Tuesday, November 16th, 2010
I had a busy couple of days at the Miami Valley Alzheimer’s Association Symposium, along with hundreds of family members and professionals in the field.
Sold fifty books, which was great. And sold them to the best of readers, those who are wrapped up in the disease, both its devastations and cure.
Above all, beyond my own talks, I heard story after story. The ones that come back to me now, a few days later, are about family troubles. About the caregivers, for example, who have left their own lives to move in with their parents. Or the woman with four siblings: “Two of them say there’s nothing wrong with my mother, and two of them fight me every step of the way.”
Or the woman whose brother was suing her to get back everything she had spent on their mother’s care. He wanted his inheritance.
Or the woman whose father abandoned her mother when she became forgetful and confused. He took all the money, went to live elsewhere, doesn’t visit, doesn’t want anything to do with his wife of many years. The daughter struggles to keep her mother at home, but doesn’t know how long she can go on, emotionally or financially.
Behind so many of these stories: the money. Caregiving takes money, whether you’re doing it yourself or paying some assisted living center or nursing home to do most of it. (Nursing Home, incidentally, is now something of a pejorative description. The facilities are all leaving it behind in favor of more hopeful terms such as Health Campus.) Care facilities are big business—and as my mother was fond of saying, “All it takes is cash.”
Actually, what is most needed is human will. We need both: money and the desire to help. And in some 350 people at the Dayton symposium, I found plenty of human will and drive. No wonder: everyone there had seen Alzheimer’s up close, and knew its devastations. It was a powerful and effective symposium, their 19th annual, and perfectly organized.
Monday, October 18th, 2010
Alzheimer’s is an industry. Every day I receive notices of panels, commissions, double-blind drug studies, memory walks, research into tau and amyloid-b plaques. From the White House, Preparing the Nation to Better Address The Challenge of Alzheimer’s. From eurekalert, New Findings on Iron and Alzheimer’s. From reutershealth, Mental Acuity Not Linked to Calcium, Vitamin D. From USAgainstAlzheimer’s, Voters Want Congress to Make Alzheimer’s a Priority. From UCLA, Neuroscience Research May Help Patients Recover from Brain Injury.
All those, and several others, came from a single day’s reports at Alzheimer’s Daily News.
I’m glad of the seemingly-vast research being done on this disease. Even more is needed, I’m sure. As Maria Shriver and the Alzhehimer’s Foundation reported last week, “With the baby boomers entering their mid-60s, an Alzheimer’s tsunami is about to hit, with the number of people with Alzheimer’s disease expected to triple, reaching as many as 16 million by 2050.”
The devastation of the disease is vast, and so is its medical complexity. The debate rages about causes and possible cures—and every day more people tumble into the hole of memory loss, language loss and the loss of the self. And tumbling beside them are their caregivers, and they suffer as well.
Since the time I was living with my father and taking care of him, I’m sure a thousand medical studies have been done on Alzheimer’s and other dementias. Even at the time there was plenty to read on the Web—but for most hours of those days, seven days a week, I was busy with my dad. When I could, I read books. I read David Shenk’s great biography of Alzheimer’s, The Forgetting. I read pieces of the meaty, practical advice in The 36-Hour Day. I read only a little about the drug research, the trials and animal studies.
What I had to read were the personal stories of people who had been through the chaos and disaster that was engulfing both my father and me. It was memoirs I wanted. Well-written, poorly written, I tracked them down and read every one I could find.
Today there are more of them. Hundreds, perhaps thousands, now that self-publishing is so common. But those early memoirs saved my life, or so it felt. Eleanor Cooney’s Death in Slow Motion was the first, and it brought me to my knees. Then John Bayley’s exquisitely-written Iris, An Elegy. And the the most adroit of them all, with insights on every page, Aaron Alterra’s not-very-widely-known The Caregiver.
It was my response to those books that made me think I had to write my own memoir. I read and read, then I wrote and wrote.
Under Other Alzheimer’s Memoirs on the sidebar, you’ll find two dozen reviews of the books that moved me.
Tags: aaron alterra, Add new tag, alzheimer's, alzheimer's memoirs, caregiving, david shenk, death in slow motion, eleanor cooney, Iris an elegy, john bayley, maria shriver, the caregiver, the forgetting, the last of his mind
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Saturday, October 10th, 2009
I’ve been rereading that classic text on Alzheimer’s, David Shenk’s The Forgetting: the book that first located me about the disease and helped me understand it.
Shenk did some of his research on the Internet, which was where he connected with dozens, perhaps hundreds of people involved in “a never-ending swap of empathy, camaraderie and advice” about the many trials of the caregiver. “Hanging over all the painful details like a wide porch roof was a rich poignancy, a sense that these family members had been tested and dredged for all their depth of feeling.”
Beyond that, where he had expected to find people worn out and drained by the demanding care of their parents and spouses and siblings, he was surprised to find a group so involved that they fairly sang to each other. “Here were people,” Shenk writes, “in the throes of a slow, horrible loss, aggravating and draining, yet many seemed to be experiencing the fullness of life in a way that made me as a distant observer feel perversely envious. No one in this group seemed dead to the world, stuck in old habits, numb and sleepwalking through daily chores. These people were buzzing with life.”
This was both lovely to read and a confirmation of how I had felt up to then, in that year that I looked after my dad. The repetition of chores was stunning at times—but there was never a night I went to bed and thought, What am I doing here? or, Is this all there is to life? These are questions that come over me periodically here at home. They are premonitions of depression, and I never know when they might pop up. I look around at my life and have my doubts. It’s the same life it was the day before, but suddenly I’m thinking that dreadful thought: Is this all there is?
But this never happened when I was looking after my father: not once the entire year. I was, I’d have to say, buzzing with life that year. I was involved, I was engaged, I was right there with my dad every day. It was quite a while before I recognized this and appreciated it as one of benefits of suspending my other life and coming to live in my father’s house.
As I wrote near the end of The Last of His Mind,
“All year I’ve been one with my father. Of course I’ve been sad at times, even miserable when he was miserable, but not once have I been depressed. I’ve been engaged, I’ve been involved, and that is happiness to me.
“Distance, uninvolvement, reserve: these are my enemies. I probably learned them from my father, with some help from the world at large. And now, ironically, he’s the one who has connected me to the rest of the world. I remember moving into his house, how afraid I was of living under the same roof with someone, afraid of being trapped. I’m far beyond that now. I’ve been consumed by my dad’s life, and now I’m consumed by his death. It’s coming, and I’ll be here.”