Archive for the ‘Uncategorized’ Category
The End of Semagacestat
Monday, August 23rd, 2010
Here’s an interesting article in the New York Times about the failure of one of hundreds of drugs designed to slow the decline of Alzheimer’s. Eli Lilly recently halted their extensive and expensive trial of semagacestat becaue the drug was actually making patients worse.
Lilly spent hundreds of millions on this drug, the Times reports—and it is one of hundreds of experimental drugs attempting to lower the accumulation of beta amyloid, a toxic protein, in the brain.
The trouble is, we don’t know for sure that this is what causes, or helps to cause Alzheimer’s. The Times quotes a researcher who explains that we don’t know what the drug targets for Alzheimer’s disease are. “We don’t know because we don’t know the causes of Alzheimer’s.”
Advances have been made recently in tests (PET scans of amyloid plaques, and cerebrospinal fluid tests) that detect amyloid accumulation well before the appearance of Alzheimer’s symptoms. Sitting on the beach recently with LL, my daughter-in-law, I suggested that I’d probably be a good candidate for such tests. I’m 67, and both my father and my mother’s mother had some kind of dementia, so it’s on both sides of my family. LL, who’s a savvy GP, said, “But why would you want to? They might diagnose it correctly, but they can’t help you.”
I wasn’t really considering such tests, it was just a notion. I remain both fatalistic and optimistic. I see no reason to worry right now—but in the long run it doesn’t look good for most of us. If we live long enough, the likelihood of some dementia is large.
I go back often to Peter Whitehouse’s book, The Myth of Alzhehimer’s. (You can read a review of it on the Sidebar page, Other Alzheimer’s Memoirs—even though it’s not a memoir.) Whitehouse, one of the original and influential researchers of the disease, points how how long we have been studying dementia, and how little we are absolutely sure of. As Whitehouse puts it (this is from my review), “most people in the Alzheimer’s empire know that ‘there is no singular disease called “AD,” and that it is a complex, scientifically imprecise social construct that may never be cured.’ And because of this, we would do better to focus our efforts on enlightened care than to pour all our money and attention into finding a cure for this little-understood disease—if indeed Alzheimer’s is a disease at all, rather than simply an effect of brain aging.”
The failure off the Lilly drug, semagacestat, is another setback in a vital field of study. I’m hoping for better discoveries, but so far I remain fatalistic about a stunning chemical solution.
At the same time, I’m never fatalistic about what caregivers can do. Every day, in a hundred ways, a caregiver can do a better job, can make things easier, can lift up those who are declining and dying.
Posted in Uncategorized | No Comments »
Atul Gawande in The New Yorker
Monday, August 16th, 2010
I’ve read a hundred articles and books about dying. The best of them all is Atul Gawande’s piece in the August 2nd New Yorker, “Letting Go,” in which he writes about the choice that must sometimes be made between fighting to stay alive (or keep a patient alive), and accepting an approaching death.
Gawande is brilliant. I called up his father here in Athens, Ohio (Ram Gawande was my urologist before he retired) to tell him I think his son is a genius, and to ask how Atul managed to write one fascinating article after another for the New Yorker, even as he carried on a full surgical practice in Boston. “He’s very busy,” Ram said.
Busy and focused and the best medical writer we have. “Letting Go,” subtitled “What should medicine do when it can’t save your life?”, is subtle and painful. At the heart of it is that meeting (if it ever occurs), in which a doctor tells a patient that there is nothing that can be done to help or cure his disease. That almost no hope remains.
Of course there is always some hope. Miracles have happened, and we’ve all heard stories about them. The problem is that in pursuing yet another chemotherapy regimen or series of radiation treatments, we sometimes overwhelm the patient, keep her in the hospital when she might be at home with her family, make her last days a nightmare of mechanical ventilators, electrical defibrillations and feeding tubes. As Gawande writes:
“Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or ‘It’s O.K.’ or ‘I’m sorry’ or ‘I love you.’”
You can read the full article here.
Most affecting in Gawande’s writing are the stories of his own insecurity, the awkwardness of having that painful discussion with a terminally ill patient. When he does what we might consider the “right” thing, it may not work. From a transcript of questions readers asked of him about the article, I found this additional story, in which Gawande admits that discussions about death don’t always work out well:
“I broke the bad news of an incurable and rapidly aggressive cancer to a patient of mine recently. I tried to think about the best ways to frame it. I said, the clear option to give her a chance of a lottery ticket, of actually controlling the cancer, would be chemotherapy and radiation. But then I said the hard thing, which was [that it is] rare for people to live more than a year or so. If she proved to be one of them, we would dance in my office. But we also needed to think about what was most important to her if she wasn’t one of them.
“When I talked to her a day later, she was angry with me. She told me she read on the internet about people who were cured and they said not to listen to the doctors.
“I didn’t sleep very well that night. I had hurt the trust she had in me. And suppose I was wrong? But then a week later, when we talked again, she was grateful. She pushed ahead with further opinions and then treatment, but I think we are also beginning to think about the limits of what she wants to take as this goes along.”
This is surely one reason that doctors don’t want to tell the truth: it takes hope away from patients, and it can anger them. But to sugar-coat the facts, or simply not report them, and to let terminally-ill patients believe there is much greater hope than science can allow, might result in another patient withering in an ICU instead of making his peace at home with death and his family.
My own father died without ever talking about his death. But then, that was his choice—compounded by a dementia which left him unable to say anything near the end. My girlfriend, Jan, who died three summers ago, didn’t want to talk about death either. Not to me, and not, that I heard, to anyone else. The result was that she was taken to the hospital one day with a failing kidney, suffered some small strokes (they showed up later on either a CT scan or an MRI), and was unable to say more than a few words in the last week of her life. Her family and friends gathered, a world was created around her hospital bed, she underwent test after test. Her brother and I made a move, at the very end, to get her into a hospice center in Columbus, but by then it was too late.
I’m sure many caregivers feel the way I did with both Jan and my father: unsure about pressing someone else to talk about their own death. But I’m also sure of this: I wish everyone would read Atul Gawande’s article, which is a huge step toward an open discussion of how we want to spend our last days and hours.
Tags: alzheimer's, atul gawande, caregiving, terminal illness, the new yorker
Posted in Uncategorized | No Comments »
Pinned Like A Bug
Sunday, August 8th, 2010
I’m back at my dad’s house, sleeping in the same little room where I lived for the last year of his life. Things have changed, of course. My family is here (or most of us), and off we go to the beach, we go kayaking, we play badminton and cook dinners on the grill.
But in this house my father is never far from my mind. This is the place of Alzheimer’s. Here is the lift chair he sat in, the bed he lay in. Here is where he retreated from the world.
I can take, at times, a somewhat-cheerful stance on Alzheimer’s. I can think about the true connection I made with my father in that last year. But here in his house, what I most remember is how he retreated from life, how it defeated him, how he lost interest in everything.
Talking to a woman from the local paper, I hear the same story about her grandmother. This is the story I’m always alert to: of an Alzheimer’s patient, once lively and inquisitive, who no longer wants to do anything, who now just stits in a chair, who resists all efforts to keep her involved with other people and the world. Perhaps it’s because I’m alert to it that I hear this story so often—but it’s the story I can’t escape, the one that pins me like a bug to a cork board.
Life at its best is filled with will power, with drive and curiosity and excitement. Instead of this, what overcomes so many Alzheimer’s patients is a kind of endemic, untreatable depression. Prozac or other SSRIs might lift an edge of the blanket, but in my father’s case the loss of interest in the world seemed vast and incurable. To forget names and people, to lose track of his own history was painful to him. But what it led to was worse: the time he spent with what seemed a determined will to do nothing. He didn’t want to be roused. He wanted only to sink. It was terrible for him, hence terrible for me—and it’s the story I hear from one caregiver after the next.
Tags: alzheimer's, caregiving, dementia
Posted in Uncategorized | No Comments »
Essay in The Sun
Saturday, July 31st, 2010
The Sun, an elegant, ad-free magazine full of good personal and political writing, has published an essay of mine, “Just Shoot Me,” in their August issue:
http://www.thesunmagazine.org/
The essay begins: “My father, as he approaches his own death, never speaks about it. But I know he’s thought it through and wants to avoid a lingering, painful end. I’m sure of this because of the pills I found in his closet.”
Posted in Uncategorized | No Comments »
Mistreatment of Alzheimer’s Patients
Wednesday, June 30th, 2010
Here’s a scary report. According to Alzheimer’s Daily News, “A recent study by UC Irvine’s Center of Excellence on Elder Abuse and Neglect examined mistreatment of elderly who have been diagnosed with Alzheimer’s or similar disorders. The study found that nearly half (47%) of the 129 participants in the study with Alzheimer’s had suffered some degree of mistreatment by their caregivers.”
Mistreatment is a broad category, so it’s possible. But Alzheimer’s Daily News goes on to report that “the researchers discovered that the best indicator of mistreatment was examination of the behavior of the dementia sufferer toward the caregiver. Mistreatment was most likely to have occurred when the elderly resident exhibited psychological and physical aggression toward the caregiver (i.e. pushing, shoving, and swearing at the caregiver).”
In other words, the study’s authors believe that it’s mistreatment by caregivers that gives rise to the obstreperous behavior of dementia patients.
I find this hard to believe. Everything I experienced with my father, and every caregiving story I’ve read, leads me to think it’s the luck of the draw as to which Alzheimer’s patients turn refractory. Cantankerous old women may turn docile, and formerly respectful men may lash out at the wives or children they no longer know. How the study’s authors tie mistreatment to pushing, shoving and swearing seems tenuous to me—especially since the report includes this clarification: “It is important to note that the study does not determine whether these behaviors preceded or followed the mistreatment.”
Hey, doesn’t that negate the whole concept of cause and effect? I’d say it’s back to the drawing board for this study and its authors. They might want to tighten down on their data collection as well, since “Most of the data was provided by the caregivers.”
All that said, I can easily see how “mistreatment” (such as confining a dementia patient to a nursing home, to their own homes, to schedules they feel uncomfortable with) could lead to the behaviors mentioned. It’s a miracle that Alzheimer’s patients don’t try to burn down the world. The frustration of the disease, the agony of forgetting language and people and all one’s past: it would be enough for me to go into a rage, I’m sure. Still, laying the blame of rowdy behavior by Alzheimer’s patients on their caregivers seems to come from a chilling and narrow perspective.
Here’s a free link to the study results. You can read the full study online, but you have to pay for it.
Posted in Uncategorized | No Comments »
Smacked by A Pair of Stories
Monday, June 21st, 2010
I’m healthy. I feel reasonably spry, and am about to head off on a canoe trip with an old friend, Deerfield Academy class of 1960, down a river in Nebraska. (We made the same trip last year and didn’t see another soul on the river for five days.)
But just last week I attended my fiftieth Deerfield Academy reunion, and was smacked by a pair of stories.
The first was the death of Tom Sieminski. I hadn’t seen Tom for fifty years, but none of us had forgotten his beauty and great good humor. In the fall he wrote in his report: “Right now I’m dealing with pancreatic cancer”—and well before the reunion he was dead. He joins eighteen other members of the class who have died, with 125 of us still kicking.
The second story was the distant look and shuffling gait of Doug N, a guy I had only known tangentially at Deerfield. Doug could now only speak in a whisper, and he had trouble completing almost any sentence, any thought. I was immediately drawn to him: to his struggle, and to his courage at coming to the reunion. He had a friend, perhaps an old lover—I heard different stories—a woman ten years his junior who had come with him, who gave him his medications, who looked for him when he got lost, who made the whole visit possible. “Doug has Parkinson’s,” she told me simply.
Talking with him was like talking with my father in the middle stages of his dementia. Doug struggled to put his ideas together. He often looked lost. He’s just my age, of course, which made it a shock to see him having such a hard time with language. Day by day, at home in New York, he may do better than at a crowded reunion with lots of noise and dozens of old acquaintances. But what I saw, or imagined, was someone who had things to say and stories to tell, but who could not get them out. I put my ear close to his mouth, trying to catch as much as I could (Parkinson’s patients sometimes lack the muscle control needed for loud speech), but then his words would give out altogether, and he could not explain what he was trying to say.
I’m drawn to dementia, I’m drawn to struggle, I’m drawn to loss. One hears plenty of successful stories at the 50th reunion of an eastern boarding school—but it’s the harder stories I want to know about. And with Parkinson’s, a lot is played out right on the surface.
But of course, I’m still so healthy.
Posted in Uncategorized | 2 Comments »
A Cup of Black Coffee
Monday, May 31st, 2010
I look back with some dismay at a conversation I had with my friend Sandy Weymouth, during the time I was looking after my father (it’s in the book):
“He never asks for food and never asks for water,” I said.
“How long have you waited?”
“Not very long. Sometimes he asks for a cup of black coffee.”
“Do you give it to him?”
“Decaf,” I admit. “Which isn’t what he wants, but he’s not supposed to have caffeine.”
“Says who?”
“The doctors. The pamphlets, the Internet.”
“Your father asks for a goddamn cup of coffee, give it to him. What are you protecting him from?”
(The photo goes back to pre-dementia days: the only one I can find with him and a cup of coffee. Iced, in this case. )
My father, when I lived with him, rarely insisted on anything. He rarely even made a request—but he wanted a cup of coffee and I wouldn’t give it to him. I’d read that he shouldn’t have caffeine, should not be drinking coffee, so I gave him a cup of decaf instead.
And now what do I read, from a supplement to the Journal of Alzheimer’s Disease? That caffeine is good for patients with dementia, that it can slow their decline.
My friend Sandy had the right idea: I should have given my father what he wanted. It was the end of his life, he wanted a comforting and perhaps mildly exhilarating cup of coffee: give it to him.
I’m sure I made plenty of mistakes when looking after my dad. But for some reason, this one unnerves me out of all proportion. In five years, the official advice has changed completely—and common sense would have served me better. He wanted a cup of coffee! It wasn’t a shot of morphine, for god’s sake. Or a tablet of oxycodone, or Coumadin or Aricept or Cardura or Levoxyl, all of which I eventually gave him. It was just a cup of coffee, and I tricked him with some miserable decaf.
When something this small pulls at me so hard, I assume it stands for larger, more questionable decisions I made. Always thinking I knew best, of course—but often enough, I’m sure I was wrong.
Posted in Uncategorized | 1 Comment »
In The Stillness
Thursday, May 27th, 2010
I went back to Cape Cod last week for an Alzheimer’s Memory Walk. Long trip for a short walk, but I couldn’t resist, as the walk started just a hundred yards from my father’s house in Harwich.
I’ve been back to my dad’s house—now owned by my brother—every year since my father died, in 2005. But this was the first time I’d been in the house by myself. Things happen when we’re alone. In the stillness, there’s more room for emotion. On the first night I was browsing my father’s shelves for something to read (many books, lots of choices), and paused in front of a photo of him I hadn’t looked at for a while. He’s working on the crabgrass in the lawn at our house back in Connecticut, the brimming high tide behind him—and it knocked me out. I could feel his presence in the room. As I wrote in the last paragraph of the book, I could feel “his ambition, his knowledge, his failures, his devotion.”
It all poured through me because I was alone in his quiet house. And turning around, I remembered something I’d ignored when I went into the room, something I wasn’t thinking about at all: that was the room where he died. His hospital bed was gone, of course, and all the paraphernalia of a man at the end of his life: drawsheets, bed pads, an air mattress that inflated and deflated, a humidifier, an electric heater, his medications, his Depends. The room was now clean and orderly—but just there he had lain in his bed, facing east, unmoving for the last thirty hours of his life. I went to stand exactly where he had lain. It’s a small room. I know it well, and it was exactly here that I had rested my hand on his heart as he died. I could not have been off by more than six inches. And with that the memory of him overwhelmed me.
I want to be overwhelmed sometimes. It doesn’t happen that often, and comes as a surprise. But in that room his whole life was passing through my chest.
*****
Let me add a happy note about the book. ForeWord Reviews announced yesterday at Book Expo America, the national convention of book sellers and publishers, that The Last of His Mind was ForeWord’s Best Book of the Year in the Autobiography/Memoir category. Holy cowabunga! as my publicist said at Swallow Press.
Posted in Uncategorized | No Comments »
Brutal NIH Report
Saturday, May 1st, 2010
Every day I receive an email alert about Alzheimer’s developments from http://alznews.org. A couple of days ago two contradictory messages showed up at once.
One of them was a standard-issue note about the advantages of exercise, and how it was good for the brain. So many things are supposed to be good for the brain, and by extension to hold Alzheimer’s and other dementias at bay: exercise, a good diet rich in this, that and the other thing, including supplements like gingko biloba or fish oil (lots of advice floating around about diet), continued socialization and mental stimulation, typically exemplified by the crossword puzzle (as if there were not a thousand other ways to exercise our brains).
The second piece of news came from the National Institutes of Health, and it is news that crushes much common and comforting advice. An NIH panel, after extended study, has determined that “There is currently no evidence considered to be of even moderate scientific quality supporting the association of any modifiable factor (nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical condition, toxins, environmental exposures) with reduced risk of Alzheimer’s disease.”
In other words, we can’t say for sure that anything will help stave off or delay dementia. There’s no solid evidence that a better diet really helps. That exercise helps. That trips to a Senior Center help. That the use of prescription or non-prescription drugs will make Alzheimer’s more or less likely.
It’s a hard report that makes much of our efforts seem somewhat like voodoo. And in fact, it mirrors to me the sense of inevitability I often felt about my father even after his mind started to go.
The speed at which my father declined was so stunning that the dementia always seemed far more powerful than anything I could do to combat it. Did exercise help? The improvement in his diet after I moved in and started to cook for him? My steady presence and the socialization that implied? His decline was so marked that the best I could feel was that he might have done worse otherwise. My dad was on Aricept, but as far as I could see it had no more effect than a watercress sandwich. Of course, once again, he might have done worse without it. A single patient remains an anecdote, his story is not scientific.
Dementia is what happens to lots of older brains. There may be ways to slow down its onset and proliferation, but so far we have no solid evidence of what really works and what doesn’t. This is hard news, but it won’t change much in my life. I never did care for crossword puzzles, and I’ll keep on exercising, not smoking, eating well and staying close to my friends. It’s how my father lived, and he did make it to ninety before he dropped off the cliff of dementia.
The NIH report is at http://consensus.nih.gov/2010/alzstatement.htm
Posted in Uncategorized | No Comments »
The Other Life, The One We Long to See
Monday, April 19th, 2010
“There are really two kinds of life. There is, as Viri says, the one people believe you are living, and there is the other. It is this other which causes the trouble, this other we long to see.” ––James Salter, in Light Years.
I think this is what I find so electrifying about Alzheimer’s memoirs. Dementia is in a sense a dreary topic, all decline and desperation. But down in the trough we see that other life Salter talks about, the one people hide, the one they don’t want to show—and the one I long to see. Because of course some kind of breakdown is never far from any of us. It could be an oldman who turns difficult, cantankerous, even violent, as Alzheimer’s strips him—though never entirely—of his old graces.
Or the breakdown could be taking place at the other end of the ladder. With my grandson, for example. Consider the following scene, so close in spirit to the stubborn resistance and fierce will of the ninety-year-old professor mentioned above:
I was in Denver ten days ago, visiting my son and his family. Twenty-seven-month-old Max was sitting at the table, ready for dinner, which was on the stove but not quite done. Max, who is not that interested in things that will happen ten or fifteen minutes later, wanted his food now. To hold him at bay, his mother, LL, set him up with a piece of paper and a felt marker, so he could draw or scribble. But Max wasn’t interested in drawing, and quite deliberately, when we were all watching, threw the pen on the floor.
Not allowed, of course, and it drew a reprimand from both his parents. At which Max, using the back of his hand, with his eyes leveled on his mother’s, slowly pushed his plastic dinner plate off the table.
It fell with a clatter. LL lifted him onto the floor and asked him to pick it up. He would not.
“Then you can’t eat dinner. Not until you pick up the plate.”
The lines were set. I won’t describe the prolonged battle in detail: every outburst, every crumple to the floor, every claim that he had to use the potty, that he had hurt himself, that he was desperate for food. Affection was not withheld. Both Janir and LL picked him up several times and hugged him and told him they loved him—but he had to pick up the plate. Which was the one thing he absolutely would not do.
A timeout on the stairs wouldn’t work. They knew from experience that he would simply climb down. They could have locked him in his room and let him bang his head against the door, resoundingly—but their interest was to have him pick up the plate. One simple act. Not of contrition, just the pure act of picking up the plate he had brushed off the table.
He wouldn’t do it. The strength, the depth of his refusal was epic. It went on for an hour, during which the meal was served and the adults ate. I’d say that overall, Max was winning. We were all still talking about the plate, rather repeatedly, and he was not picking it up.
Invention. It’s no less important for parents (or for the caregiver of someone with Alzheimer’s) than it is for a Picasso or Flaubert. Or so it seems to me. A truly creative person is the one who can find a way out of a knock-down, drag-out battle with a two-year-old. And that night the one who saved us was Janir, who finally suggested, like a general avoiding an outright rout, “Max, how about we go up and take a bath?”
Ten minutes later I went up to see them, and Max was his usual happy self in the tub, playing with his toys and splashing around.
When they came down, with Max in his nightsuit, there came the awkward moment. Dinner was ready for Max, but first—and here Janir squatted down with him on the floor, making it as easy as possible—he had to pick up the plate. There was a terrible hesitation. Would he dive back into his apocalyptic refusal? Instead he bent, picked up the plate and gave it to his father. The adults all applauded him and told him how happy we were—and so ended another near-Armageddon.
Oh yes, that other life, the one we long to see. Often we have the ideal, gorgeous child, laughing and entertaining himself. And sometimes we have this other, the one that causes the trouble.
Tags: alzheimer's, alzheimer's memoirs, coercion, dementia, parents; the last of his mind; friendship; Deerfield Academy, two-year-olds
Posted in Uncategorized | No Comments »
Syndicate
