John Thorndike | The Last of His Mind |

Posts Tagged ‘caregiving’

In The Here And Now

Thursday, March 31st, 2011

1298518811A great crowd last week at Janette Turner Hospital’s course in Columbia, SC, Caught In The Creative Act. Preparing for my talk there led me to think about how any good writing reflects the ways of the human mind: how difficult it is for us to focus, how rarely we can keep our thoughts to one topic, how when we listen to someone we often drift off to think of something else. Or, as the poet Howard Nemerov said,

We think obsessively about sex except
During the act, when our minds tend to wander.

The sad fact of dementia—I’m only guessing here, after watching my father and others with Alzheimer’s—is that patients can’t focus on what they wish to, on any kind of larger picture, on anything that involves language and memory. As that world retreats from them they are locked increasingly in the here and now, yet inevitably struggle with a windshear of confused memories, a drop into confusion.

Meditators want to live in the here and now. Popular psychology holds it up as a kind of ideal. But of that’s all you have, it seems to me a miserable state. I watched my father draw close to living entirely in the moment—and how he suffered.

Most novels and memoirs swing back and forth between two elements: a story unfolding in front of us, and some broader explanations and comments. Narrative and exposition, in literary terms. I imagine this feels natural to us because it’s how our minds work. It’s okay that our minds tend to wander during sex. It may not be best, but from the big laugh I got from that line at my talk in South Carolina, I figured everyone knew what Nemerov was talking about. But if our minds cannot be directed at all, if they cannot wander along some cozy paths with language and memory as handrails, we are in danger of falling off a horrendous cliff. My father fell off it. If he could have lived happily in the here and now, I’d have been much less concerned. But clearly, as I watched him, he felt it as a terrible loss.

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Miami Valley Alzheimer’s Symposium

Tuesday, November 16th, 2010

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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.

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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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A Death in the Family

Monday, September 13th, 2010

You wake up one day in mid-September, and it’s fall. It’s beautiful, the morning is crisp, the sun soon rises and pours down into the valley, lighting up the sycamores and maples and buckeyes, the yellow ragweed and the last of the ironweed. You could not ask for a more perfect day.

But it’s autumn. The tide of hot weather is going out, and like my father, I despair of it. I love the days of early fall but hate the thought of the winter to come. Lhude sing goddamn, as Pound wrote. Already I’m nostalgic for summer!

My father was exactly the same. He put up with winter, but loved the hot days of summer, the life of summer evenings. He died on November 22nd, and I think in part it was because he didn’t want to go through another winter.

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My father worked at Time when James Agee wrote for Fortune, and knew him a little. Dad didn’t read much fiction, but had great respect for Agee’s novel, A Death in the Family. I have his copy of the book, a first edition, published in 1957 after Agee’s death, and last night something pulled me across the room to my bookshelf. I had to read again, as I read every year, its prologue, titled Knoxville: Summer 1915. This was not actually part of the novel, but was added by Agee’s editors, who say they “would certainly have urged him to include it in the final draft.” It begins, famously, “We are talking now of summer evenings in Knoxville in the time that I lived there so successfully disguised to myself as a child.”

It’s a slow, evocative piece, and builds to this close:

“It has become that time of evening when people sit on their porches, rocking gently and talking gently and watching the street and the standing up into their sphere of possession of the tress, of birds’ hung havens, hangars. People go by; things go by. A horse, drawing a buggy, breaking his hollow iron music on the asphalt: a loud auto: a quiet auto: people in pairs, not in a hurry, scuffling, switching their weight of aestival body, talking casually, the taste hovering over them of vanilla, strawberry, pasteboard, and starched milk, the image upon them of lovers and horsemen, squared with clowns in hueless amber…

“Now is the night one blue dew, my father has drained, he has coiled the hose…

“On the rough wet grass of the back yard my father and mother have spread quilts. We all lie there, my mother, my father, my uncle, my aunt, and I too am lying there…. They are not talking much, and the talk is quiet, of nothing particular, of nothing at all in particular, of nothing at all. The stars are wide and alive, they seem each like a smile of great sweetness, and they seem very near. All my people are larger bodies than mine…with voices gentle and meaningless like the voices of sleeping birds. One is an artist, he is living at home. One is a musician, she is living at home. One is my mother who is good to me. By some chance, here they are, all on this earth; and who shall ever tell the sorrow of being on this earth lying on quilts, on the grass, in a summer evening, among the sounds of the night. May God bless my people, my uncle, my aunt, my mother, my good father, oh, remember them kindly in their time of trouble; and in the of hour of their taking away.

“After a little I am taken in and put to bed. Sleep, soft smiling, draws me unto her; and those receive me, who quietly treat me, as one familiar and well-beloved in that home; but will not, oh, will not, not now, not ever; but will not ever tell me who I am.”

Now is the night one blue dew, my father has coiled, he has drained the hose. What is it in this line, this single perfect line, that makes me weep? I don’t cry easiily. I wish I could, but I don’t. But I come to this line and I break into tears, I cry and cry. Who shall ever tell the sorrow, indeed. Because that boy’s father, or the father like him in the novel, is going to die. The summer will die, our fathers will die, we will no longer sit together on quilts on the rough wet grass of the back yard. Everything will be lost. Our youth, our parents, our lives. My father.

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Atul Gawande in The New Yorker

Monday, August 16th, 2010

new-yorker-cover-aug-2-2010I’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.

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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.

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Pinned Like A Bug

Sunday, August 8th, 2010

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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 sits 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.

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Idle for Hours at A Time

Wednesday, April 14th, 2010

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I’ve been on the road out West, visiting family and friends, meeting people, doing readings, talking about my father. And I find again that the topic which galvanizes an audience is always the same. It’s the question of coercion, of how much we should decide for patients with dementia.

I came across this in an Alzheimer’s Association newsletter:

“One of the complaints we commonly hear from caregivers of people with early-stage dementia is that the diagnosed person ‘doesn’t want to do anything’ or that ‘He’s just being stubborn and isn’t really trying….’ Loss of initiative and lack of motivation are two symptoms of early-stage dementia that are very difficult to overcome. If left on their own, many early-stage individuals will find it easier to give in to these symptoms and end up spending much of their days sleeping late, watching television or just being idle for hours at a time. It’s not long before they begin to withdraw socially and isolate themselves by simply staying at home.”

Loss of initiative and lack of motivation are two symptoms of early-stage dementia that are very difficult to overcome. If left on their own, many early-stage individuals will find it easier to give in to these symptoms and end up spending much of their days sleeping late, watching television or just being idle for hours at a time. It’s not long before they begin to withdraw socially and isolate themselves by simply staying at home.”

The assumption being that isolating oneself and staying at home is a bad idea.

I hear this everywhere, and I’m sure it’s often true. What do I know, perhaps it’s always true. But looking back at my father’s retreat from the world, I cannot dismiss his will, his choice, his clear desire. He may not have known what was best for him, but he knew what he wanted. He wanted to be left alone.

We’re not supposed to leave people with dementia alone, to sit and stare into space. We’re negligent if we do. Imagine an attendant or therapist in the dementia unit of a nursing home who took residents at their word and just let them be. That therapist would soon be out of a job. No, those with dementia must be urged to join the world. They must be involved, they must rise to the occasion—and in fact, the payoff is often a happier, more upbeat patient.

But it’s never black and white for me. I never stop thinking that my father should have been granted some leeway, that he deserved to be listened to, that sometimes it was better for me to simply let him sit or lie there in peace, doing nothing, not connecting to anyone. After a lifetime of rising to the occasion, didn’t he have the right to a break, and to the peace and quiet he wanted? Even if it made him unhappy?

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Marilyn

Monday, March 22nd, 2010

In two days I drive out to Colorado for a pair of readings at two of the best independent book stores in the country:

The Boulder Book Store (March 29th at 7:30), and The Tattered Cover on Colfax (March 31st at 7:30).

Then I head down to Santa Fe and read at the great Collected Works Bookstore (April 1st at 6 PM).

Three readings, all with different audiences—but I don’t like to give the same reading two nights in a row. Or ever, really. I’ve mapped out two entirely different presentations for the Colorado readings, and in Santa Fe, where I’m apt to know most of the people in the audience, I’m going to indulge myself with some passages I haven’t yet read to any group.

One of them is about the day a pulmonologist suggested that my father was probably suffering from congestive heart failure, and asked me to take him to the hospital to get an x-ray of his lungs. That led to a story I always knew I was going to tell somewhere in the book. It goes like this:

The hospital is just down the street from Pliss’s office, and Radiology takes us right away. I sit on a bench as a pretty young nurse walks my father down the corridor to the x-ray machine, giving me a glimpse of how he must appear to others: a bent old man with rundown shoulders and unruly white hair, shuffling along with six-inch steps. My father, of course, is polite to this woman, and she is friendly to him. But I doubt that she can see the young man in him. When watching other old people, I can’t do it myself. What would lead me to imagine that this old woman loved to dance the rumba, or that old man once ran the high hurdles, or that some stiff old couple once trekked through Nepal together? The older they are—and no one in the hospital looks older than my father—the harder it is to think of them as having once been young and supple and audacious.

I want to tell the young nurse about the summer day in 1955 when Marilyn Monroe showed up at our house to go waterskiing.

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1955 was a big year for Marilyn. The Seven Year Itch, her twenty-fourth movie, had just been released, along with the iconic photo of her skirt blowing up above a sidewalk vent. What legs on that dazzling blonde, and what a smile.

My father had long been friends with Milton Greene, who was both photographer and friend to Marilyn, as well as an occasional business partner. Marilyn was spending the weekend in Connecticut with Milton and his wife, and mentioned to them that she wanted to try out the new sport of waterskiing. So Milton called my dad. We lived on Long Island Sound and had a little boat, though the motor was barely strong enough to pull a skinny twelve-year-old out of the water. I was twelve and, disastrously, had gone off with a friend for the day. But Dad knew someone with a bigger boat. Charlie Goit leapt at the chance, and Milton, Marilyn and a small retinue drove over to our place.

I wish I knew, or Dad could remember, what she wore and what she said, and every little detail. All I really know is that someone had to get into the chest-deep water with Marilyn and help her with her skis and keep her from tipping over until the line drew taut. And that was my father.

Up she surged, then crashed. Charlie circled around, Dad held Marilyn, and off she went again. On the third try she skied for a hundred yards, and Charlie got to haul her into the boat. But when I came home that evening the detail I heard from friends, neighbors and family, over and over, was how Charlie had to drive while my father stood in the water with his arms around Marilyn Monroe. I think everyone liked the irony of that, because Charlie was kind of lascivious, and my father more of a gentleman

Fifty years later, walking down a hospital corridor with a pretty girl, my father has become a very old man. But he has some stories

And tonight, over dinner, I ask Dad what he remembers of that summer day in 1955. Though he can’t come up with many details, his version of the waterskiing seems pretty close to my own. He isn’t sure about the bathing suit, but yes, most likely a two-piece. I admit to leading him some. And yes, he had his arms around her. “Around her waist,” he says.

After that I can’t help teasing him. “So someone had to get in the water and help out?”

“That’s right.”

“And that person wound up being you.”

“Well, Charlie had to run the boat.”

“And before you knew it, your arms were around her waist.”

Deadpan, with only the faintest twitch of his eyebrows, “No alternative, really.”

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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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Stories from Those Who Knew My Father

Saturday, February 27th, 2010

One of the pleasures of publishing a memoir about my father is how many people write and call me with stories about him. Of course I know that he was much respected by the people he worked with. As I quote in the book, “I have never worked for a better managing editor or a nicer guy,” and “I guess it’s enough to say that, in my opinion, few have been privileged to work for a fairer person who tried to do an honest job.”

Still, it’s lovely when Ada Feyerick, who was a history-archeology editor at Horizon, tells me on the phone that my father was the best person she ever worked for, considerate and relaxed and supportive. (Ada has written a wonderfully engaging memoir herself, The Sixties: An American Family in Europe, available from Academia Books, 15 E. Hartshorn Drive, Short Hills, NJ 07078.)

Oliver Jensen and Joe Thorndike

Oliver Jensen and Joe Thorndike

Ada came to my father’s funeral service on the Cape in 2006, as did Bob Ginna. I didn’t know Bob (though I’d read plenty about him in James Salter’s memoir, Burning The Days), but he told some great stories about working with Joe Thorndike in New York.

Shirley Tomkievicz, yet another editor at Horizon, writes to me about my father and his friend Oliver: “Yes, Joe did reach out with more flair than Oliver, because for all his reserve, Joe was warmer than Oliver and not nearly so walled in. Much less conventional.”

My father was warmer than the outgoing and exuberant Oliver! Much less conventional! How I love hearing these other perspectives.

Don’t we all want this, for our parents to be remembered? It wasn’t my first goal in writing the book—I began it because of how crushing it was to watch my father’s mind disappear—but it gladdens me now to talk to these people who knew him.

And these days, to balance things out, I’m writing a novel about my mother. Only fiction can do her justice.

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