterly remarkable, considering you have so many of the other symptoms. i’ve not known persons to be able to communicate so well by writing, but your suggestion that you can focus more on the words, letters and thoughts as you write is very interesting. it may be that more people can still function in this medium, even when speaking is greatly compromised, as you report with yourself. thank you also for providing a perspective of a person with the condition. mostly i get care partners and professionals who comment, so your input is greatly welcomed. i hope that your journey, which must be especially benefited by your wife being a retired doctor. strength to you! timothy hudson yep, i often wonder how i can be so lucid, but being lucid in person and in writing was very important in my prior life. i guess my brain has found a way to connect for this purpose, but like everything else, this also fluctuates throughout each day. and some days confusion in my mind and body movements renders me unable to type or be lucid as you say. i belong to a group sponsored by the lbda, and this group is open only to people like me who have diagnosed lbd, and the lbda goes to great lengths to prevent fakers and frauds from getting into the group, and the same moderators will kick people out when it becomes clear that they are fakers or frauds. there are around 160 members in the group who have lbd, the vast majority of my fellow members are below age 70, and a lot are below 50 and 40, plus a decent size group in their 30s. i say that maybe half of members have many to most of the same symptoms i have, but many of those folks would likely say that they are early to middle phase of their journey. i said before i had all the symptoms for the grouping just before the one where we get to die, but upon re reading your article, i believe that i am solidly at the end of the fourth phase. anyway, who really gives a damn about all of this, because we all know how this ends, and we all know what awaits us as we move towards the end of our journey. now here’s the deal, across the membership of the online group, almost all of them have most of the symptoms i currently have, although most of them would tell you that they are much earlier in their journey than me. and fully 15 to 20 percent of members are every bit as far along as i am, and a few might be further down the path than me. whenever i pass into the final phase, my guess would be that i will have already stopped typing and doing this type of communication. sadly, within our group, we have had a number of suicides over the past several years. you see, all of us have agreed to allow the chief moderator to call us or our primary caregiver in the event we fail to post for 3 or 4 weeks, but prior to that they would have already sent e mails and maybe phone calls to the number we gave them to call. in fact, i have asked my wife to call the lead person from lbda when i die to let her know that i am gone. over the past couple years, many members in the group have become almost like family to me. after all, they are the only people around who really knows what it is like to have lbd, as the doctors and experts don’t know anything about what it is like to be on the receiving end of the diagnosis. and by the way, my wife and i have been living in an independent living courtyard home in a nice ccrc for the past 2 or 3 years, and we moved there because on the same campus are separate facilities for assisted care, home care, memory care, and skilled nursing. my hope is that i die in my bed where we live now, and my wife intends to stay here after my death, except for the times she returns to our house in the mountains where we lived for 20 or so years prior to moving to the ccrc, and also where our son and his family live as well. i do believe this might be the last time i visit here, but i want to again tell everyone about the good things you are doing for the lbd families. cheers. bill. participating in an online group was transformational for me as well, bill. i’m delighted you’re in that group. i am a moderator of that group, but keep a low profile. i’m also the co administrator of the two largest online lbd care partner support groups in the world. i am 100% behind the format, although i am not a huge fan of facebook, it works exceptionally well for this purpose. it sounds like you got everything will in hand for the coming storm. it’s such a blessing to have your wife on the journey with you. big respect to her, as well! may things go the very best possible   you’ve certainly set things up to do so. strength to you! timothy hi timothy, my husband, who is 58, is between stage 4 and 5. he is in a nursing home where he needs 24 hour care. he has practically no verbal skills, constantly shuffles the corridors, will not sit down to eat, we have to walk with him and spoon feed him. he is incontinent. all his awakening hours he constantly is mumbling, point to the floor, pointing to the wall, pointing to thin air and sometimes just looks straight through you. our kids don’t visit anymore as it upset them too much. i hope for him his passing will come sooner than later. many thanks for your article as i refer to it often. regards andrea very sorry for how things have turned out, andrea. what a punishing ride for you, your husband and your family. i hope that even if your kids won’t visit him, that they’ll still visit you, and do things to help and comfort you. i know how hard this can be   i lived it as the child of a parent with lbd. but it’s different for everyone, certainly. many, if not most, people can’t do this. be proud. you’re a hero, and your husband’s angel. it sounds like he’s profoundly impacted by lbd, and like you, hope he will find peace soon, with things resolving the very best they can. in the meantime, remind yourself of what good things you do, and what an incomparable difference you make. it’s amazing! truly. strength to you. timothy hudson timothy. let me start by thanking you for all you do. it has been a great comfort for us and a learning experience. i wanted to tell a cautionary tale which may or may not help others. after fifteen years of struggle with lewy bodies, my wife of 38 years died last month. i promised her she would die at home, which she did, in her own bed. we did this through the support of hospice care. they were wonderful   and i have nothing, nothing, but good to say about them. however, my wife’s last two weeks on earth were a nightmare that no human should ever need to endure. we got through it only because my sister in law and my wife’s best friend were registered nurses. we sat by her on shifts 24/7. i will not detail what we needed to do. in retrospect, i should have transferred my wife to a hospital to assure professional comprehensive pain control during her final days. there were multiple issues: first, after years of hands on care 24/7, i cannot help but question whether i failed her in the end. secondly, her death and the ongoing suffering which spread over two weeks without fluids of any type (she would not, and could not, swallow) have scarred both me and everyone who cared for her. while i still support hospice, i would strongly suggest that if, in the end, you feel yourself getting in over your head, call for additional help   which may mean reaching out beyond hospice. one final cautionary: no matter how long you cared for your loved one, and no matter how prepared you think you are for them to leave you, that is an illusion. prepare for a very rough ride and seek help to carry on. god bless all, our fight is done. may yours end in peace for all concerned. thank you for those exceptionally compassionate, and very moving words of wisdom, bruce. i’m sorry for the loss of your wife. i agree with all you said. except for one thing: i do not believe you failed her in the end, whatsoever. in respecting her wishes to remain at home ’til the end, some other aspects needed to be compromised, and i do not think that she suffered more by being at home than she would’ve at the hospital, for different reasons. the home environment, while it may lack some level of pain management, has such powerful positive associations, sounds, smells, sights, even the acoustics, all provide comfort. and calm, especially by avoiding the constant beeping of equipment, and the hustle and bustle of a critical care area. as you say, i hope you also seek help to carry on. it is not easy, and we cannot effectively prepare, ever. but when one does everything one can, as you did, there is some comfort in knowing it was done well, and for all the right reasons. this is certainly true for you. peace and renewal to you. timothy hudson my husband had a brain tumor in 1997. i know he has side effects from whole head radiation and is also showing signs of stage 3 and 4 of your article. at what point do you feel one would qualify for hospice? thank you so much for so much information. hi kathleen: very sorry for the progression of your husband’s lbd. in canada, things are a bit different, but from pretty much everyone i know in the us, they all say that they wish they’d started hospice much sooner than they actually did. and if he’s not yet eligible, that’s ok   and you’ll have made the contacts. quite often, you may have a choice of hospice provider, so the early start may allow you to make a choice when it’s not yet a crisis. and that’s always good! strength to you. timothy hudson i feel that we are between stage 4 and 5 with my 76 year old mother. she is currently at home with my father and a god send for a caretaker! i work ft + and i am the only child that lives near. the responsibility is constantly overwhelming. my mother was diagnosed with parkinson’s, then dementia and most recently, parkinsonisms and not truly parkinson’s. i have asked her neurologist about lbd but she tells me it can only truly be diagnosed post mortem. my mom is almost completely immobile now, so i do not have the fear of her wandering off, getting lost, etc. she needs assistance to feed herself and all other aspects of daily life. the unfortunate added stress of my mother’s disease is that my father is and has been in denial about her diagnosis, treatments and capabilities. it’s hard to be the “child” and the “adult”. usually when we try to be proactive and make suggestions or decisions we are met with obstinate and and indecisiveness and end up about 3 months behind on everything. my father, while i know he loves my mother after 55 yrs of marriage, does not have patience. there are times i find out that he has left her home alone to run to town. he won’t consider ltc but depends on someone else to care for her. i feel there is so much more to her life that we can enjoy with her, but he can not see it. as long as i have her still, i want her days to be filled with as much joy as possible and if that means giving her doll to hold or just laughing with her at the craziest thing she said, that is what i will do. but there is always that voice in the back of my head saying “are you doing enough?” this is the first time i have shared in a public forum, i don’t know what i planned on accomplishing by posting, other than getting my thoughts out. prayers to all who have posted here. thanks for letting me share. very sorry for the difficult situation you and your parents are in, tammy. it sounds like you and your dad are both doing your very, very best, with your mom’s best interests at heart, 100% of the time. there will always be differences of perspective. but with him being there 24/7, sometimes a break is needed, to maintain any sanity and patience, so going into town may have risks, but they might be smaller than the risks to his own well being by staying. just getting away briefly can be re energizing. i was in a very similar position at one point, and in retrospect, i know my dad made absolutely the right decisions about the care for my mom, and keeping her at home, although i strongly felt (at that time) that ltc would be better for them both. but since he was unwilling to go, himself, it would’ve been utterly cruel for them to be separated. and in addition, her staying at home was the very best environment for her, although i stopped working, was there every day, and we also had to hire additional help. the most dedicated, compassionate carers always ask whether we’re doing enough. i understand your position. but when you’re doing the very best you can be, researching and trying to persuade your family, making the most of the time together, and being forgiving   to yourself, and to them   i assure you that “you are doing enough.” i hope you’ll find energy, insight and optimism to continue making the most of the long dark of lewy. you’re doing a good thing. be proud. continue. strength to you! timothy hudson thanks so much for your very clear, concise real and very well explained reports about this kind of dementia, much less known than the most renowned alzheimer’s and parkinson’s, and so difficult to diagnose. it took years to get the right diagnosis for my father, even more difficult because for a long time he refused to go and see a doctor. i have to add to your list of symptoms that with my father   who is now in his latest stage   it all started around 10 years ago with terrible nightmares almost every night but nobody paid attention to this, we all thought he was stressed for too much work and too many troubles. the caregivers are a much more precise source for information because they see every change, every difference and every single symptom. unluckly we did not pre emptively protect the family assets that were all managed by himself, and we are now having huge problems in trying to deal with them directly. in italy a judge protects the assets of the person with dementia so it is really hard to financially assist him because every expense must be authorized by him and no properties can be sold without his permission. he didn’t want us to manage them because he was afraid that we stole money (sic!). your explanations of the differente stages also for the caregiver are also very well described. it is exactly like this, my mother got collapsed vertebra due to the many months of trying to help my father with showers, alone, because he didn’t want any assistance other than hers. i have to add that in the later stage my father gets very violent and aggressive but only when the nurses and assistants wash him and change his diapers, to the point that from 2 3 people are needed to do the job. we tried any kind of medications to diminish these behaviours but the effects are exacly the opposite, he get angry and shaken all day long so that now doctors gave us no medications at all. my father is at home, we are experiencing the same situation as timothy’s, we had to decide for ltc or home but we all decided that home was a more protect place to be. he is scared of loud voices, loud noises, violent lights and sudden movements of people around him and in our ltcs nobody knows about lbd yet so it would have been a cruelty to let him live in that kind of environment. at home we speak softly, we try to move gently around him, there are no people, tv, pictures or painting or mirrors that can scare him. it is really really, really tough! caring for this kind of patient is really demanding phsically, mentally and financially. we have my mother, three children who in turn go there twice per day, one daily caregiver plus two nurses who come morning and afternoon to help and wash/change diapers, catheter etc. we love our father so much and my mother has been loving him and only him for over 55 years but we must confess that sometimes we wish he passes away soon. this disease took him away: his life, his dignity and sucked away, all what he was, leaving us only a void and empty and angry body, most of the time with hallucinations. this is not life. i’m sorry i seem so negative, but lbd is worse than death and sucks away our lives too. wow, susanna. what a hard road your family is on. but what great insights you have, and such incredible care you’ve put in place for your father! your understanding of the triggers that set him off is exceptional. and your family’s collective care for him is amazing indeed. i’m sorry this is met with such anger. as for the bathing/showering, it is not uncommon to have strong, even violent reactions since it is such an intimate activity, and i can imagine i’d lash out very nastily if someone was trying to take my clothes and put me in a shower if i didn’t understand, didn’t think it was needed, didn’t want it etc. there may be techniques that can improve this, such as more gradually introducing the idea, warming the room, and towels, allowing him something to drape over him in the shower for modesty, not “muscling” him against his will, running the shower at much lower pressure, and being very careful not to make it too hot or cold. i hope you get some stability. i understand your situation very well, and how it makes you feel negative. but in time, that will be transformed into pride for what you are doing. for the difference you make to your father’s life. in the meantime, strength to you, susanna. timothy hudson hello, my mom was diagnosed with lewy body dementia and parkinson’s disease back in december 2019. her symptoms are in the future. 1. interferes with a person’s capacity to perform daily activities. 2. confusion about time and place, and difficulty with language and numbers. 3. may stare into space for periods of time, seem drowsy and lethargic, or sleep for several hours during the day despite getting enough sleep the night before. 4. the person may seem better one day, then not the next. 5. seeing or hearing things that are not present. visual hallucinations occur in up to 80 percent of people with lbd, often early on. 6. rem sleep behavior disorder a condition in which a person seems to act out dreams. it may include vivid dreaming, talking in one’s sleep, violent movements, or falling out of bed. 7. depression 8. anxiety 9. paranoia 10. people with lbd can also experience significant changes in the part of the nervous system that regulates automatic functions such as those of the heart, glands, and muscles. the person may have problem with blood pressure, urinary incontinence, and constipation. 11. parkinson’s disease: shuffling gait, slow movement, or frozen stance, balance problems and falls, loss of coordination, reduced facial expression, difficulty swallowing, and a weak voice. what phase is she currently in? this has been really hard seeing my mom struggle. she is the most sweetest and amazing person. i love her so much. thank you for all of your information. blessings. hi jen: sorry for the challenging conditions for your sweet, amazing mom. as with all the so called phases of lbd, the symptoms typically overlap, and you can have several from many different periods. this is only intended as a guideline. i would never say there are firm, immutable phases or stages with lewy body dementia. the only thing we can do is love them, and accept and adapt and advocate to our best ability. what you’re doing for your mom will be transformative, throughout the long dark of lewy. you’re doing a good thing. be proud. strength to you, timothy timothy: your work, the knowledge and compassion expressed in your website and in this article on stages/phases of lewy body dementia are extraordinary. after watching the film “awakenings,” about the great doctor oliver sacks (played by robin williams, himself diagnosed with lewy body dementia, who killed himself) and his findings that the drug l dopa could have dramatic benefits for patients with parkinson’s symptoms, i went searching the internet for information. specifically, i searched for carbidopa/levodopa   the modern medication i’m taking for my lewy body brain disorder and that my late wife took for her parkinson’s disease. i discovered your site and was dumbfounded! there is so much information and guidance available   and found nowhere else. thank you for your help to so many others. as you may have noted, i have been wearing two hats   one as a caretaker and another as a care recipient. in both cases, the initial indication of an apparent health issue came while driving a car. my wife, then a real estate agent, got lost on the streets of washington, d. c., driving clients around neighborhoods she’d traveled for decades. i got lost on the streets of suburban cleveland, ohio, while driving as usual to my auto dealer for regular servicing   ending up in residential neighborhoods somewhere, totally lost. my wife lived with parkinson’s for a very long time   diagnosed in 2000, passed away in late 2019. taking advantage of the slow progression, we embarked on adventures we knew would soon be impossible   a lot of foreign travel, mostly with her in a wheelchair   to china, the baltic’s, italy, etc. i was her full time caretaker, with assistance from a home care aide who now helps me, until 2012, when 24 hour care became necessary and she moved to an assisted living facility, where i shared caregiving work with a wonderful and trained staff. my complex of disorders began in 2014 with a seizure and i continue to have epilepsy (seizures) today as one malady. in 2017, my seizure doctor became convinced there was something else happening and after testing he diagnosed fronto temporal brain (ftd) disorder. and he really shocked me by telling me that these two brain disorders were in no way connected! one was dementia, the other was seizures, tethered entirely to different sections of the brain. finally, as of this date, the epilepsy doctor became unsure of his ftd diagnosis and sent me to a brain specialist; after more extensive testing, that doctor diagnosed lewy body early in 2018. over the years the frequency of seizures, falls and unconscious times, as well as er visits and hospitalizations increased until the end of 2017, when trying out a new medicine (to me) has seemed to greatly slow down few and mostly mild incidents of epilepsy   thankfully! my wife remained relatively stable for most of her time in assisted living, her mobility failed from the beginning   she needed assistance getting in and out of bed or wheelchairs, going to the bathroom, etc. fortunately for the staff and myself, she could feed herself during most of the time there. her short term memory gradually failed fully, but large parts of long term memory remained better than my own declining recollection ability. inhibitions disappeared and she often shouted or spoke obscene language; our three sons said that was not unusual in any event. she talked of sex, and asked to go to bed with me, and told folks how “good” i was in bed   one time, loudly, in a dining room. a very sad part of her life in assisted living was the absence of visitors; i think our friends, her friends couldn’t face for long an environment of so many folks slumped down in wheelchairs, sleeping in a common area, etc.. at least two persons told me that they just couldn’t stand it. a man that became my partner during a phase of loneliness in my life, myself, a dog that was a constant and emotionally important support for me, plus the staff, were the only visitors to my wife. only in the final year did pain become an increasing issue for her, and activities such as feeding herself surfaced. by her 80th birthday, as the whole family gathered to honor her, she was seated in an elaborate wheelchair that folded down like a chaise. she had to be fed. deep inside, i know she was aware of the celebration even if she wasn’t able to express it well. five weeks later, in hospice, she passed away. i think i am extremely lucky and grateful to be currently in what is described as phase one of lewy body, moving gradually into phase two. most of the phase one symptoms apply to me and phase two has a start; i do have one element in phase five (swallowing difficulty, thus a slow eater). the carbidopa/levodopa has been started for me with a low dose, thus providing the opportunity for increasing this medication gradually as it hopefully extends my life in early phases, along with other meds. my caretaker/partner, who knew nothing about me and lewy body when first we met, and i both are fully aware of sudden ups and downs and eventual long term decline. already there have been times with a wheelchair, extensive weeks with a walker, and now mostly a cane. at a baseball game or museum, a wheelchair is always used to get to my seating area or to see exhibits. i cannot climb stairs nor walk a block. my long term memory has taken what apparently is a long vacation. my eyes are getting weaker, requiring new lenses for my glasses more frequently. of course, i can’t drive, a painful loss of independence and freedom. one important part of life   physically and emotionally   that might be added to your work is a discussion of sex. i have no idea whether you have approached this subject but i think it’s worth some attention. it would be interesting to know where folks think the ability/inability to continue sexual intimacy is located in the suggested five phases. to sum up everything i have mentioned above (not just sex), and i really mean this: my partner and i have a solid agreement   i must do, and can do, and must be allowed to do, everything as long as i can do it. and, just as important, i am surrounded by a growing army of supporters   my sons, their wives, their children, my nephews and niece and their children, my wife’s brother/his wife/their daughters, her close cousin and husband, our neighbors in a condominium and the staff here, my partner’s friends and members (including myself) of the congregation at the episcopal church where my partner is the preacher, the long time health care aide for my wife and now for me, the friends of me and my partner who we have met over recent years, staff at the assisted living home where my wife lived and where i maintain human relations as well take advantage of amenities such as exercise and swimming, the staff and visitors at a gay campground, and more! as i move to phases two, three and beyond and go through rapid ups and downs, i know my caretaker partner, my family, and all the others will help take care of me   and, just as important   help take care of him. your work is already providing important guidance for them. thank you. hi bill: thank you for your very insightful look into your world, the progression of your wife’s pd, and your own early experiences with lbd. it sounds like you have a stupendous, rich, and diverse support network   one which most could only dream of. you mention that sinemet (carbidopa/levodopa) has helped you greatly. i’m glad to hear this, and you’re fortunate to have it work so well, as it does for many. however, i know many people who have had things not go as well for them because of the side effects some experience, with very negative impacts on cognition and behaviour, which necessitated them stopping the med. you probably know already that the timing of it is important, to spread it out, and for best effectiveness, to not take it with protein. always ensure you consult with your specialist, i am not one, and only offer a bit of personal experience for context. i’m glad you have a doctor who understands! as for the sexual aspect, it is important for many indeed, and isn’t dealt with here in any significant way. the reason for that is that i have not heard enough consistency of experience: it really warrants a separate article, and some rigorous research to investigate it. as a one man operation, i can’t yet undertake such an endeavour, but i suggest you have look at my friends’ website, and specifically the five part series of articles which touches on lbd, love and sexuality. i have great respect for the authors, the whitworths, and they are what i consider to be the gold standard for information on all things lewy related. if you are interested in a great, supportive online group for people living with the condition, as well as two stupendous groups your partner could join dedicated to carers, i personally co administer or moderate them all, and found them to be the very best sources of support and compassion in this journey. i’d be happy to respond with direct links to these online groups on facebook. thank you for your time and thought. may your journey be the very best possible. strength to you! timothy hudson hello timothy, i appreciate your helpful suggestions. specifically, i’d like to have those links to facebook groups; my partner uses facebook and he has been able to become a friend on your lewybodydementia facebook page. also, i’m looking forward to checking out the whitworths’ articles. your sinemet advice is very important, and a bit more clear than my lbd doctor’s explanation. he has started me on very low dosage, leaving room for many increases over much more time until side effects become an issue. however, i don’t remember a focus on less protein (maybe dr. lewy’s impact on memory), so i’m going to start paying attention to what i’m eating. peace to you! hi bill   sorry for the slow response. i’m a one man show, purely volunteer, so things are often not as speedy as i’d like. here’s the links to the groups lewy body dementia carers (for care partners primarily, i co administer this group) lewy body dementia support group (also for care partners, i co administer this group as well) living with lewy body dementia (exclusively for persons with lbd, not care partners, i co moderate this group) reliable articles and info on lbd (i publish this, and curate and summarize every post personally) hope this helps. strength to you, bill! timothy omg tim, i found this information very helpful! my mother has lb dementia  not sure what stage she’s fluctuating between. anyway i am from australia and finally was permitted to travel to the usa to visit mother with my sister, my mother lives here with my other sister who has been the main care giver. we are here for 6 8 weeks to provide respite and support for my us based sister, who has provided round the clock care 24/7 for mother and housed her in a separate one level home. we are able to care for her in an semi independent environment with three nurses on shifts, a neurologist is prescribing heavy doses of meds for her agitation and anger outbursts, and we have an exercise therapist and doctor on call. (mother is luckier than most in her situation) the last week she has been very confused especially as this new abode is not her familiar surroundings, however she is unsure where she is when she does visit my sister’s home anyway now. the dilemma is with every time we transport mum from her new ‘home’ to my sister’s place in the afternoon, for dinner with the family (as it seems to take all day to get herself organized) she becomes incredibly agitated when she has to leave my sister’s home to the point she becomes irrational, abusive and agitated when she has to leave to go ‘home’ 5 mins away. the other evening she refused to go inside with her caregiver, abused her verbally and lashed out physically, ran out onto the curbside and screamed for the police to be called, we were contacted and all three sisters headed straight over there to settle mother take her inside and deal with the neighbour’s concern and police! we now are keeping her at her ‘home’ and taking turns in visiting mother for lunch and dinner, trying to create a routine and schedule around mother. my sister and i will be returning to australia after the holidays…. with the holiday season coming up ordinarily she would travel with the family to celebrate thanksgiving and christmas, however i realize now that this may not be possible and that moving mother out of her strict routine we have created will only sabotage her sense of calm and affect everyone (as she is so narcissistic and controlling!) the guilt of not including mother in this very special time is excruciating! (although after reading your blog i am starting to realize how insideous this disease is!) does anyone else have any strategies to help us get through this 1st thanksgiving holiday season with the possibility that it is ultimately best for mother to stay home and for her strict routine to be enforced? help please hi kirsten   thanks for your note. it’s wonderful that you’ve come from aus to be with your mom for an extended stretch. to get right to your question, i think you have to adapt your own expectations, not your mom’s. in my experience, routine is one of the most critical elements to maintain. that may seem limiting, but for many, it’s the difference between as much harmony as possible, and significant problems. for us, personally, this meant we didn’t make big celebrations, we didn’t visit multiple locations, we never spoke about any event (even a routine visit or appointment) in advance, and kept things as calm and unchanging as possible. it appeared that any change was almost too much to take in, and led to much anxiety and difficulties for my mom, and everyone. instead, we did micro visits, more frequently, with fewer people, for shorter times, and with the fewest changes possible. at thanksgiving, for example, we’d have everything prepared elsewhere, and would bring everything prepared, in small quantities, and with only one or two people, over several days. she loved the quieter visits, and could take them in much better. oh, and i always said “i forgot to tell you” and “i’m sorry, i’ll do better next time” about any upset, real or perceived   this satisfied her many times. there was no going out, going to restaurants, or having full family gatherings, but in the end   everyone who remains looks back on their time with her as being the best it could possibly be. i’m sure it’ll be similar for you and your sisters, and especially your mom. strength to you! timothy hudson grateful and a bit overwhelmed to find that the lbd caring spouses phases continues to be useful to so many families. i have not read all of the comments but plan to do so when time and tears of gratitude allow. thank you timothy hudson for posting the document in its entirety. humbled that our work remains meaningful. with tenderness, sue lewis, msw,rn and harry from afar hi sue: so nice to see you check in! i’m sure you and your co contributors never imagined the work you did would have such vast reach and visibility. it’s still my favourite, and i know countless people have benefited from it, in profound ways. it is a gift to so many, and to those who are in such need. thank you for your contributions and dedication to others, sue! strength to you! your friend, timothy hudson my mother has some symptoms from each of the last 3 stages… she lives in an alf, walks very little and definitely has the lewy lean.. she needs her food cut up for her and makes messes like a toddler. she’s incontinent and hallucinates a little bit.. if she is given controlled pain medicines, she hallucinates very badly and becomes combative and verbally abusive. thankfully she has been very calm for about a year now but she spends her days in her lift chair and wishes she could do things she did about 10 years ago. she is not able to drive her scooter anymore, can’t see well enough to read anything, and used to fall quite often but she’s gone about 6 months now with no falls… it’s so strange how she is strong and clear one day and sounds drugged and sleepy the next. after researching for a year into my fathers very rapid and heartbreaking last few weeks in hospital before death i now have answers! he’d had parkinsons for 10 years but was still living a decent life, holidaying and socialising. he went into a coma like stage within 48 hours after being admitted into a mental health unit to control his hullusinations and dulusions! we were convinced there was neligence and have just had a hearing. however everything seemed ok after this, but i still couldnt get them to explain how parkinsons would have made him die the way he did. i now know he had lbd although never diagnosed. we had no idea but these symptons were him. he just missed a stage out thats how rapid it was at the end! thank you for putting my mind at rest at last that it was his time to go! i am seeing some lbd symptoms in my 72 year old husband. his father had the disease and died. is this disease hereditary? there is some potential connections with heritability of lbd, but it is not yet conclusive. i do not believe there are any gene tests, so far. i wrote last week …. but have not seen it or a response. i am not that internet wise … am i doing something wrong? hi jo ann: i didn’t see your post. there might’ve been a problem with the internet somewhere. please try to post again. i hope you have some luck posting this time! strength to you. timothy in your experience does the rate of progression remain consistent through all of the stages? if the decline starts slow and steady will it remain slow and steady? does a slow start generally mean a longer life expectancy? my husband starting showing early symptoms 2.5 years ago at age 57. does a younger age starting point mean a potential slower progression with a longer life expectancy? hi mary: sorry for the situation you’re in, particularly with your husband only 57. i don’t have data to provide you with valid answers to your questions, unfortunately. however, in my lay person experience (i am not a doctor nor clinician) there is sometimes a rapid progression with early onset, and the speed of onset does sometimes seem to correlate with ongoing progression. however, that is far from consistent, and i would be encouraged if he started showing symptoms 2.5 years back and things are not yet dire. again, this is all with the caveat that i’m only speaking of this based on my experience in support groups and the online forums i administer. not from data. i would certainly like to see data on progression rates, but there is already some significant issues with data, in that it tends to skew towards results based on more males, and wealthier caucasian individuals, from what i recall reading recently. i think this is consistent with all forms of dementia, so the results, if available, may not be accurately representative. regardless, he’s very fortunate to have such a caring partner as you, and your research and advocacy will lead to the best possible journey, something to be proud of. no matter how things progress, you’re doing all the right things, and will make things the very best they can be. strength to you! timothy hudson. hello timothy: thank you for putting this info together in one place by folks who seem to really understand the symptoms and progress of lbd. sadly my father in law had lbd at 51 years old which is young, that was sad to watch him deteriorating over the 7 yrs up to death. even sadder for me is his daughter (my wife) got it at the same age she is now 58 years. i am keeping her at home to care for her, it is tough. today the doctors are putting a paletive care package in place as we are nearing the end of this nightmare. i wonder how common it is to inherit it? i enjoyed reading the article and comments and would just like to thank you . kind regards philip from across the pond (uk) wow, philip. that’s a very sad tale, especially for happening at such young ages. you are doing such a powerful, profoundly and deeply meaningful service to your wife, as you both did with her father. as for inheritability, there does seem to be some evidence when there’s early onset. i don’t have the full data to provide you, but i have read and investigated this fairly extensively. it’s something many people want to know (and hope isn’t the likely path for them or their family members). i will see if i can get the exact sites to provide further information, but i know i have a few scientific articles i have curated and summarized on my companion site on facebook, which you can look at if you’re interested (you don’t have to be a facebook member to view the articles and summaries, which i do personally). and if i can locate the best ones, i will try to send them to you directly, but i don’t know if i can guarantee that. in the meantime, strength to you   you’re doing amazing things. be proud, if you can, amidst the great sadnesses. timothy hudson my mum has stage 5 parkinson’s lewy body . she was very shaky recently but last few weeks has gone very quiet sleeping most of the time and eating less . she has been bedridden for 2 years shouts out sometimes , it’s almost like she is making peace with herself . she has no recognition of us for these last few years just stares into space. no quality of life and can’t do anything for herself . i am wondering if the new peace and stillness is a sign we are nearing the end . sorry for what’s happened to your mum. it’s so hard to know when the end may come. i tried to always be prepared, but was still surprised when it came. i hope you can make as much peace between you as possible, for that will last and last, when no further peace can be made. strength and grace to you. timothy hudson this has information has been very helpful. my father has lbd and after reading, i believe he is definitely in stage 5. i pray for the end to be near. as much as i don’t want to let him go, it’s worse to see him like this. he cries and cries out for his parents, his distress is almost unbearable. he doesn’t speak anything that is coherent, every once in awhile he must have a thought that tickles him because he gives a little chuckle. that and being there for him is the only thing that makes it at all bearable. my mom is his primary caregiver, we have a live in assistant and he’s on hospice care. i pray for his peace and i pray for us to get through the loss. it’s a horrific disease and i pray for all that get diagnosed as well as for their families. i hope the peace you pray for comes soon, accompanied with grace, cyndi. you and your mom are doing such a powerful, painful, and profoundly good thing for your father. even when you are unable to fix it all, you’re making an incomparable difference, and making things the very best they can be. be proud, amidst the sadnesses. strength to you. timothy hudson a truly remarkable and helpful site. thank you. i care for my bride of 40 years…diagnosed with lbd two years ago. a truly cruel disease…she’s declining more with every passing day. no children…i’m on my own, but will care for her ’til my final breath. it’s heartbreaking to watch a once vibrant, carefree and loving woman be reduced to this. thank you again for the vital information you provide. please know how much you all are appreciated. thanks for your kind words, bill. and i hope you feel the same appreciation going right back to you. caring for your bride through the long dark of lewy is a herculean task, especially when doing it solo. be proud. you’re making an incomparable difference. please make sure you also care for yourself   she’d want that. and it’s easy for us to forget that, in our laser like focus on our loved ones condition, that they would want the best for us, and taking care of ourselves, and being kind to ourselves, is what they would want, and doing so respects them, as much as caring for them directly does. you’re doing a profoundly good, powerful thing. strength to you. timothy hudson pingback:lewy body dementia: a biological, historical, & psychological overview   the scholar practitioner thank you timothy hudson for your reply to my comment and your kind words. it meant a lot to me. also thanks for the informative and relatable page that made me feel less alone in this struggle with my dads decline. i’m glad you found some solace and useful information here, erin. you’ve done an amazing thing to research and find ways to improve the life of your father, despite the decline. i hope you can be proud of what a difference you’re making in his life, and in inspiring others, as well. strength to you, timothy hudson i believe my mother has had lbd for about 7 years now, she is 84. between my brother and i we are taking care of her. she lives with my nephew and my brother but i take care of all her physical needs every day. she has to have help with changing depends, showering and i prepare her food. six months ago she was very psychotic and we didn’t know what we were going to do. her doctor suggested trying aricept and it has made a huge difference in her psychotic behavior, she is calmer and not as angry and depressed all the time. i haven’t seen anyone mention this medication on this forum and just wondered if anyone else has seen success with this drug. full time care is still very overwhelming for my brother and i but we are grateful that we have each other as my sister just passed away 3 months ago from cancer. i do admit that i go into dark places at times feeling like i am in prison as i can no longer go places overnight to spend time with my grown children ( i have 7) and i feel like i’m missing out on grandchildren growing up and being able to help my children with different aspects of their lives. however with a lot of prayer i do feel my burden being made light and am extremely grateful for some of the relief this medicine has given us. this is a great place to vent and post frustrations of caregiving. very glad to hear the aricept has had such a positive outcome, shari. not everyone experiences such benefits, but this type of drug is commonly prescribed for people with lbd and alzheimer’s, and is a type of cholinesterase inhibitor drug, of which exelon/rivastigmine is another. some feel the latter has a benefit because it is also available in a “patch” form, as well as capsule, so if swallowing becomes a problem, the medication can still be administered by using the patch. may you and your brother continue to find ways to keep your energy and positivity. you’re doing a good thing. be proud. strength and courage to you. timothy hudson thank you for this article. it’s very helpful. my husband was diagnosed with alzheimer’s in 2015 and then with lewy bodies in 2018, when he was kicked out of a clinical trial in phoenix, az, for not having amyloid plaque (therefore not ad). it took 2 years at banner health to correctly diagnose his lewy bodies dementia even though i’d told his physician, that he was a violent sleeper and that i’d been kicked, punched, and screamed at during his sleep for 35+ years of marriage, indicating a rem sleep disorder. i was treated condescendingly and it would be another several years before he was correctly diagnosed, no thanks to the doctor who dismissed my input. (i specifically asked, “do you think it could be lewy bodies?” after relating his violent sleep behavior. that doctor was dr. anna burke, who’s lauded as a dementia specialist in phoenix.) i’ll be forever grateful for dr. pierre tariot who referred me to a lewy bodies/parkinson’s specialist, dr. david shprecher, who diagnosed my husband in 30 minutes as having lewy body dementia. i’m finding it very difficult even 7+ years into his dementia diagnosis, that there’s very little understanding from most medical professionals of lewy bodies dementia. my husband was a high functioning executive prior to his diagnosis, he’s able to perform, when he meets with his nurse practitioner, (it’s called “showtime” and is more typical of dlb, then alzheimer’s) where at home he’s angry and abusive and lower functioning. his nurse practitioner looks at me like i’m the one who’s demented. i don’t find this at all helpful as a caregiver. i wish the people administering care for lewy bodies were more informed about the nuances of this disease because frankly i’m fed up. very sorry for the slow process too the diagnosis you had, jane, although that is very sadly typical. most people see three or more specialists (and other diagnoses as well) before getting lbd agreed upon. among many reasons, part of the misdiagnoses is because so many conditions interact, and different conditions change in their dominance, at different times, and for the fluctuations of the condition, where   as you point out   he can have remarkable, lucid periods, especially when being assessed by professionals. may things improve, and stabilize. strength and courage to you, timothy hudson after reading this and some replies, i am messed up to be it nicely. i think my mom may have dlb but i’m not 100% sure as she has schizophrenia as well. i don’t know how i’ll find the strength to go through this with her alone. if there is a god, please help my mother. when there are other, pre existing, complex conditions like schizophrenia involved, getting a diagnosis of something like lbd would be exceedingly difficult, since elements of the two conditions have much in common. no matter what, i hope you will find the guidance and energy that you seek   she’s so very blessed to have you as her advocate and angel, robert. strength and courage to you! timothy hudson is there any suggestion of how long the stages can last? my father is home on hospice in the final stages of lbd. we are trying hard to provide the care he needs so that he does not have to be placed in a care facility (it would be an hour away), but it is very difficult at times. he hardly eats or drinks anything so he has very little energy, but he can still be stubborn and aggressive when reacting with his hallucinations. is there any indication of how long stage 5 can last? hi sandra: very sorry for what’s happening with your dad. i don’t think there’s any way to estimate duration of any phase, really, nor whether a person might go backwards and improve, or jump forward precipitously. the condition just seems too unpredictable, and especially when there are other co morbidities, as there usually are, unfortunately, this adds to the uncertainty. i think that the hospice provider will be best positioned to give you an idea of potential trajectory. and i wonder if he could be prescribed something as a “comfort” measure to help with the hallucinations, especially the aggression. in some cases, a non traditional anti psychotic has helped, and it seems the most commonly used one is seroquel/quetiapine, although some have had good results with a newer drug, nuplazid. your provider and specialist should be able to guide you, hopefully. he’s lucky to have you as his advocate. strength and courage to you! timothy hudson thanks for the article. i was reading this sitting next to my wife (65) while she lies in her hospital bed (in the uk) screaming unintelligibly. she can go on like this for several hours but the hospital have just given her some lorazepam to calm her. she is definitely in stage 5. some background   my wife a management accountant started showing odd behavior some 8 years ago. she must have known something was wrong in herself but never spoke about. she made a decision to retire early which i though was odd given her liking for what she did. then, about 6 years ago she started complaining about something wrong with her leg and was sent for physio. eventually, when this was getting nowhere and now with a forward stoop, she was referred to a neurologist who diagnosed parkinson’s (although she did say it could be a number of other things including lbd). sinemet was prescribed and things got a bit better including the stoop. a year later a different neurologist decided to double her sinemet and wow, lbd hit with a vengeance. capgras and reduplicative paramnesia were very apparent along with other delusions and hysteria. medics were called and they with telephone calls to drs diagnosed lbd. meds were changed and things settled down for the next few with her abilities getting gradually worse and the delusions never quite going away. i became a full time carer and together we just got on as best we could, with me providing more and more support. then just before this last christmas she had (another) fall. but this one was different; i established that nothing was broken but it took help from family to get her up and into bed. doctors, nurses, paramedics and occupational therapists came along over the next few days, but basically she stayed on bed from then on. a hospital bed, hoist, sara stedy, slip sheets and wheelchair commode were all delivered (thanks nhs) and professional carers hired. she spent the nights in bed and the day, dressed, in her motorised armchair. however the fighting and screaming with her carers, and me helping, got worse and to the point where drs recommended hospitalisation. that was 2 weeks ago and now she spend all her time in bed either sleeping or awake and shouting and screaming especially when being changed or moved. different medications are be tried slowly but i’ve only seen further decline. the lorazepam has worked and she’s asleep now. what has caught the family out is the sudden steepening of the decline. it has taken 8 years and she was at the point of needing help dressing and washing, but she still fed herself and would potter around the house (with the lewy lean) not doing anything in particular. now, 2 months after the fall she’s as i described above. the dr on the ward described this as the brain coping well despite its decline but there comes a point where it gives up or cannot compensate any more because too much has been damaged. my hope is that they get the meds balanced to the point where she is more manageable and she can come home to be be cared by me, with help, for her last months. my pain is not really knowing what is going on in her head and the thought that she doesn’t know any more how much she’s loved. thanks for giving me a space to tell our story. that’s a heart wrenching story, graham. thank you for sharing it. and for being such an effective advocate for your wife. you’ve made her very hard road infinitely smoother, and have made everything the very best it can be. although i hate that anyone has to travel such a road, i am inspired by the amazing things you’ve done, and the fabulous adaptations you’ve made, and tireless, compassionate and loving care you provide. nothing could be better. we cannot fix everything, sadly, despite heroic efforts. but you have made everything the very best it can be. truly. i hope she does get out of hospital soon, and that you can have more time at home. strength and courage to you. timothy hudson thanks for this article. information about symptoms by timeline is tough to find, but i can sadly see the accuracy in most of what is described above. my father in law moved in with us late 2019. he was diagnosed a few months later and has been seemingly on a pendulum every since with some of these symptoms. recently, it has been getting worse. the worse issue we are dealing with is his sleep. he stays awake for pretty much days with maybe an hour nap or so a day. he is active all night and pretty far along with the physical parkinson’s symptoms, making it unsafe without someone up with him. he’s on enough sleep medication to put down a horse with next to no effect. he acted even more psychotic when we gave him lorazapam. just trying to get him something that might help sedate him for rest and our sanity. any ideas if someone else has had something work better in that situation? that’s a tough situation, amber. many people with lbd seem to have the opposite reaction to what’s intended with some medications, and all the sleeping pills he’s on may be contributing to, or causing his inability to rest. this could be at play here, but it’s always worth seeking professional medical advice. i’m only relating what i know from my peers, and am not a doctor. at times where my loved one experienced a prolonged period of restlessness, it sometimes coincided with urinary tract infections or a chest infection. this seems less likely, but not impossible. i hope you’ll find something that helps reduce this, so you can all get a bit more rest. it’s nearly impossible to function otherwise. strength and courage to you! timothy hudson i have a parent who was diagnosed with both lbd and pd, latter over 7 and lbd over 5 yrs ago. the problem is that my step parent, a doctor who has no training in either disease, is the caregiver and is starting to refuse to see the signs of final stage and likely need for hospice. instead there is much talk of the patient needing to be around people and have more therapy; there is no discussion of palliative care and soothing meds, and to stop meds that may “hasten” the disease states. the patient is completely incontinent, can no longer walk or sit and has been unable to bathe, dress or eat for more than two years. when awake, eyes are shut 95% of time. can you recommend a hospice service in the us or other ideas to get step parent to see that a peaceful end, rather than transition to a memory care unit from home, is needed? thank you that’s a very difficult situation, when carers disagree on approach, cooper. i don’t really have a specific suggestion for your particular scenario, and looking for a hospice provider is very location specific. hopefully you’ll be able to contact ones close by, and interview them   they may be able to provide you local insights, with suggestions as to how best to proceed wtih your step parent as well. strength and courage to you! timothy hudson i’ve worked as a caregiver on a memory unit for 17 yrs. i’ve seen every form of dementia: alzheimer’s, pick’s disease, huntington’s corea, parkinson’s as well as lewy body. as you’ve stated, stages and symptoms of these diseases are varied. no two patients are the same. you have compiled a pretty good list of some of the symptoms to look out for. that said, one of our patients who has a lewy body diagnoses has a symptom i rarely see written about. she has a tendency to obsessively lick her hands and proceed to “wash” everything in sight. she only exhibits this behavior occasionally, but when she does, we cannot stop it….just have to wait it out until she tires of it, which can be hours. i’ve only ever seen this in one other patient, also a female, very early in my career. i don’t know if she was diagnosed with lewy body. have you heard of this symptom? it’s extremely obsessive compulsive and can be quite off putting to those who’ve never experienced it. thanks for an informative article! regards, br hi bill: thanks for your insights. as for the obsessive cleaning your patient exhibits, and who will not be distracted from it, that is not exactly uncommon, although the “washing” aspect is a little less common in my experience. but i”m not a clinician, just a person who’s administered support groups with 25,000 people currently, mostly carers, and they speak very openly about symptoms and oddities. even in the case of my mom, she would obsessively tear paper napkins into tiny pieces, then fold them, then try to eat them. there were other behaviours that could’ve been described as ocd. because of the organic, variable nature of both the condition itself, and the brain as a whole, periodic oddities are not surprising, even if some can be off putting, as you say. and another aspect that’s rarely discussed is the commonality of having “mixed dementia” where there’s more than one involved. from what i’ve seen, this is likely in more than half of all cases, but the diagnoses often focus on the dominant one, at the time of diagnosis, and the other(s) may become the dominant ones afterwards, sooner or later. in addition, medication impacts, and interactions, as well as dehydration, constipation, infection, etc can massively affect a person with cognitive changes from dementia, as well as having mental illness, entirely separate from the dementia. it’s certainly a convoluted experience, with countless variables. and even if i haven’t experienced this particular of licking and “washing” aspect regularly, that doesn’t mean its not common   it could be that if it’s not bothersome, people won’t report it, focusing more on the more traumatic or pressing issues. thanks again for your comment, and others may add to this with their own experiences. strength and courage to you. timothy hudson my husband was diagnosed two years ago. his first symptoms were wgt loss of 25 lbs and abdominal pain. then he could not remember how to put his contacts in. within weeks he could not remember how to work his camera, or how to work the computer, and soon he said he could not pay the bills. he started having dreams that he enacted. at the beginning he mostly was coming to people’s rescue. he had sword fights, he was chased by dogs, he saw animals and people that were not there, occasionally he would yell things like “put down your gun now!”. sometimes he would get out of bed and would use towels to flick people. several times he hit me in his sleep but as soon as i woke him he would apologize profusely. he was asleep. he did not mean to hurt me. once we got diagnosed with lewy body at mayo clinic, he was put on meds. he got better for awhile. his dreams became less active but more talking. he started being able to teach himself how to use his phone again. now two years after diagnosis. he has become more emotional crying over anxieties and sadness. he can not play games like he used to without lots of help. he says he is so aware of how much he can’t remember now. he looks at tax documents he used to send in and do himself and now he marvels that he could have done that. he was the smartest man in the room before lewy body dementia. straight 99% on standardized tests. an executive in a fortune 500 company. it is hard to watch at times. i am a nurse by profession. i did not know how hard this was on families until i experienced it. much harder than i ever dreamed possible. hard to watch, but harder when they forget that you love them. when they feel like an idiot because they can’t remember what a pear is. it is hard to watch the anxiety build as he forgets how to use the telephone. we are still fairly early in the disease. he can still drive and carry on conversations. he can still walk and take care of activities of daily living for the most part. it has been the hardest years of my life’ and we are probably at the end of stage one. i am committed to my husband and i love him, he questions my love at times because of my tone. it is hard! very sorry for what’s happening, roxanne. he’s certainly lucky to have you as such an effective, tenacious advocate. his automobile driving should, in my view, stop immediately. i realize this is a significant impact on his independence, and yours, but the potential for utter catastrophe and tragedy, in addition to potential legal issues is too high to continue. any condition that manifests itself with already experienced hallucinations and delusions, and has ridigity and muscle control issues from parkinsonism is one that should stop a person from being in control of a motor vehicle. it’s not hard to imagine the potential outcomes. this is something i feel very strongly about, and for your own safety, his, and all other people that might be impacted, literally. driving means a great deal to a person, to their self esteem and self image, and perhaps more so for most men than women. i recognize the blow this may be. but the potential consequences of not stopping outweigh any delay. were it me, i’d get a doctor   ideally someone unrelated to cognition   to be the “bearer of bad news” so that his trust in you as his staunch advocate never has cause to waver. an eye doctor, cardiologist, etc., may be able to do this. it allows your husband to “save face” since many are humiliated by the cognitive/psychiatric aspect, while they have a much easier time accepting a physical issue. if any doctor recognizes the potential catastrophic effects, i cannot see why they’d refuse to assist in this. hoping this can be accomplished quickly, and as smoothly as possible. for both of you. strength and courage to you. timothy hudson understanding the phases and stages of lewy body dementia is crucial for providing appropriate care. what are the early symptoms that caregivers should watch for? in terms of “prodromal” symptoms, those which appear before the condition manifests itself, the three which come to mind first are active dreaming, restless leg syndrome, and loss of sense of smell. but those do not “sentence” a person to later developing lbd, but there are significant correlations with those in earlier life. i hope that helps answer your question. timothy hudson we’re very sorry roxanne. i hope all is well i have been on a journey to solve a never ending list of autonomic system failures for the last year and a half. everything from heart rate, blood pressure, temperature, digestion, and bladder control. for more than 6 months now, i have had to walk with a walker and have falling 10 times. in the last few months my cognitive abilities have greatly declined and started having noticeable dementia and hallucination moments. just a few days ago my neurologist told my wife that he hoped the urinalysis lab came back with a uti to explain the cognitive decline. he prescribed carbidopa levodopa as a way to see if my movement disorder issues would respond to the medication. he told us that if the medication made it better, it meant we were on the right track and if i didn’t have a raging uti, then lbd is where the diagnosis will more than likely land, given all my other symptoms. i got the results back from the lab and it was negative. i was able to walk today, for the first time in over 6 months without my walker. all this news is bitter sweet and i am so sorry to put my wife and loved ones in this position. i know that my god will give me and my los the strength to endure this part of life’s journey. i just turned 47 a month ago and i am lucky to have had 3 grandsons already in my life. my message to others with this disease and their los is to cherish each moment because one day, sooner than you think, the chance for those moments will be gone. god bless your email address will not be published. required fields are marked * comment * name * email * website save my name, email, and website in this browser for the next time i comment. δdocument.getelementbyid( "ak_js_1" ).setattribute( "value", ( new date() ).gettime() ); find reliable, carer specific information on lewy body dementia. get unique perspectives from a caregiver emeritus and active advocate. this website was launched in november, 2015 as a tribute and legacy of care. strength to you!

bats are highly beneficial to people, and the advantages of having them around far outweigh any problems you might have with them. as predators of night flying insects (including mosquitoes!), bats play a role in preserving the natural balance of your property or neighborhood. to learn more about creating habitat for bats and to certify your bat habitat, visit our habitat at home program. although swallows and other bird species consume large numbers of flying insects, they generally feed only in daylight. when night falls, bats take over: a nursing female little brown bat (myotis lucifugus) may consume her body weight in insects each night during the summer. contrary to some widely held views, bats are not blind and do not become entangled in peoples' hair. if a flying bat comes close to your head, it's probably because it is hunting insects that have been attracted by your body heat. less than one bat in 20,000 has rabies, and no washington bats feed on blood. across the united states, bats face many threats that put them at severe risk of population decline. these threats include a devastating disease called white nose syndrome, wind energy, habitat loss, and climate change. creating and protecting habitat for bats where you live can be one small step to help support these important species. report sick, injured, or dead bats online. please also report groups of bats. these reports provide valuable information to track bat populations in washington.if you find a sick or injured bat, contact a wildlife rehabilitator. with few flying insects available to them during winter in washington, bats survive by hibernating, migrating to regions where insects are available, or a combination of these strategies. during hibernation, metabolic activities are greatly reduced a bat's normal body temperature of around 100 degrees f is reduced to just one or two degrees higher than that of the hibernaculum, and their heart rate slows to only one beat every four or five seconds. a hibernating bat can thus survive on only a few grams of stored fat during the five  to six month hibernation period. banding studies indicate that little brown bats will migrate 120 miles between hibernacula and summer roosts, and, if undisturbed, they occupy the same site year after year. they select areas in the hibernaculum where there is high humidity (70 95%), and the temperature is 34 to 41 degrees f. still, there are some species, such as the big brown bat, that can hibernate in relatively exposed situations in buildings where there is considerable fluctuation in temperature. hibernation lasts until april or early may, but in coastal regions bats may arouse in late winter little brown bats have been found feeding in the puget sound region in mid march. it is important not to disturb hibernating bats. if a bat rouses early from hibernation, it must use its fat reserves to increase its body temperature. a single disturbance probably costs a bat as much energy as it would normally expend in two to three weeks hibernating. thus, if disturbed multiple times, hibernating bats may starve to death before spring. it is important not to disturb roosting bats at any time of the year. in the spring, disturbing a maternity colony when flightless young are present may cause young bats to be dropped to their deaths, or abandoned, by panicked females. because some bats hibernate in buildings during the winter months, bat proof a building only when you are sure no bats are hibernating in it. if bats are found hibernating inside after october 15, they should be left alone until early spring (prior to the birthing period in may) after the weather has warmed enough for insects to be out regularly. meanwhile, seal all potential entry points into human living spaces, and develop a plan so the exclusion process can be accomplished effectively in spring. download the bat fact sheet (pdf) fifteen species of bats can be found in washington, from the common little brown bat (myotis lucifugus) to the more rare townsend's big eared bat (corynorhinus townsendii). head to tail, bats range in length from the 2.5 inch long canyon bat (parastrellus hesperus), to the 6 inch long hoary bat (lasiurus cinereus). the hoary bat has a body approximately the size of a house sparrow and a wingspan of 17 inches. the species most often seen flying around human habitat include the little brown bat (myotis lucifugus, fig. 1), yuma myotis (myotis yumanensis), big brown bat (eptesicus fuscus), pallid bat (antrozous pallidus), and california myotis (myotis californicus). the safest way to view and enjoy bats is to watch them in action. bats are fascinating flyers, zigging and zagging about as they chase and eat insects. little brown bats and yuma bats prefer to hunt over water. big brown bats are often seen hunting along the margins of wooded areas, or silhouetted against the lighter sky as they twist and turn high above the tree canopy. it's also fun to watch bats drink, which they usually do first thing after leaving their day roost. they scoop up mouthfuls of water with their lower jaws as they fly over lakes, streams, ponds, or water troughs. most bats do not come out to eat or drink in heavy rain, inclement weather, and sustained freezing temperatures. choose a warm summer evening and a place where you can sit and view the place where bats will emerge from a roost site or have been spotted in the air. when waiting for bats to emerge from a roost site, such as an attic or bat house, remain still and quiet, and listen for the squeaks or clicks that many species make before emerging. some species of bats begin their night flights 20 to 30 minutes before dark the common big brown bat may be out foraging earlier. the rare canyon bat from the arid regions of washington emerges before the sun goes down, and has been seen foraging with violet green swallows. other species don't emerge until after dark. the best places to see bats in flight are where night flying insects abound, such as next to a stream, lake, or pond, over a meadow or large lawn, along a forest edge, or around bright streetlights or porch lights. with the aid of an inexpensive, commercial bat detector, listen for the echolocation calls bats make when navigating and locating prey. interested in photographing bats? the white nose syndrome response team has put together guidance for effective bat photography. while the guidance is from a communications and outreach perspective, there are many helpful tips for everyone to safely and effectively photograph bats. some bat species prefer man made structures, such as buildings and bat houses, to their natural roosts, whereas others are forced to roost in man made structures when natural roosts, such as caves and hollow trees, are destroyed. two bat species that frequently use bat houses are the little brown bat and the big brown bat. a well designed, well constructed, and properly located and maintained bat house may be used by these and other bat species if they live in or pass through your general area. bat houses can be painted with exterior grade, water based paint or stain. in cool places, painting houses a dark color can absorb more heat, but in warmer places where bat houses receive full sun, a lighter shade can prevent overheating. place bat houses where they will receive full sun for at least 6 to 10 hours. bat colonies need warm places to raise their young, which decreases adult metabolic needs while roosting and allows for ideal conditions for pup (baby bat) growth. that being said, bat boxes can overheat in extreme conditions and overheating can lead to death. be mindful of the placement of your bat houses, and use sun shades over them when necessary. build or buy a bat house that is at least 2 feet tall and 14 or more inches wide. bigger is better. the house should have multiple chambers that are ¾ to 1 inch wide a variety of sizes is good to provide for the needs of different species; however, using ¾ inch wide spacing can discourage the use of unwanted guests such as wasps. there also should be a roughened landing platform that extends 3 to 6 inches below the house. the houses should be caulked during construction and preferably be screwed together. the idea is to create a tight microclimate inside the house capable of trapping both the heat captured during the day and the warmth generated by the bats. air vents should be installed to ensure the bats do not overheat. place the house in full sun, preferably on its own pole; the next best location is on the side of a building in full sun. don't put it on a tree, as it will be in too much shade and too close to perch sites used by predators such as hawks and owls. keep the area around the entrance clear of obstructions for at least 20 feet. bat houses should be inspected regularly to ensure they are still in good condition. this can include general maintenance such as re caulking of seams and cleaning to remove uninvited guests like wasps. don't worry that adding a bat house to your property will encourage bats to move into your attic or wall space. if bats liked your attic or wall spaces, they would probably already be living there. bat houses can provide protected habitats for bats and will be used either permanently in the summers or intermittently throughout the active season. for an in depth guide on bats and bat houses in our region, download building homes of bats: a guide for bat houses in british columbia (pdf) (applies across washington) from the community bat programs of bc. for further information on bat box designs and installation tips: for some people bats don't present a problem. for others, bats can be a worry, especially when they become unwanted guests in an attic, inside a wall of a home, or inside the home itself. unlike rodents, bats only have small teeth for eating insects, so they do not gnaw holes in walls, shred material for nests, chew electrical wiring, or cause structural damage to buildings. damage caused by bats is usually minimal, but they can be noisy and alarming, and the smell of bats and their droppings can be offensive. it is possible to learn to coexist with bats, and to benefit from their presence.​ in spring and fall, migrating bats may temporarily roost outside on window screens, fence posts, piles of lumber, and other unlikely places. if a bat is seen roosting outside during daylight hours, leave it alone. it will probably be gone the following morning. if a bat flies into your home it's probably a juvenile learning to fly, a solitary male following prey, or an adult that has been excluded from its roost . bats often enter through an open door or window, or by coming down a chimney into an unused fireplace. at nightfall (if you are sure the bat has not been in contact with humans or pets), turn off any lights in the room where the bat is confined, open all doors and windows that lead outside, and stand in the corner. this allows you to watch the bat while staying out of its way. (if you must move around the room, stay as near to the wall as possible.) be prepared to watch the bat for up to 20 minutes. normally, the bat will fly around the room to orient itself, and then leave. if the bat seems to have disappeared but you didn't see it leave, it may be perched somewhere, such as behind a curtain, in hanging clothes, or in a houseplant. the bat will generally choose a high place to roost. moving these things around with a broomstick may arouse the bat. if the bat doesn't leave, it can be caught and released outdoors away from people and pets. approach the bat slowly and place a container (small box, large glass, tupperware container, coffee can) over it. next, gently slide a piece of cereal box paper or cardboard underneath the bat (be gentle bats are fragile animals). using the paper as a cover, take the bat outside. the ideal release procedure is to place the container against a tree, slowly slide the paper away, and then remove the container. releasing the bat against a tree allows the bat to rest safe from potential predators like the neighbor's cat. watch this video from idaho fish and game for tips on how to safely remove a bat from your home. note: state wildlife offices do not provide bat removal services, but you can find the names of individuals or companies that do under nuisance wildlife control operators or you can look up "animal control," "wildlife control," or "pest control" in you phone directory. the best way to get rid of bats is also the safest both for the bats and the humans involved. this is to humanely exclude them. however, because old buildings offer many points of entry it may be impossible to completely exclude bats from them, or from those with shake or cedar shingle roofs that have no underlayment. a wildlife damage control company experienced in excluding bats can be hired, or you can do the exclusion work yourself. in attics and areas where large numbers of bats have been roosting for years, it is safer for you to hire a professional to do the work, including the cleanup of accumulated droppings. note: never trap flightless young or adult bats inside a structure; this is needlessly cruel to the bats inside and can create a serious odor problem. trapping and relocating bats is not recommended. traps can be fatal to bats if left unattended and can quickly become overcrowded. in addition, bats have excellent homing instincts and, when released, they may simply return to the capture area. yuma myotis bats released 240 miles from their roost have found their way back. common entry points used by bats: prior to excluding bats, consider partitioning bats off from the area where they are in conflict with humans, and allowing them to roost elsewhere in the structure. an effective partition can be made from construction grade plastic sheeting and wooden battens. another consideration is to provide an alternate roost site, such as a properly designed and installed bat house mounted close to one of their exits. install the bat house before excluding the bats as described below. the following will work to exclude bats from most structures: option a   build bats out: from mid october to mid march, when bats should still be hibernating, or after you have made sure no bats are roosting in the attic or other area, seal all potential entry holes (fig. 5). entering the attic during the day may reveal light shining through otherwise unnoticed cracks and holes. insert pieces of fiberglass insulation or bits of stick in these holes to mark them for repair from the outside. the advantage of caulk over foam is that it comes in a variety of colors and it is easier to apply. before purchasing, check the label to make sure the caulk can be painted. insulation blown into wall spaces may be an effective barrier, but it must be done when bats are absent to avoid trapping them in the fill. if bats are present, holes can also be blocked over a period of days early in the evening after the bats have left the structure to feed. do this only from mid august to mid october (after the young bats have learned to fly and before cold weather arrives). another window of opportunity occurs in early spring, before the birthing period in may. for several days, bat counts should be made as holes are closed, leaving the main exit open. on the night of the final count after the bats have left, the main hole should be plugged to prevent their reentry (fig. 6). the following evening, the plugging should be removed to allow any remaining bats to leave before the exit is sealed. option b   harassment: if bats are present and have to be excluded, persuade them to move to one of their alternate roost sites by creating an undesirable atmosphere. the time to do this is from mid august to mid october, after the young bats have learned to fly and before cold weather arrives. another window of opportunity occurs in early spring, before the birthing period in may. bats don't like to roost under bright, windy, or noisy conditions. therefore, locate the area where bats are roosting and light the area with a bright light, such as a mechanic's drop light or trouble light, located away from burnable objects. (use a fluorescent light to save on electricity and keep the heat level down.) in addition, aim a fan and a loud radio at the bats. begin the harassment process shortly before dark and keep it in place day and night. because bats may move to a dark, protected area, you may need to move the lights and other equipment, or install them in various areas. putting up sheets of plastic to separate the bats from the rest of the area can be effective, but make sure you don't block the bats' exit or exits. commercially available ultrasonic devices may be effective if they are placed in a small, confined area with the roosting bats. since bats can hear high frequency sounds, these devices, inaudible to humans, supposedly bombard the bat's range with jackhammer like noise. naphthalene flakes or mothballs should not be used to exclude bats. these contain chemicals that can be toxic to humans and other life forms; poisoned bats may fall to the ground where they die slowly and are more likely to come into contact with children or pets. option c   install exclusion devices: again, from mid august to mid october (after the young bats have learned to fly and before cold weather arrives), or in early spring (before the birthing period in may), identify the exit(s) bats are using. have friends or family members stationed at the corners of the structure after sunset on a warm calm night. they need to be far enough away to see as much of the structure as possible without having to turn their heads; it takes only a second for a bat to exit and take flight. note which side of the structure bats are seen from. on subsequent nights, focus your attention there to locate the exit hole. remember this hole can be as small as ½ inch. bats often defecate when exiting and reentering a building, so look closely for rice sized black droppings clinging to the side of the structure. if droppings are observed, the exit hole will be directly above it. (to make sure droppings are new, remove the existing droppings or lay down newspaper over them to see if more droppings appear.) bat body oils may also discolor a well used opening. seal all entry holes but one using the methods described in option a. exclude bats by covering the one existing entry hole with a device that allows bats to exit the structure, but prevents them from reentering. install the exclusion devices during the day and leave them in place for five to seven days (longer during particularly cool or rainy weather). when bats are using multiple openings to exit and enter, exclusion devices should be placed on each opening, unless you can be sure that all roosting areas used by the bats are connected. if all the roosting areas are connected, all but one or two exit holes can be sealed as described below. place exclusion devices over the one or two remaining exit holes. however, if the colony contains a hundred bats or more, which is common, leaving only one exit point can create a "bat log jam." in these cases, some bats might start looking for alternative ways out of the roost area, leading to bats finding their way into human occupied areas. so, always watch to make sure bats are able to exit freely. if they do not appear to be exiting, or appear to be having trouble doing so, open additional exits. if the exclusion process was successful, immediately seal up the exits to prevent bats from reentering. if necessary, install a chimney cover, available from home improvement centers, or make your own. bats temporarily roost above porches or under overhangs at night to eat large prey, digest, rest, and socialize. in such cases, they may frighten humans, or their droppings may accumulate. nontoxic aerosol sprays, designed to repel dogs and cats, can prevent bats from night roosting in these areas. the spray is applied by day when bats are not present, and is reported to be effective for several months. however, aerosol repellents are not an adequate substitute for excluding bats that are using the area as a day roost, and should never be applied when bats are in a roost. mylar balloons or strips of aluminum foil hung from the porch ceiling and allowed to move in the breeze may also discourage bats from roosting in that area. large accumulations of bat droppings may harbor histoplasmosis fungi spores, which when inhaled can result in a lung infection referred to as "histo." no histo cases have been reported in washington, but precautions should be followed when cleaning or removing large accumulations of bat droppings. call your local health department for recommendations. people are more often concerned about bats because of rabies, a virus that affects the nervous system of all mammals, including humans. rabies is spread when the saliva of an infected animal enters another body through a bite or scratch, or makes contact with their eyes, nose, mouth, or a break in the skin. there is little risk of contracting rabies from a bat as long as you exercise caution. people cannot get rabies from touching bat droppings, blood or urine, or fur. five to 10% of sick, injured, or dead bats tested by the washington state department of health (wdh) have rabies; however, wdh estimates that probably less than 1% of the native wild bat population has rabies. if a bat does contract rabies, it is unlikely to be a threat to humans as long as simple precautions are followed. most bats infected with rabies become paralyzed and fall to the ground. (note: young bats also fall to the ground when learning to fly. they may also have hit a window and been stunned, or simply be cold and unable to fly.) this means a person may contract rabies from a bat only if they pick up a sick bat, which then bites the person in self defense. thus, if you do not handle bats, your odds of contracting rabies are extremely small. if you think you have been bitten, scratched, or exposed to rabies via a bat: people usually know when a bat has bitten them. however, because bats have small teeth and claws, the marks may be difficult to see. contact your local health department or your doctor in the following situations, even in the absence of an obvious bite or scratch. in such cases, the bat should be captured for testing: once dogs presented the major domestic risk of rabies, but now cats do. routine rabies vaccination is not as widely practiced with our domestic cats as with dogs. yet cats often play or hunt in natural areas. all cats should be vaccinated for rabies, even indoor cats. the national association of state public health veterinarians publishes the compendium of animal rabies control yearly. these guidelines are clear: an unvaccinated animal that comes in contact with a potentially rabid animal (bats in washington) that cannot be tested should (1) be euthanized; or (2) be held in strict quarantine for six months. few people are willing to do either. the message for everyone is: vaccinate your pets! dogs require vaccination against several diseases. puppies begin their series of vaccinations at six to eight weeks of age, and annual boosters are necessary to maintain immunity. many washington bats are currently being studied and may be recommended for protection under the endangered species act. for current legal status and other information, contact your local wildlife office. all species of bats are classified as protected wildlife and cannot be hunted, trapped, or killed (wac 220 200 100). the department of fish and wildlife makes exceptions for bats found in or immediately adjacent to a dwelling or other occupied building. in such cases, these animals may legally be removed and no permit is necessary (wac 220 200 100). across the united states, bats face many threats that put them at severe risk of population decline. these threats include a devastating disease called white nose syndrome, wind energy, habitat loss, and climate change. to learn more about the threats bats face from climate change, habitat loss, persecution, and wind turbines, visit bat conservation internationals page. white nose syndrome has killed millions of bats in eastern north america since 2006. washington's first case of the disease was confirmed in march 2016 near north bend in king county. white nose syndrome is a disease caused by the fungus pseudogymnoascus destructans. the disease is estimated to have killed millions of bats in eastern north america since 2006 and can kill up to 100% of bats in a colony during hibernation. watch the video about white nose syndrome, a fungal disease that is often fatal to hibernating bats. this disease does not affect humans, livestock, or other wildlife. visit the white nose syndrome webpage for more information. download the white nose syndrome fact sheet (pdf) domestic cats are talented predators of bats. because of their efficient hunting tactics, house cats kill millions of birds, reptiles, amphibians, and small mammals which impacts local wildlife populations dramatically. additionally, cat feces can spread disease to wildlife. instead of letting your cats outside, build them a contained outdoor catio or provide enrichment inside. keeping cats indoors keeps both your cats and local wildlife safer. artificial light at night (alan) is the light produced by our streetlights, billboards, buildings and more. these artificial light sources disrupt the natural patterns of wildlife, especially in our cities and towns. it can effect when wildlife are active, where they find food sources, and how they hunt. keeping outdoor lights off at night when not in use, can help wildlife use their habitats more naturally. if you can't turn lights off, consider using a yellow or red light, or covering lights so they point at the ground without shining up into the skies as much. with human development, bat habitat is disappearing everyday and you can help change this! create and protect bat habitat where you live, work, and play. food: while bat diets vary greatly around the world, all washington bats eat insects. plant a bat garden! you can support their food supply by planting native plants that support night flying insects. flowers with white and light colored blooms, or flowers who produce fragrance attract insects that bats eat such as moths, beetles, flies, gnats, mosquitos, and more. water: keep existing water sources accessible to bats means keeping invasive plants from filling ponds and streams with vegetation that would limit a bat’s ability to reach the surface. turn off artificial lights at night that shine over water, disrupting insect activity and bat’s echolocation. you can also add a water source for bats! bats drink “on the wing” and rarely land to drink. this means they need large freshwater sources that are free of pollution to give them the space to swoop to reach water. water troughs, filled high and refreshed often to keep them clean, and ponds can provide water for bats. shelter: bats use a variety of shelters (called roosts) throughout the year. they use a variety of habitats to roost such as caves, mines, bridges, bat houses, crevices and cavities in rocks and trees as well as bark, branches, and foliage. you can help by protecting the trees and natural bat habitat around you. bat houses are a great way to help replace bat habitat lost to human development. they can provide shelter (called roosts) for maternity colonies, as well as shelter for foraging, migrating, and dispersing bats. additionally, bat houses provide us with an opportunity to observe bats and the chance to educate friends on how they can support their neighborhood bats. bats rely on water sources for drinking and for the insects that are attracted to the water. human caused pollution can damage water sources, making bats sick and insects scarce. dispose of chemicals at hazardous waste disposal sites instead of in drains, garbage, or by dumping. these avenues lead to chemicals leaching into soil and makings its way to natural water sources. reduce or eliminate your use of toxic pesticides. using pesticides not only affects insects but can also harm predators like bats and birds who eat insects as a main staple of their diets. avoiding harmful pesticides, even switching to non toxic pesticide alternatives, supports native insects and keeps bats healthy. report sick, injured, or dead bats online. please also report groups of bats. these reports provide valuable information to track bat populations in washington. bats are one of the most beneficial animals to humans, but they may be facing yet another threat in addition to white nose syndrome. at this time, the potential transmission from humans with the covid 19 virus to north american bats remains unknown. researchers are investigating the susceptibility of north american bats to the covid 19 virus. it’s important to remember that people cannot get covid 19 from bats. to learn more about bats and coronaviruses, visit bat conservation international's, bats and covid 19 updates webpage. ingles, l. g. mammals of the pacific states. stanford, ca: stanford university press, 1965. link, russell. landscaping for wildlife in the pacific northwest. seattle: university of washington press and the washington department of fish and wildlife, 1999. maser, chris. mammals of the pacific northwest: from the coast to the high cascades. corvalis: oregon state university press, 1998. nagorsen, david w., and mark r. brigham. bats of british columbia. vancouver, bc: university of british columbia press, 1993. tuttle, merlin d., and donna l. hensley. the bat house builder's book. austin, tx: bat conservation international, 1995; university of texas press, 2001. request translations or interpretation
supported by on location the small house in washington was designed to sit lightly on the land: it touches the ground in only six places, and they didn’t cut down a single tree. by tim mckeough a home should be a place where you can welcome your extended family   at least that’s what leah martin and vikram prakash thought. but while they loved entertaining at the house they shared with their three children, the experience wasn’t quite what they had in mind. “what happens is that when everybody comes to our seattle home, our lives are so hectic we don’t really get to spend time together in the way we would really love to,” ms. martin said. “we had been thinking for a long time that it would be so nice to find a place where we could all truly decompress as a family.” the obvious solution, they decided, was to build a second home in a rural spot outside the city. and because they are both architects   ms. martin, 53, is a principal of the architecture firm allied8; mr. prakash, 60, is a professor of architecture at the university of washington   they relished the idea of designing their own home.

 houses we love: every day we feature a remarkable space submitted by our community of architects, designers, builders, and homeowners. have one to share? post it here. location: eastsound, washington architect: allied8 / @allied8architects footprint: 1,386 square feet builder: ca reed construction structural engineer: dibble engineers archeologist: full scope nw interior design: color & design studio cabinetry design: bellmont cabinet co. geotech: geotest photographer: rafael soldi / @rafaelsoldiphotography from the architect: "there’s a beautiful design story here. a modern linear home, cantilevered off a cliff exposed to stunning views to the north and south. the aging kebony on the exterior blends in with the bark of the trees on site, and the bright interior is open, monochromatic, and modern. the suspended loft is tall enough to stand up straight at 6 feet and offers flexibility as a play, sleep, or work space. it was designed by leah martin, co founder of allied8 architects, to make the most of the site, the views, and the light. "on a site full of moss, mature forest, old growth trees and bedrock, the preciousness of the land and the surrounding forest informed the shape of the house and the surgical foundation system; using concrete in this home made little sense to the designers. instead, the home connects to the earth in only six locations, sitting on a steel moment frame. touching the earth only where it must, to exist. nature carries on around this home in fact, the family came home one afternoon to a full grown buck resting in the shade of the cantilever. "at least 8% of global emissions caused by humans come from the cement industry alone; that means it’s one of the first building materials to eliminate in order to steeply bring a project's carbon footprint down.