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And The Beat Goes On.... First of all, I want to apologize for my lack of attentiveness. It's okay if you roll your eyes. I've done the same thing when people say that. The truth is that my energy is at about 30% and very little of that has been expended on things I care about - such as reading blogs, reading books or even leisurely watching TV. While all the things I've been doing are necessary, they're also challenging most of my personal limitations, physically and mentally.

Not to say I won't be okay because I will. In comparison to my housemate's troubles, I have little room to complain - if any at all.

She is still in the nursing facility. The Cliff Notes are that she has been declared incompetent and is no longer able to make her own decisions. Her family has been brought in and those dynamics are coming into play. Her sister from Southern California has decided I am the spawn of the devil since I have asked to be paid for my services and has removed me from all ability to help in any substantial ways. I am not allowed to have information about her case from the nursing staff. If she could ban me from the premises, she probably would. I've gone from Golden Girl to goat in two days flat. Since she has Power of Attorney, I can't even make a suggestion. The staff can't even take information from me, let alone give it. The fact that I have had my boots on the ground for the past four years holds no significance. The Sister From Hell and I no longer speak and have no reason to do so in the future.

Her son is here, also from SoCal, and she has cut him off as well. The reasons for this are basically a power struggle. He also can't make any decisions. Luckily, after sweet-talking her, he can get information which he gives me and we discuss possibilities among ourselves. The discussions he has with his siblings are none of my business and I don't really care - but someone in the family needs to see all of these changes in context. If I can give that to him, that's good enough.

The sister's opinion is that I have no right to be paid because I am a "friend". I guess a friend, in her mind, should sacrifice his or her entire existence to care for her sister with no expectation of reciprocity. Of course this makes me angry and I have questioned my ethics on this every way there is. I have talked with trusted friends and even my spiritual advisor to think this through. I have determined that my asking for financial compensation is ethically clear.

I don't see any other "friends" of hers stepping up to the plate. I am there with her at the minimum, three hours a day. I go with her to physical therapy. I have lunch with her. Since she has little sense of time, she gets lonely very quickly and needs the visitors she has. Her two sons and her daughter visit her daily as well. They all have full lives and this is taxing them as well. We're doing the best we can. My housemate trusts me and knows I will always tell her the truth. That's not going to change. The rest of them have their own unique relationship with her and deal with things the way they think is best.

So that's my m-bitch for the day.

As for her, we got the report from the neurologist and he diagnosed early stage Alzheimers. Needless to say, she is not going to be able to come home without full-time caretaking which the family will have to work out and likely pay for. The insurance morass in this saga is something I won't even go into at this point but I'll say there's never been a stronger argument in my mind for national health care. This isn't a time to have to be worried about money. It sucks for her family, none of whom are independently wealthy.

When her son and I told her the results of the test, of course she began to cry. It's a hard pill to swallow and she's not someone who reads a lot or even talks about these things. She's scared to death, rightfully so. We've had a lot of talks about doors closing and her choice to open new ones. We've had talks about accepting limitations and creating a life within them. As a disabled person, I've had to do that. Everyone does. Eventually. As the saying goes, none of us get out of this life alive.

Seriously though, putting myself in her position, I can only imagine the hell she is experiencing in her quiet moments. I wish her grace, peace and acceptance - the kind that only something divine can offer her. We human beings are so limited in our wisdom and our ability to make horrific things right - or to even make them kind of okay. Sometimes life just sucks.

Thanks to all of you for hanging in with me, even though I am so notably unresponsive right now.


Posted by thailandchani at 11:13 AM Labels: Alzheimers, early stage alzheimers, my life on a half shell, recovery 
I don't know what else to say except to wish you well.

February 5, 2010 at 3:02 PM 

Family dynamics are often complicated and crisis of any kind brings out the best and the worst in a family. May I ask, and you owe me NO explanation, but I was wondering when you say "friend" are you and she Life's-partners'? I am trying to understand your situation better, is all.

I hope you all find peace in this very challenging time.


February 5, 2010 at 3:06 PM 
So very sorry to hear your housemate is going through this, and that you are being shut out by the family. It is all very hard and you have my sympathies.

February 5, 2010 at 3:26 PM 
I agree with all the posters above me and simply send you love. This all sounds extremely difficult, and depression-inducing. Be good to you.

February 5, 2010 at 5:11 PM 
You are still in a very tough situation and are handling it well. I have found myself relying on reports of my mom's family to insure that in our phone conversations, she is not hiding anything. Fortunately, she is mentally very sharp, but is frail and she has many very close relatives around her who I can rely on.
On the side political note, it is when we see what the need actually is, we can realize what a mess the current insurance situation is.
You are doing a very difficult thing helping out.
Do not know if I could do the same.

February 5, 2010 at 6:25 PM 
I learned while working for an in home care company that the client is usually the easy one to deal with, it is the family members who make it difficult. The old hostilities and power issues seep into the mix and they are not looking out for her best interest, but instead their own life issues.

I wish you peace and take care of you.

February 5, 2010 at 7:47 PM 
Anvil, I know what you mean. There's not much to be said at this point. It just drags on and on.


Gail, no, we are not life partners. We're just friends. Believe me, if we were life partners, I'd already have a lawyer. And I would have been in Sister's face already. When it comes to a situation like that, I don't bother taking prisoners.


Mauigirl, thank you. It could be much, much worse and I know that. I could be dealing with AD.. so I'm reluctant to gripe and groan too much.


Billie, yeah... it's been hard and I've definitely shed a few tears. It would be easy to run away but I think my soul needs this. It will make me a better person to stick it out.


Whitemist, her son does keep me well informed and I also draw my own conclusions when I visit. As for the political end, having to be concerned about money is just hellish for her family - and I think it's downright inhumane for people in that situation to have to be more concerned about insurance than health-related issues. It makes me sick.


Leann, it's strange, isn't it? It's strange that families can't put all that sh** aside and support the person who is sick. We're a weird species.


February 5, 2010 at 8:36 PM 
We are indeed a weird species, Chani. It's a lot to go through...so much is happening so fast...take good care of yourself as you go through it all. I am hoping for the best possible outcome for your housemate, but alas, I wonder what that will be with all of the family drama. Peace be with you, O xo

February 5, 2010 at 8:41 PM Sherry Peyton said...

So sorry to hear your still going through such difficulties Chani..My thoughts are with you and my prayers. Blessings dear.

February 6, 2010 at 9:27 AM 
Olivia, the family drama is what's stressing everyone out. It's becoming two camps - and that's not a good thing. D herself would be appalled!


Thanks, Sherry. I appreciate it.


February 6, 2010 at 1:44 PM 
Oh dear. I was hopeful the family would be happy to compensate you for your work and make a bad situation into as much of a win/win as it could be. I'm sorry that's not happening. Of course they'll end up having to pay someone and why not someone she is comfortable with and knows. I don't get it, Chani.

February 6, 2010 at 2:46 PM 

Thankfully for D and her children, you have a way of deciding what is right and doing it.

That's a lucky family and to D's sister - shame on her.

Selfishly, I do miss you.


February 6, 2010 at 8:58 PM 
Please nurture yourself, dear girl. I am keeping you in my thoughts and prayers as this goes on.

One foot in front of the other, doing the next right thing. It will all work out...


February 6, 2010 at 11:04 PM 
Angela, The Sister From Hell believes I should be willing to do it free because I am D's friend. I did get paid this month but I'm not sure what will happen next month.

I think there are just some people in the world who believe taking advantage of others is acceptable behavior. She's one of them. I'm not.


Deborah, I'll be back soon. Things are beginning to slow down a bit now - so hopefully I'll be freed up a bit more in the next few weeks. I'll be on the call tonight.


Annie, I agree. That's how it boils down. When I walk away from all of this, I want to know I gave what I could - within reason.


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April 4, 2010 at 7:59 PM