John Thorndike | The Last of His Mind |

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Deluge of Information

Monday, October 18th, 2010

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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.

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Rising to the Occasion

Tuesday, March 9th, 2010

After a reading I did with the Alzheimer’s Association in Columbus, a woman in the audience told us the story of a friend of hers, not yet sixty, who suffers from dementia. It has progressed enough that she’s living in a nursing home, from which she rarely escapes. In fact, she doesn’t want to escape. She doesn’t want to go out and deal with the world outside.

Her friend visits her, hoping to keep her connected to life: to other people, to the world going on outside the home. But her friend, the Alzheimer’s patient, is perfectly clear: she doesn’t want to get dressed and go out on any kind of expedition. She wants to stay where she is. She’s comfortable there. She has given up, any of us might say. But it’s no surrender to her. She’s simply more at ease in the home with her routines, with the familiarity of it. She doesn’t want to be connected to the world.

As I had read that day from the book: “My father seems to have given up—but maybe that’s what he has wanted all along. And if he wants to give up, doesn’t he have the right to? …It’s true that his mind is going, but who’s to say how he should spend his days? Who’s to say he shouldn’t sit in a chair and do nothing? Who’s to say, even, that he ought to do things that will make him happy?

“Night falls and wind rattles the windows. I worry about my father, but I also think about something Joe said when he was here, that Alzheimer’s patients sometimes need to crash. They need to give up for a while, and stop rising to the occasion.”

That’s our expectation for seniors, the same as for children: we want them to keep rising to the occasion. But should we be forcing them to do this, when they clearly do not want to?

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Book Recommendations at Blackbirdinc

Monday, February 15th, 2010

Though the proximate demise of the book is often foretold these days, almost 300,000 new titles were published in the U.S. in 2008. (This according to Bowker and their Books In Print database.) Readers are dying off, it’s said, succumbing to the lure of their various screens—though I’m at my screen as I write this, and I have yet to be rendered insensate. And if I’m part of a dying breed I’ve got plenty of company.

Along this line, here’s a heartening website. Jeff Haden has taken to asking people whose books he admires to recommend the books they love, or are currently reading. blackbirdinc.com. presents an eclectic group, and it’s a fascination to me to see what other writers suggest.

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When Jeff Haden asked me for my recommendations, I found I couldn’t choose a half dozen books from my shelves—because that would have left out dozens of others that I’ve loved. So I picked the best book of all, ever (might as well go out on a limb), the book I’ve read over and over and that has moved me like no other, James Salter’s novel Light Years. That’s Salter on the left. I added two other of his books, made some comments about them, and they’re all at blackbirdinc.com. You’ll find Haden’s website well worth the click.

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Coercion of Young and Old

Sunday, December 27th, 2009

A scene from the Christmas beach vacation I just took with my son and his family, including my grandson, the just-about-to-turn-two Maximo. Max, at the hotel beach, has pretty much everything he needs: food, warmth, two pools, a sandy beach with the soft waves rolling in, plus the affections of his father, his mother and two grandparents.

Max in a good mood

Max in a good mood

And still he fusses. He has entered the ancient battle of the two-year-old, common if not inevitable: a test of will that continues, intermittently, from early morning to late at night. He wants things the way he wants them: exactly the right level of care and attention from his family, particularly his mother and father, as well as access to anything he deems interesting—such as the ball or plastic fish or toy cell phone of the people near us who have left those toys lying on their unoccupied beach chairs, and which we don’t want him to play with.

So what I see from Max, right there in paradise, is lots and lots of fussing. Mainly, I supposed, it’s his age, only days from turning two. But here he is complaining to his mother, demanding and complaining. He throws his little fire trucks down on the sand—the Tonka trucks he cannot do without. His mother has had enough of this, and doesn’t pick them up. He’s testing her patience, her love, her control.

Did kids do this in 1909? In 1409? Or is it a syndrome of a society where kids have everything? I don’t remember children in the indigenous parts of Guatemala, where they grow up swaddled and strapped to their mothers’ backs, throwing little fits of will like this. Of course, they didn’t have little Tonka trucks to toss about. But at the table, did they throw their food on the ground when they didn’t like it, or wanted some attention? I don’t remember seeing that, in my many travels through Central America..

In any case, Max is now driving his mother and father crazy, so I make him an offer: “Do you want to go in the water? We could go see the waves.” I’m sure he understands this, as I gesture toward the blue sea—but his answer is “No.” He’s after something right here, and has no interest in being sidetracked.

We have arrived at the rub, at the eternal question: Do I respect what he says and drop the idea of taking him to the water? Or do I just step in dominate him, pick him up bodily and make him do what I think will make him happier? One word from his mother—Please—and he’s in my arms, squirming and crying the forty steps to the water, crying as I wade in and stand in the small waves, then crouch down with him and put his feet on the sandy bottom. I’ve done this before and I know it works, because he loves the water. He stops crying. He feels the warm water slap at him as the waves come in, swirling with sand and bits of seaweed, pushing in and sacking out again, the tug of it pulling the sand out below our feet. He’s completely absorbed.

Two pelicans come gliding by and Max says “Birdy.” I say “Pelicans,” and he says something like “Pe-cns.” He’s happy, and all his complaints are forgotten. So the lesson would seem to be: Just do what I know is best for him. Don’t pay attention to what he wants or doesn’t want, just pick him up and move him bodily to a better scene.

But what if he’s not two, but five? Can I still pick him up and remove him bodily and plunk him down in the water? I could easily handle a five-year-old. But what about a ten-year-old? That would be a hopeless battle. Even a five-year-old would understand what I was doing, and would probably resist it fiercely. With a ten-year-old, forget it.

Now think about it with a fifteen-year-old. No, no, this dominance, this coercion only works with very young children, ones who aren’t old enough yet to hold on to their wills, their resentments, their sense of outrage.

And that is what made it so difficult to make my father do what he didn’t want to. The story was not so different. He’d be sliding down into a four o’clock sundowning, feeling lost and confused and depressed. The Cape Cod beaches weren’t far away, and if I could get him in the car we’d be there in ten minutes, and his mood would change completely. I knew this, I’d seen it many times. But I couldn’t sling my father over my shoulder and plop him in the car. I couldn’t lift him up by the belt and push him toward the door. I had to persuade him, and that did not come easy. I had to press him hard, I had to go against his will, his desires, his unhappiness.

The more I decided for my ageing father, the more powerless and helpless he became. And as I decided things for him, I felt that I was reducing him, that I was treating him like a younger and younger child. My father didn’t want to go to the beach. He didn’t flail around in my arms the way Max did, but he did not want to leave the house. If I could get him out to see the sunset at Red River Beach, I knew he’d forget about his malaise and hopelessness. But the next day he wouldn’t remember any of it and would fight me all over again about going back to the ocean, or to Cape Cod Bay where we watched the ducks and the lovely sweep of the gulls.

Coercion. It’s a fascination to me—and not just with kids or parents with Alzheimer’s. We coerce people all the time. We coerce our friends. We coerce, through politics, entire groups of people. As a nation we’re constantly trying to coerce other countries to do what we deem right. All this, as I’m walking over the beach past other hotel guests in their chairs, with Max crying and twisting in my arms as if I’m torturing him, makes the whole childraising debate more interesting. Over and over, Am I doing the right thing?

All in all, I had a lovely, soft, warm vacation with my family. Santa arrived in a convertible, the Grinch rode around on a bicycle and plunged into the pool with it, canned Christmas music played on little speakers disguised as stones—and I was entranced with the willful, gorgeous Maxito, who wound up with his arms around my neck, holding me as the warm waves pushed him around, and as he gained some confidence in the miniature surf.

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The Day My Father Died

Monday, November 16th, 2009

The day my father died—November 22nd—is drawing close. By now, in 2005, he was telling me he needed to get out of here. He never told me he wanted to die, but that’s what it sounded like to me: “I need to get out of here. I have to get out of here. Help me, please, I need to get out of here. Please help me. Please, please, please help me get out of here.” Once started, he could go on like that for twenty minutes.

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He had long disliked this time of year: the trees bare, the dark coming down so early in the afternoon, the long winter stretching out before him. He loved the summertime. Actually, he got on fine with winter once it came, because spring would soon follow. It was the descent he hated, the darkness, the feel of the cold closing in on him at the start of a hard season. This had always been so—and now it was worse, for he had entered an even larger descent, equally unstoppable, into the end of life itself.

By this time, in his last month, almost nothing was left of his memory. His nouns had deserted him, his confusion was huge, and I doubt that he still knew me. But that wouldn’t have killed him had it been April or May. It was November that flattened him, that made him want to get out of here. His sundowning grew fierce: that lack of will and response that often overwhelms an Alzheimer’s patient at dusk or in the late afternoon. And dusk comes early in November. Night came early, it lay against the windows like an animal, and I think he feared it.

November is the dusk of the year, and my father responded to it with a kind of magnified sundowning. He retreated into himself, into a deep apathy, and was often unreachable. Occasionally he had one of those blazing moments in which he repeated that he had to go, that he had to get out of here, and would I please please help him. But mostly he slept, or lay in bed and stared. The year was ending, his life was ending, and he was ready to be done with it.

There are late afternoons in November when I sit in my chair and watch the day close down. Since my father’s death, even on sunny days, I’ve found this a hard time of year. I stay active, I dig my beds for next year’s tomatoes, I trnasplant some irises a friend gave me. Night comes early, and winter behind it—but of course I cope with it, as my father did every November of his life, save for that last one.

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Home vs Nursing Home

Wednesday, November 4th, 2009

Moving in with my dad on Cape Cod, as Alzheimer’s began to swallow him, wrenched me out of my own life. I left my house in Ohio, I left a town full of people I knew, I left a job renting out the houses I’d built over the previous eight years. I could still rent out the houses, but from 800 miles away I wasn’t going to be doing much maintenance.

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I moved into my father’s house and began to live his life, such as it was. For twenty-two hours a day I looked after him, and the other two I spent at the town library, a five-minute walk away. I got out to play tennis twice a week, and drove to the supermarket to buy our food—but in most ways, my old life disappeared.

Yet even during that year, I knew it was easier for me to have moved in with my father than it would be to put him in a nursing here in Ohio and go to visit him every day, or every week. Living my own life, I’d have begrudged the time it took. I know myself, and I’d have had a hard time maintaining a daily or even a weekly schedule. If I didn’t go every day, I’d feel guilty. However much time I spent with him on my visits, I’d feel guilty that I didn’t spend more.

And I’d be bored. What is there to do in a nursing home? What is there to talk about, when your father has lost his nouns and can’t complete a sentence? How many times can you tell stories out of your family past? How much can you reminisce and try to stir up his interest?

At home I fixed his meals, I gave him his showers, I took him on a drive to the ocean or later for a walk in his wheelchair along the bike path’s silky asphalt. If he had something to say, I was there to hear it. My father could sit in his lift chair for hours, saying nothing—and then, suddenly, he thought of a story he wanted to tell me, a story about the time he and some classmates smeared some hamburger on the feet of a statue in Harvard Yard and took a photo of a bulldog dressed in a Yale T-shirt, avidly licking John Harvard’s shoes.

It was a miracle, that story. A miracle that a memory like that came close to the surface, and that I could help him pull it out. I don’t think that a year in a nursing home would have drawn the two of us close. But with my father and I in the same house, as I dressed him and helped him use the toilet and took him outside to sit in the early April sunlight, we grew closer than we’d been since I was a child.

The days were long, and during them I did chores around his house. I refinished the drywall ceiling in the sunroom, I painted the kitchen cabinets, I planted some cedars by the garage. I didn’t have to just sit beside him, as I’d have been doing in the dementia ward of some home. I bought a collection of the Victory at Sea television series from NBC and we watched them together for several nights. It didn’t work, he fell asleep, I think images on the screen only confused him. But I tried something else. After dinner I read to him. I started out with books he’d have found interesting in the old days (David McCullough’s biography of John Adams, CS. Forester’s Lieutenant Hornblower), then progressed to simpler and simpler volumes: The Wind in The Willows, some Babar books, and The Tale of Peter Rabbit.

Over breakfast, over lunch, over dinner, some topic might come up. If it didn’t, I read or wrote or found something else to do. Save for the essential misery of watching my father disappear before me, it wasn’t that hard: not nearly as hard as it would have been for me to be leading two different lives. Also, I had the consolation of knowing that I was “doing the right thing.” This wasn’t a small matter. If I’d brought my father to Athens, Ohio and put him into one of the decent local homes, I’d have felt constantly that I was never doing enough for him. It was far easier for me to move into his house—the one place he wanted to be—and live his life.

I do not forget, however, that it was only for a year. What if it had been three years, or five, or ten? No, I couldn’t have done that.

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Murderers, Adulterers, The Daughters of Belial

Sunday, November 1st, 2009

Halloween in Athens, Ohio. It’s famous in these parts, a street party with some 25,000 revelers, lots of costumes, some drinking, and endless amusing interchanges. I went last night, dressed in a tuxedo I’d bought years ago for $15, with a Billionaires for Wealthcare group, carrying signs that said “If We Ain’t Broke, Don’t Fix It,” “Let Them Eat Advil,” and “Death To The Uninsured.”

Not everyone got it, and we often had to pass the word: “Satire. It’s satire.”

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This was not the kind of party my restrained father would have sought out—but I thought of him as my friends and I stood at the center of town, Court and Washington Streets, where the Christians set up camp each year, several with large wooden crosses. They preach through little bullhorns and espouse their message, sometimes of peace and love, sometimes of the harsh judgment that awaits the wicked. One large sign admonished FORNICATORS, MURDERERS, ADULTERERS, LIARS, SODOMITES and the DAUGHTERS OF BELIAL, among other sinners, that hell awaited them. And not fifteen feet away, a couple of young bucks wearing nothing but long-tailed shirts and thong underwear cavorted about, pulling up their shirts and offering their protuberant backsides for the crowd’s pleasure—mainly that of the passing young women, several of whom slapped them with clear gusto.

All this made me think about my dad?

It’s because the young can go crazy so easily, be outrageous, pull all kinds of stunts we may think of as humorous and full of life. (Well, that’s how I saw it, and I think my father would have watched both the Christians and the cavorters with some amusement.) But when the elderly—in particular those with dementia—act a third as goofy, people quickly get upset.

Of course it’s not the same. The college student is going to wake up the next morning, perhaps hungover but with her wits intact. My father, as his mind fell away from him, woke up to a state that oppressed him. He hated losing his memory, hated being confused, hated realizing that he’d said or done something that made no sense. The more aware of this he was, the unhappier he was about it. And when he was unaware, I think the sober reactions of those around him—no matter how lighthearted we tried to appear—fed his own sense of disaster.

I have some hope for the medical fight against Alzheimer’s. We haven’t come far, but thousands of researchers are hard at work on ways to slow, and perhaps even cure the disease. My greater hope, however, is in how much more attention the world now pays to dementia. When I was young it was a subject as hidden and untalked-about as cancer, menopause, teenaged sexuality and death. The more we treat it now as a common fact of life, as something that could touch any one of us, the more relaxed we’ll feel about it—and the less oppressive it will be for those who suffer from it.

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Never Dreamed of and Never Prepared For

Tuesday, October 20th, 2009

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I come from a generation that was separated from birth and death. All my grandparents, I believe, were born at home, and half of them died at home. But my father was born in a hospital, I was born in a hospital, and my son was born in a hospital. I managed to keep my father at home for his death, but only by moving in with him and living with him for a year, and by getting some help from Hospice. Otherwise, most likely, he’d have wound up like the majority of men in this country and died either in a nursing home or a hospital bed. Not what he wanted, and not what most of us say we want.

As Nancy Mairs writes on the back cover of my book, mine is “a generation who, as people live longer and longer, find themselves on a journey they never dreamed of and so never prepared for, caring for elderly parents with deteriorating health and dwindling mental faculties.”

We may never have prepared for it, but more of us are doing it. Families may be spread farther apart, but someone takes in the patient dying of cancer, someone takes in the memory- and language-impaired. And often enough, we’re there when the patient dies.

Before my father, I’d never seen anyone die. Indeed, other than the embalmed, I’d seen very few bodies: a man who fell out of a truck in El Salvador and now lay on the hot pavement, his face covered with palm fronds. Two people by the side of a mountain road in Ecuador, victims of an accident, their faces also covered. And more recently, a friend who died of cancer here in Athens, Ohio.

I doubt if having more direct experience with the dead would have prepared me for the death of my own father. But now I’ve seen it close up, and somehow it makes a difference. This is how it works for many people, I’m sure, and has worked for thousands of years: you grow up with hardly a thought for death, then your parents die and suddenly—as the author James Salter says—the way is clear for your own end.

How much my friends and I now talk about that end. Death, which philosophers and sociologists have been insisting we consider, and which we have steadily ignored, is now a daily topic. Before it seemed too distant to worry about, but now it’s all around us. Death has come back into our houses and, given that eventually it’s going to come for us, I think it’s best that we have some acquaintance with it.

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World Alzheimer’s Day

Monday, September 21st, 2009

Today is World Alzheimer’s Day, and statistics about the disease are flying around the Internet. Numbers of people suffering from dementia are growing. The cost is stunning, both in dollars and caregiving. Research on genes, brain proteins and medications has expanded hugely—but so far there is only the promise of a cure. There’s hope, but it lies somewhere in the future. Our one great advance is awareness.

My grandmother in better years, with her three daughters

My grandmother in better years, with her three daughters

Consider, less than fifty years ago, my grandmother. She had Alzheimer’s, surely, but I had never heard that word and wouldn’t for the next ten or fifteen years. We said she was senile—or more bluntly, that she’d lost her mind. My mother had put her in a home where I visited her—but only two or three times, as I soon entered the Peace Corps and left for Central America. My grandmother, I’m ashamed to say, was someone I judged as overly polite, as ridiculously proper, as altogether out of it. Now I understand how strong she had been, holding together her family in the face of an improvident and sometimes unreliable husband.

I remember going to visit her once with my mother and my aunt Barbara. We had walked some sixty feet from her room to the elevator, pressed the button, waited, entered and turned around. Before the doors closed, as we looked out on the floor she lived on, Gran said in a cheerful and determined tone, “Well, I don’t know where I am, but everything’s all right.”

At the time I thought that was an exact and pitiful summary of how she’d lived her life: always behind an emotional scrim, determined not to let her problems into the open or directly confront them. In the dismissive way of the young, especially in the late sixties, I had started to imagine the complete dismantling of a society based on archaic forms of social intercourse, among them the stiff upper lip.

Today I appreciate Gran’s fortitude, her backbone, her ability to stay cheerful through all kinds of disaster, including the loss of her mind. That day in the nursing home she didn’t know what was wrong, but she had dressed and was going out to dinner with these people, whom she may or may not have known, and she was determined that all would go well.

Awareness. If I’d had more of it, how differently I would have treated my grandmother. Or at very least, how differently I’d have thought about her.

Decades later my father began to lose his memory, his language, and eventually his concept of self. I had a label now for his condition: it was dementia, it was probably Alzheimer’s. He took a medication—Aricept—to slow its advance, but you would never have guessed that his losses were being slowed. To look at him, they were all speeding up.

By then I had a good deal more awareness about dementia, and I certainly treated my father better than I had my grandmother. But for all the research on dementia, we haven’t stopped how it tears families apart. We have some drugs which may stave off the worst symptoms for a few months. But as the statistics flow on World Alzheimer’s Day, what still matters most is how we take care of our parents or spouses or friends who suffer from this disease. Human will and warmth—with an occasional stiff upper lip when things get out of hand—are still the best we can offer.

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