Kim TaylorBack to OpinionKim Taylor

Lost in the fog of Alzheimer’s

The road to my 56-year-old brother’s diagnosis of early onset Alzheimer’s was the northbound 605 Freeway through Southern California. It was the road that Dr. Stephen Taylor traveled everyday for nearly 30 years, first as a fellow at UCLA, then as a pediatrician and infectious disease specialist at King-Drew Medical Center in South Central Los Angeles. For months, his wife noticed that he was coming home later every day, but he was a busy man, even as the hospital he loved faced closure.

One day, he left work at 7 p.m., and failed to return home. He appeared some 12 hours later. Darkness had overtaken him on the way home and he had lost his bearings, driving almost 50 miles out of his way toward Santa Ana. He’d slept by the side of the road until daylight, too frightened to drive and too humiliated to call his wife to tell her he couldn’t find his way home in the dark.

Today, more than 5 million Americans suffer from Alzheimer’s disease; by 2050, that number will be close to 16 million. Blacks are twice as likely as whites to be diagnosed; Hispanics are 1.5 times more likely. About 5 percent will have the early onset variety that struck my brother, but all patients may show symptoms years before diagnosis. Alzheimer’s is the fifth leading cause of death of those over age 65, and the seventh leading cause of death in the U.S. overall. The cost of caring for Alzheimer’s patients is staggering, some $172 billion dollars per year — almost 35 percent of the Medicare budget – excluding the services of unpaid caregivers. By 2050, those costs could reach $1 trillion per year.

Yet, despite these numbers and no known cure or treatment to prevent the disease or halt its progression, federal spending for Alzheimer’s research equals less than 10 percent of amounts spent on cancer research, and less than 30 percent of research funding for heart disease. In fact, federal spending on Alzheimer’s research has remained flat for several years. And as meaningful as the donations from the Alzheimer’s Association and other private sources are, government funding is sorely needed to avert the coming crisis.

Because the damage caused by Alzheimer’s begins years before diagnosis, research into the disease takes many forms to address its different stages. These include drugs and therapies to prevent the development of Alzheimer’s, methods of earlier diagnosis, prevention of the loss of brain synapses which precedes the formation of Alzheimer’s distinctive brain plaques and tangles, and treatments to slow or reverse the development of those plaques and tangles, which are currently the focus of almost 90 experimental therapies alone. Stem cell research has shown great potential to help reverse the destructive effects of the disease, and numerous studies and trials are ongoing.

A sign of recognition of Alzheimer’s growing shadow was the unanimous passage by Congress of the National Alzheimer’s Project Act (NAPA), which became law on Jan. 4, 2011. NAPA, whose advocates include retired Supreme Court Justice Sandra Day O’Connor and Maria Shriver, calls for the creation of a national plan to fight the disease and to help patients and their families.

While a coordinated plan is a start, NAPA includes no increases in spending for research, currently about $527 million per year. And due to the current atmosphere of deficit reduction that has taken hold in Washington, the outlook for additional government funding for Alzheimer’s research looks bleak. The Alzheimer’s Breakthrough Act, introduced in July 2009, sought to increase research spending to $2 billion, but died in committee. Worse, there is grave concern that the agencies which are central to NAPA’s success, including the National Institutes of Health, are targets for budget cuts, which may reduce already inadequate levels of spending for Alzheimer’s research.

Aside from the financial costs, the losses for families and communities keep growing. My brother was the sole provider for his family for more than 25 years as my sister-in-law waged her own battle with lupus. He was a pioneering researcher of HIV/AIDS and sickle-cell anemia. He headed an AIDS clinic for children at a time when even medical professionals treated AIDS patients with fear and loathing. He fought tirelessly for medical access for South Central Los Angeles, a community devastated by poverty and violence. Having graduated from medical school at a time when there were few blacks in medicine, he mentored dozens of minority students through the years, many of whom went on to become doctors, nurses and scientists.

My brother died on Jan. 9, 2011, at age 60, the youngest Alzheimer’s patient in an assisted living facility in San Dimas, Calif. By the time he died, he no longer remembered how to use a fork. He trembled when his wife tried to shave him. Sometimes he forgot who she was; other times, he thought they were still dating.  Ironically, his last days were some of his happiest ones; he imagined that he was back in the hospital, in charge of his patients and students. His medical training never completely left him, and he managed during his year in the home to save two patients from choking to death by performing the Heimlich maneuver.

How many students missed out on his lessons, including his daughter, soon to be a nurse herself? How many more children might have been helped by research yet to come from his lab? Multiply that loss by millions of parents, grandparents, teachers and mentors, whose wisdom is lost in the fog of Alzheimer’s. How much more can we afford to lose?

Kim Taylor is a New York-based corporate attorney specializing in corporate transactions and regulatory compliance.

 

Comments

  • Marielle

    I had no idea that Alzheimer’s affected so many people. A powerful piece. Thank you so much for sharing your brother’s story. So sorry for your loss.

  • Kkfin81

    Thank you, Kim Taylor, for sharing this deeply personal story. The pain of losing someone who still had so much to share with others is unimaginable.

    While so much more is known about Alzheimer’s today compared to the late 1970s when my grandmother was diagnosed (at that time, it was a diagnosis by elimination only), we’ve also learned that there is much left to learn about it.

  • Marlene Stevens

    My husband of 46 years is presently lost in this Alzheimer’s fog. I lose pieces of him every day and the stranger that is replacing him is sometimes difficult to live with. I miss the man he was but I will always love him no matter who he becomes.

  • Sandra

    My dad, a former physician as well, has slipped into Alzheimer’s. My mom served as his caretaker for many years, but in the past two years, he has slipped tremendously fast–and in less than a year went from independent living to assisted living to a total care facility. He does not remember any of us any more. While dementia can manifest itself in more than 50 ways, my dad (thankfully) has slipped into happiness and contentedness–he is has laughed finally, for the first time in a long time and enjoys trying to make others smile.
    I miss my dad terribly, and have blogged about this experience over the past year or so at yakkergirl.wordpress.com/category/dad/

  • SonofLost

    My mother is 90 and has been gradually losing herself for the last 5yrs. She would be horrified to know the behaviors she exhibits now during her bad days. I believe assisted suicide should be an option for people in my mother’s condition.

  • Xuxi

    My mother is 91 and has been in home care for over 5 years for Alzheimer’s, but we only know now in retrospect that the symptons were there a lot longer ago, if only we had known to look for them. My brother and I had tried to move her from Hong Kong the US some 15 years earlier when my dad died but she stalled and eventually never moved. Ironically, that turned out to be a good thing, because domestic home care in HK is affordable in a way that it isn’t in the US. But it has meant I’ve moved back home to HK to help with her care as we only had one sister in HK and it was getting hard on her to be the only family caregiver. The impact on family for an Alzheimer’s patient is tremendous. Also, knowing we (her children) are now potential future Alzheimer’s patients ourselves is perhaps the most troubling and frightening thing. The need for research is huge and insufficient at the moment. Given that people can live longer and older, thanks to improved medical care, we as a country need to recognize the problem a spate of elderly (and younger) Alzheimer’s patients will have on society. I hope your piece about your brother helps to bring attention to the problem. Very sorry for your loss. Take solace in what happiness he did feel near the end; there are good days when my mother is at peace because the sun is shining or the flowers are blooming on her balcony, even as she remembers less and less.

  • Robin

    This was a moving article and points out the tremendous loss to the community at large. Dr. Taylor sounds like he was a wonderful man who had much to contribute to the world. In 2006, my own father died at the age of 68 due to early-onset Alzheimer’s. We first noticed there was something seriously wrong when he was in his mid-50s and later on, we were able to look back and see that it was already taking hold while my father was in his 40s. He always had problems with his computer and other equipment that no-one else had – but it was years before we realized what was going on.

    A good friend of mine is currently slipping away into Alzheimer’s at the age of 70 – she has always been an active and vibrant woman and was a nurse. I hate Alzheimer’s disease.

  • Peg Jacoby

    I’m so sorry for your pain in witnessing your mother’s suffering and descent into Alzheimer’s. My mother developed the disease in her late 80s and she died when she was 94. You mention the possibility of assisted suicide, but these people cannot request help, let alone do anything themselves, which this practice implies they would require them to do. Also, if they are not physically ill and residents in a facility, this could be impossible. My mother had always said she didn’t want to be kept alive if she were ever seriously impaired by illness, for instance cancer. She had told me many times over the years that she did not wish to be on life support. Now,even though she was confused about many things (she forgot what a telephone was for and halfway through a visit with me she got very vague about who I was), she could speak–yet she never said she wanted to die. So, SonofLost, maybe it should be an option, but our society needs to become a lot more enlightened before it will, and it’s tough to tell what people really want even in extremis. Again, I’m very sorry for what you’re both enduring.

  • thomas higgins

    As a country we really need to focus on the early prevention of many diseases whose symptoms may be seen early on. Being that as a nation we are living longer and healthier lives you figure more money would be pouring into the research of such a devastating disease. More funding needs to go into “defending” the health of our citizens. Genetic research is @ warp speed in making breakthroughs regarding DNA and disease. Stem cell research is another area which i believe new discoveries will be found. i pride myself @ some of the things i can remember in vivid detail….yet @ 45 years of age with no one to care for me should anything happen…i honestly feel fearful when i cannot spell a word or recall something. I am sorry for your loss, your family and friends loss, and a communities loss. This article brought tears to my eyes. Thank you for your courage and unselfish generousity in sharing.

  • Peg Jacoby

    I am so moved by your story of your brother’s disappearance into the fog of Alzheimer’s, Kim. He was very young–and was a very promising man with a keen mind that will be missed. All I can say is that it is horribly hard to lose a brother (or sister), and this is often overlooked. My brother died of AIDS ten years ago–he was a physicist/oceanographer who had been sick for 14 years; and more recently, our mother died of Alzheimer’s at the age of 94. And, yes, watching her go from a magnificently organized woman who thought nothing of putting together a dinner party for 12 and coordinated a theater company, to someone who couldn’t walk and had forgotten what a telephone did was a horrific experience. Thank you for sharing your story so fully, and I hope your pain eases soon.

  • Wendy

    Hearbreaking, and I am so sorry for your loss. I hope this will bring attention to this illness…. thank you.

  • Dorothy Johnson

    Sorry for the loss of your mother, Peg. I know what it’s like to lose one’s mother, though mine didn’t die from Alzheimer’s. You are right that the death of a sibling is often overlooked. I recently experienced this. Your love for your mother will see you through.

  • db

    You are a brave and loving woman Marlene . . . your husband is very blessed.

  • Anahita

    Thank you for sharing.

  • allan

    “Death rates for other major diseases — HIV, stroke, heart disease, prostate cancer, breast cancer — are declining. Alzheimer’s is the ONLY top 10 cause of death without a way to prevent, cure or even slow its progression.”

    See: “Boomer Report”
    http://www.alz.org/boomers/?tr=y&auid=7809469

  • http://twitter.com/ihatealzheimers Just Me

    Thank you for such a moving article, Kim.

    The phenomena of early onset Alzheimer’s boggles my mind but I have met several individuals who suffer from it. I lived through the disease as a caregiver for my mother, who passed away two years ago in her mid 80s but it is still incredibly painful for all involved, no matter the age. Her sister and both of their parents also had the disease so we had some idea of what to expect but until you walk a mile in the shoes of a caregiver or individual with the disease, it is hard to understand the impact of this heinous affliction. Awareness is key if a cure or effective treatment is to be found. Oh how I wish I had millions to contribute to the cause but I will do what I can with my local chapter to help educate the public, who, unfortunately, want to stick their heads in the sand about this disease.

  • Dorisden1

    My brother is in a nursing home. He had a triple by-pass 5 years ago; but, was able to work until about October of 2010. Now, he knows some of us–we are 5 sisters and we visit him as often as we can. While we are with him he knows us for awhile then he begins to talk about the job he is working on and jobs he helped my grandfather on years ago. They used to work with horses in the wood to haul in timber, etc.

    Anyhow, we are all amazed because he is not strong enough to want to go home. In other words, he does not know where he is and he does not seem to remember he has a home. Certainly, there is no one who is available to take care of him at home. He needs 24 hour care and is getting good care where he is.
    If you have any information about articles that would help us understand his situation, please send them to me at dorisden1@comcast.net

  • Atan

    This article will do so much good. People don’t have the facts–and they don’t realize that the numbers now will grow even more as the Boomer generation matures. My father developed Alzheimer’s when he was in his early 90s and died at 96, but I had access to care for him so our situation was not as heart-wrenching as some here. My sympathy for everyone going through this experience.

  • Weedie123

    My heart goes out to you. I lost my mother to Alzheimer’s after an 8 year journey. As her primary caregiver, I learned so much through the hard, horrible, and in the end, the sweet times. My mom lost her language skills but always smiled when she saw me. This truly is a terrible disease and takes its toll on the caretgivers. Hopefully we can find out what causes this disease.

  • Carol

    My mother died of Alzheimer’s and now my younger sister has it. She is 63 and it became noticeable when she was about 56. What a horrific disease! It not only hurts the recipient, but also the family and caregiver! My sympathy goes to all who have it and those who live with someone who has it.

  • Dark Cloud of Worry

    As a potential “next generation” of Alzheimer’s – I say we must find a way. Watching my father in the end stages and fearing that I will follow is no way to live. Some where there has to be hope, prevention, treatment and/or a cure!

  • Marcimayn

    Years ago, my family watched my great-grandmother, an energetic, can-do woman, the first in our family to come to the U.S., descend into the haze of Alzheimer’s. There wasn’t much we could do then but witness her slow deterioration, her even slower dance with death. I hated to see her not remember who I was when a minute before she was lucid and totally aware. It was and still is painful.

    It’s difficult to lose a sibling, especially one who still had so much to contribute. Thanks for telling us about your brother, Kim. My condolences to you and your family.

  • http://terezan.tumblr.com/ Tereza

    What a heart-wrenching piece. Thank you, Kim.

  • http://www.facebook.com/katie.orenstein Katie Orenstein

    Kim. An amazing piece. Thank you.