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" In my books and speeches, I always tell women to look forward to the passage into midlife. Having checked off most &amp;quot;shoulds,&amp;quot; women generally feel a new sense of mastery in their late 40s and 50s. You&amp;#039;ve done your best to please your parents, your boss and your mate, and to raise your kids. Now it&amp;#039;s time for you.   Then you get The Call. Mine came in a beauty salon. I was getting ready for a concert that night with my husband, Clay Felker, a magazine editor and publisher, and founder of New York magazine.   &amp;quot;It&amp;#039;s not benign.&amp;quot;   &amp;quot;Not benign?&amp;quot; I repeated dumbly.   &amp;quot;The cyst on Mr. Felker&amp;#039;s neck, it&amp;#039;s not benign.&amp;quot;   The caller was my husband&amp;#039;s surgeon. I hadn&amp;#039;t heard from him in two years.   &amp;quot;But two years ago when you did the biopsy, you told us\u2014&amp;quot;   &amp;quot;The pathologist recut the old biopsy slides. It&amp;#039;s cancer.&amp;quot;   The cyst on Clay&amp;#039;s neck had returned, which prompted the pathologist to take a sample from a different area of the original biopsy. And it was cancer. What to do first? We did the best thing we could have done\u2014we went ahead with our plans for the evening. At the concert, we let music transport us from morbid speculation. We assured each other that we would get through this dark passage together.   After that, the weeks flew by as I tracked down doctors, compared hospitals, listened to cautionary tales from friends, and scavenged the Internet for alternatives. Dizzy from conflicting opinions, I didn&amp;#039;t know whom to trust. It began to dawn on me that my life, too, had changed radically. I had a new role: Caregiver.   &amp;quot;The Call&amp;quot; throws most of us into shock and denial and a frenzy of learning how to take charge. We have no idea how to navigate our way through the patchwork of care alternatives, insurance regulations, Medicare rules or the sometimes contradictory advice from different doctors. And we have no concept of how long it will go on, how much it will cost or how we will pay for it.   I never could have imagined that I was about to spend much of the next 17 years as a caregiver, fighting for the life of a man who refused to give up through four separate battles with cancer. And I had no idea that 65 million other American adults were stumbling along the same unpredictable path\u2014trying to take care of their parents, partner or other relatives, or supporting a loved one through a chronic illness. The prevalence of this mostly ignored passage of life is staggering: In almost one-third of American households someone is serving as an unpaid family caregiver.   I was honored to be named Ambassador of Caregiving for AARP in 2008 and traveled the country interviewing hundreds of family caregivers and the healthcare professionals who work with them. This is not a passage that affects only seniors. From AARP I learned that the average family caregiver in the United States is a 50-year-old woman who has a paid job (more than half work full-time) and spends 20 hours a week caring for an adult who used to be independent. Nearly half of family caregivers are actually on duty 40 or more hours a week and about one-third still have children or grandchildren under the age of 18 living with them.   The caregiving crisis is not something you can handle alone. You need to be prepared with specific strategies. Here&amp;#039;s what I learned the hard way about how to get through the first stage of caregiving, which I call &amp;quot;Shock and Mobilization.&amp;quot;   Recognize yourself as a caregiver. The key to this first phase of the battle is to put yourself\u2014and your loved one\u2014in a &amp;quot;take charge&amp;quot; mindset. This means being prepared to help your loved one navigate the illness on all fronts\u2014the medical choices and the unruly emotions. If the patient is frozen in fear or denial, use humor as often as possible to guide him gently through the mobilization process. You will both need to take an active role, expressing your feelings and opinions throughout. Connect with others who have battled the same illness. This will give both of you encouragement and camaraderie, and help you learn what tools and resources you&amp;#039;ll need to get prepared. Two great places for caregivers to start are the National Alliance for Caregiving, a nonprofit coalition of national organizations all focusing on the issues of family caregiving, and the Well Spouse Association, a nonprofit support group for married people with diverse caregiving profiles, from newcomers to 30-year veterans.   If your loved one procrastinates on this front, start making calls yourself. Men are especially reluctant to reveal a physical weakness to anyone. But as the late filmmaker Frank Perry (who also battled cancer) once advised Clay, &amp;quot;Take charge, man, because what you find is, the only person who will battle for your life is you.&amp;quot; Photo: Gemma Comas      Interview doctors. Speak up! You have every right to see several different doctors\u2014and ask them lots of questions\u2014before deciding on a treatment plan. This is where we made our first mistake. We went back to the original surgeon who had done the earlier biopsy and missed the cancer, and when he bluntly stated, &amp;quot;My recommendation: radical neck surgery,&amp;quot; we were in such shock that we didn&amp;#039;t ask questions. I was glad I had brought a tape recorder with us, because I wouldn&amp;#039;t have remembered half of what the doctor said. At home, I was astonished to learn that my husband had totally misunderstood what the doctor was telling us. It was only when I replayed the tape for Clay that he took in the seriousness of his condition. That put us on the same page. I learned from this that it&amp;#039;s critical to take notes and record any important consultation. Most good doctors welcome it so they won&amp;#039;t have to repeat themselves. Weeks later, when you&amp;#039;re ready to decide on a treatment plan, these notes will be pure gold.   Also, don&amp;#039;t be afraid to ask for a follow-up consultation with a doctor you&amp;#039;re leaning toward. My husband&amp;#039;s oncologist recommended to us another head and neck surgeon, Dr. John Conley. I called a local organization to check his qualifications. (You can also call your state medical board. For contact information, visit DocBoard.org.) We found out that Dr. Conley had learned his trade as a battle surgeon in World War II\u2014 good training. He had pioneered nerve-sparing techniques for reconstructing the head and neck during radical surgery. We liked Dr. Conley very much, but he was on the brink of turning 80. Could we count on an octogenarian to hold steady through a long and meticulous operation? We went for a followup consultation and asked, How many of these surgeries do you perform in a week? Finding out how much experience a medical professional has in doing a particular procedure and/or treatment is a crucial piece of information you need to make a decision. Studies have shown that the more continuous the experience, the greater the success rates. When Dr. Conley told us that he did three surgeries a week, each of which lasted three to five hours, we knew we were in excellent hands.   Look for a medical quarterback.  When you&amp;#039;re interviewing doctors, look for one who is willing to be a partner with you and your loved one. One doctor we saw was eager to enlist my husband in his experimental protocol, using an aggressive chemotherapy. I looked up the side effects on Medline and learned it caused severe hearing loss in many patients. We immediately knew that doctor didn&amp;#039;t have Clay&amp;#039;s best interests at heart. When we went on doctor interviews, I learned to notice whether the doctor took a thorough history\u2014not just rote facts about allergies and medications. Was he also concerned with the patient&amp;#039;s mental and emotional health? Ideally, you&amp;#039;d like a doctor who asks what the patient lives for and levels with you both on how various treatments would affect the patient&amp;#039;s quality of life.   Here are three basic questions to ask that will help you determine if the doctor is willing to be a partner:   Will you be the one to coordinate the care plan?  If not, who will? If the doctor who diagnosed your loved one waves off this responsibility, you need to look for another doctor. A medical quarterback needs to help you build the team and keep all the players advised of test results and decisions.   Will you help us decide among different treatment options?  When the patient, caregiver and medical quarterback collaborate on a decision, it becomes a partnership.   Will you help address pain and other side effects of treatment?  Aftercare at home will require some readjustments that the doctor should talk you through. You as the caregiver will know more about the patient&amp;#039;s reactions to treatment than any doctor, and a medical quarterback will welcome your feedback.      Get research help.  Turning to the Internet for more information is a natural and proactive step when you&amp;#039;ve been diagnosed with any illness. But doing background research can be overwhelming, and working the Internet blindly is scary. Discuss anything you find online with the doctor and consult the website of the specific disease organization before letting what you read freak you out. Better yet, find a professional medical researcher. They go by various names: patient navigator, patient advocate, healthcare advocate, medical researcher, cancer guide. A professional guide will scour the latest studies on the disorder in question and can cull and tailor the research to match the patient&amp;#039;s age, sex, medical history and biology. Not only will this save you time and stress, but these researchers can also suggest complementary therapies or clinical trials.   The best of these professional guides will research treatments, put you in touch with leading doctors and medical centers, and help you through the maze of insurance coverage. To find a researcher, you can contact HealthCare Advocates, Inc., which helps people with any medical condition access the best doctors and treatments. Illustration: Jenny Bowers   Check out hospitals.  Most people just go to the hospital that their doctor is affiliated with, but many hospitals specialize in particular diseases. Before you decide on a doctor, ask which hospital(s) he or she is affiliated with. Check out the frequency with which the hospital treats your loved one&amp;#039;s condition, and the success rate. (If the doctor has privileges at multiple hospitals, check this information for all of them and request to be treated at the one with the best statistics.) Rankings and ratings on hospitals are made available by websites like Hospital Compare, a free service from the U.S. Department of Health and Human Services that uses the results of a national survey of patients to compare hospitals. The Leapfrog Group (202- 292-6713) is a nonprofit watchdog organization started by employers who wanted to make sure the healthcare they bought for their employees met certain safety and quality standards. They also rate hospitals&amp;#039; performance on patient safety and high-risk procedures.      Prepare for treatment without stress. Anyone facing treatment for a serious illness\u2014 whether it&amp;#039;s surgery, chemotherapy, radiation or taking a drug long-term that has side effects\u2014needs help in dealing with the anxiety. The longer we remain highly anxious, the harder it becomes to pull out of a negative downward spiral. And that spiral interferes with healing. Doctors&amp;#039; usual way of treating anxiety is with drugs, but you can help your loved one prepare by helping him learn meditation and talking him through calming visualizations, both of which helped my husband.   Guided imagery and self-hypnosis are proven methods for reducing anxiety before, during and after treatment. A Blue Shield of California study showed that when patients who were having surgery practiced guided imagery, they had shorter hospital stays and required less medication. In fact, the study showed an average savings of $2,000 per procedure.   Clay learned the simple steps of self-hypnosis. And his surgeon, being an enthusiast of complementary mind-body medicine, even hung the Walkman with Clay&amp;#039;s meditation tape on his chart so it could go with him into the OR.   Giving the body instructions on how to respond to the treatment can also help with healing. Make a tape with the patient&amp;#039;s own voice saying: The doctor and I are working together to get me better. I invite the doctor to cut out the cancer and throw it away. I will stay calm and relaxed.  The more often this is practiced, the easier it will become to slip into a hypnotic state. Anxiety will lessen.   In the immediate postoperative and/or post-treatment hours, ask the recovery room nurse to play the tape for the patient to give the body another message, focused on healing: There will be very little bleeding. The wound will remain clean and dry and free of infection. I will go back to doing the things I like to do best. Illustration: Jenny Bowers   Humanize the hospital stay.  My daughters and I brought sprigs of lavender and rosemary to counteract the clinical smell of Clay&amp;#039;s hospital room and propped favorite family photos on the windowsill. The idea here is to introduce familiar totems of happy times to ease the stress and fear the patient is feeling by minimizing the sudden breach between his normal world and the hospital environment. My husband&amp;#039;s favorite poster was Churchill&amp;#039;s &amp;quot;bulldog&amp;quot; portrait, which we hung in his hospital room, and under it put the leader&amp;#039;s famous motto: &amp;quot;Never, never, never, never give in.&amp;quot;   The night before surgery, serve up a home-cooked meal, or at least a delicious dessert. Play games. We played charades, which got us laughing like crazy, and laughter is probably the best stress management technique.   You want to cheerlead, but not too hard! Rushing to reassure a loved one that everything will be hunky-dory in no time burdens him or her with unrealistic expectations on top of his or her own fears. Better to respond by saying: &amp;quot;The real reason you&amp;#039;re so afraid is that you want to live. You have a life worth fighting for and you&amp;#039;re going to do everything to help the doctor fight his battle for the best result.&amp;quot;      Seek support.  Create an email list to update family and friends on your loved one&amp;#039;s condition. This is especially helpful when you&amp;#039;re spending time in the hospital or during recovery at home. It will save you the exhaustion of talking to each family member and being overloaded with their responses. Ignore criticism: Remember, you&amp;#039;re doing the best you can. So is your loved one.   You can also set up a shared electronic family calendar to keep everyone up-to-date on your loved one&amp;#039;s needs, appointments and availability for visits. This also helps others see how and when they might help out. For a user-friendly, free calendar service that ensures privacy, go to Lotsa Helping Hands. It gives the subscriber (the main caregiver) a private Web community. It can even help you keep on top of daily chores by sending reminders for things like taking out the garbage. Illustration: Jenny Bowers   Arrange for fill-ins.  You cannot do home care alone. You must take a break\u2014at least an hour a day, every day, to refresh your brain and body by doing something pleasurable for yourself. Short-term, this may mean asking another family member or friend to sit in for an hour or two. Long-term, it may mean enlisting professional caregivers such as visiting home nurses. To figure out if your loved one needs a professional medical caregiver to supplement what you&amp;#039;re already doing, consider consulting a care manager. Evercare Solutions for Caregivers is a national care management service that helps you pinpoint options. You can purchase the service directly from Evercare. (A case manager comes to the home to make an initial assessment of the patient&amp;#039;s needs for about $600. Follow-up visits are about $125 per hour.) Or check if you could possibly obtain it through your employer&amp;#039;s benefit plan. If you are self-employed, call Evercare at 877-765-4473 and ask about their Caregiver Solutions program.   If you&amp;#039;re dealing with caring for an older friend or family member, you may want to consider hiring a geriatric care manager. Most are social workers or nurses, or people who&amp;#039;ve worked in the fields of psychology or gerontology. They know the ropes and can advise you on how to structure a long-term care plan, who to hire and what it costs. Geriatric care managers can be expensive, with fees ranging from $80 to $250 an hour. Medicare and most long-term policies won&amp;#039;t cover the cost, so you may want to consider scheduling a one-time consultation or short-term services, especially during the first few weeks of caregiving after a crisis.      Develop a future plan. After the Shock and Mobilization phase is over, the recovering patient and caregiver will enter a &amp;quot;New Normal.&amp;quot; It&amp;#039;s possible that the patient can&amp;#039;t or doesn&amp;#039;t wish to go back to living and working in the same way. Sit down with your loved one and work with him to list quality-of-life goals and the steps needed to achieve them. After a later surgery, when Clay had to eat liquefied food through a gastrointestinal tube, I worked hard not to let that stop us from eating out in restaurants\u2014one of our great pleasures. I coaxed him to try a trip to France. In Paris, I asked the chef of a restaurant near our hotel if he would be kind enough to use our blender and grind up a meal of chicken, potatoes and fresh vegetables for Clay. The chef was very sympathetic and eager to oblige. He sent out two waiters with silver pitchers held high on trays. They blocked the view as we ate. It was an unforgettably romantic evening. If we could do it in a French restaurant, we could do it anywhere. I got used to stopping in to confer with chefs or restaurant managers before making a reservation.   Also discuss treatment outcomes\u2014 what does your loved one want and not want? For example, does he want to continue with the most aggressive treatments even if the prognosis is poor and/or his quality of life will seriously be affected? Then talk about possibilities for a future beyond the immediate crisis.   My husband and I took many long walks over the next year after his first cancer diagnosis, talking about what he most loved about his work as an editor. Talking helped him figure out what was important to him and what he wanted from the rest of his life. Clay realized that what he really loved was shaping young talent. After months of us exploring various universities, the University of California, Berkeley, asked him to create the Felker Magazine Center at their Graduate School of Journalism. We decided to pull up stakes and moved to California to start a new life. My husband took on an active teaching role and I commuted between New York and San Francisco. After facing the prospect of death, we felt young and in love all over again.   Throughout the long undoing of his body and throttling of his ability to command a room with his booming voice, Clay&amp;#039;s spirit expanded in intensity. In his last years, he showed as much interest in the personal lives and aspirations of his home health aides as he had in his up-and-coming writers and editors. A quote from Albert Schweitzer sums up the magic he passed on.   In everyone&amp;#039;s life at some time, our inner fire goes out.     It is then burst into flame by an encounter with another human being.    To his last breath, this was the Felker effect. Illustration: Jenny Bowers "^^<http://www.w3.org/2001/XMLSchema#string>
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