John Thorndike | The Last of His Mind |

Archive for October, 2009

Lost Car

Thursday, October 29th, 2009

I was talking with a friend from Minneapolis. (I’ve had many emails, letters and phone calls recently, having sent out post cards to 200 friends about the publication of the book.) She told me a story she hadn’t told anyone yet, not even her husband, about something that happened last week in a mall parking lot. I daresay most of us have experienced this: she couldn’t find her car.

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She wasn’t lost, but her car was. She couldn’t remember where she had left it, didn’t know if it was to the left or right. The lot was vast, there were hundreds of cars, perhaps many hundreds. But she had come out the door she went in and should have known where her car was. She started walking, up one row and down another. She stopped, she looked around, she grew more disoriented.

This friend, like several people I know—it’s also true for me—has Alzheimer’s on both sides of her family. Her mother has it now, and her father’s father died years ago of “senility.” She’s only 57, but terrified at the idea that she could be showing signs of the disease herself. Her heartbeat went up as she walked through the lot. It was a sea of cars and she walked along the rows, pretending that she knew where she was headed. With each row she grew more disoriented. Had she looked here before? She felt anxious, almost panicked.

Her grandfather had only been in his sixties when it started. In the end her parents went alone to see him, because he had moments of unexpected violence. Was that what she was starting now? Was this a sign? She had no memory of parking the car, no memory of getting out of it and walking inside. Maybe she’d just been distracted—but the thought that her mind could betray her was terrifying. Suddenly she was sobbing. A car came by, she turned her back, she was ashamed and scared.

A few more cars, and she didn’t move. Finally a woman stopped, a woman and her teenaged daughter. “Are you okay?”

Women, I think, as I listen to this story: the caretakers of the world. I spent a full year looking after my father—but would I have stopped at the sight of a woman standing alone and possibly distraught, turning her back to me as I drove by? A woman who might not want to be talked to by some stranger in his car? I don’t think so.

But at the other woman’s question my friend broke down completely, crying openly and trying to explain what had happened. “Come,” the woman said. “Get in, we’ll drive around and find your car. What kind of car is it?”

A green Suburu Outback. There were several, but eventually they found the right one. My friend thanked the woman and her daughter, thanked them repeatedly and assured them she could drive and would be fine—but after they left she sat behind the wheel of her car and ran it all over in her mind. She could see the entrance to the mall. It was so simple: she’d gotten out here and walked to there. How could she not remember that when she came out again?

There had been similar incidents with her mother—but much later, when she was in her seventies. Now, in her eighties, she was in a nursing home. “I’m too young for that,” my friend told me over the phone. “Don’t you think?”

I didn’t say what we both knew, that it could start at any age. I told her instead how I’d once lost my own car in the Kroger’s lot.

“For how long?”

“About twenty seconds,” I admitted.

“I can’t tell Frank.”

“If it happens again, you should tell him.”

“I’m never going to park in that lot again. Of if I do I’m going to cheat and use a handicapped space.”

“You could forget that, you know. But probably it won’t happen again.”

By the end of the call we were laughing at the absurdity of it, the craziness, the way it looms above us. She’d been fine ever since. But one thing she wasn’t going to forget: the pure fear of what it could mean.

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Just Shoot Her

Tuesday, October 27th, 2009

On Cape Cod last summer I had dinner with an old friend whose father no longer recognizes her.

What a world, in a single sentence.

Vivian—to give her a name that’s not her own—has been dealing with this painful situation for years.  She can’t say that she wishes her father were dead. Who of us could be so blunt? But how much simpler and less heartbreaking it would have been if he hadn’t been treated for pneumonia some years ago, and he could have died before falling so deeply into the well of dementia: from which he now peers out, slumped, nodding, vacant. His memories have vanished, and most of his language. His “quality of life” looks to Vivian like close to zero.

Jack Kevorkian

Jack Kevorkian

Yet she can’t imagine helping her father to die. She just couldn’t do it. No matter that it would be easier on her mother, easier on Vivian and her siblings, easier on everyone if he were to die tomorrow. Easier on her father, even, she imagines—though who can say for sure about that?

What she knows absolutely is that she doesn’t want to subject her husband or her son to the ordeal of looking after her if she follows in her father’s footsteps. She thinks about this all the time. She wouldn’t want them to spend their savings on keeping her alive in some home, nodding in her chair, her head twisted back, barely able to speak, remembering nothing. She wouldn’t want them to tear apart their lives to take care of her, year after year.

She truly doesn’t want this. She would rather die. But how? Many of us have faced this question. We may have said to family or friends, “Just shoot me.” But we don’t think it through—because there would be too many obstacles. No one is going to get a gun and literally pull the trigger. What friend, or son, or husband, is going to put a pillow over the mouth of the one suffering, no matter how lost and miserable they are? Well, I’m sure people have done it.

The point I take from all this—at least here at a “safe” distance from my own likely deterioration—is how most of us feel the same. We won’t want this. We can’t quite say that it would be better for a family member or spouse to die now—but we can say, with conviction, that we don’t want any part of it for ourselves.

Jack Kevorkian may have gone to jail for eight years, Oregon assisted-suicide laws may be far too strict to help out someone who has sunk into dementia in Massachusetts, and we may all be reasonably fearful of an ambitious DA should we find a way to help our loved ones die. But from everything I hear from my friends—especially from those who can see the end looming, with its terrible trials—I think the conversation on assisted deaths is just beginning.

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“I Don’t Think I Have Alzheimer’s”

Monday, October 26th, 2009

Early this morning I woke up out of a dream.

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I understand that there’s little more boring than someone else’s dream—but stick with me for just a minute. I’m with my son, who’s four. I get on an elevator, my arms loaded wth suitcases, and he fails to get on. I don’t panic, he’s a smart kid and I’ll come back and get him. But on the way down the elevator turns into a bus and drops me a couple of blocks away.

Now I’m worried. And worse, I don’t recognize where I am. I walk here, I head there, I have to get back to my son. But I can’t, because I’m lost—and even in the dream I know that I’m experiencing the first signs of Alzheimer’s.

My father, a learned guy who I’m sure knew plenty about Alzheimer’s and dementia, only once mentioned the word—and then it was to say “I don’t think I have Alzheimer’s.” He kept it, as he did so many emotional topics, at a distance. But I, in the dream, am both aware of the disease and the fact that I’m showing its first symptoms. And I’m wildly emotional: both because I’ve lost my son and because of what I know is going to happen to me. I weep openly, first to some strangers, then to a pair of policemen. My boy is okay, they tell me, they’ve found him—but now I understand that I have entered the path of this terrible disease.

Consider the irony that only four days ago, in my last post, I announced, “I’m fatalistic about the disease.”

Who is a fatalistic in a dream? The panic of it lasts right into consciousness, as I emerge from sleep. And I understand—I feel, in the ultra-real way of dreams—how miserable my father must have been to know his mind was going. To forget everything, to walk around and have no idea where he was. My father’s instinct was to hide his panic, not to let anyone else see it or suffer from it. But now, in a dream, I’ve come closer than ever before to knowng how he must have actually felt about it. This horrible disease, this waking nightmare.

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Football and Dementia

Saturday, October 24th, 2009

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In the October 19th New Yorker Malcolm Gladwell has a piece about dog fighting, pro football and dementia. The most interesting part of it, to me, is how the constant pounding experienced by football players—particularly offensive and defensive linemen, who tend to hit another player, or be hit, on almost every play—results in damage to the brain. A spectacular spinal case comes to light immediately, with a player removed from the game on a stretcher, sometimes never to walk again. The adverse effects on the brain are usually more subtle, and for every outright concussion, Gladwell reports, there may be hundreds or thousands of head-to-head collisions, all of which may be taking a toll on the brain.

Gladwell quotes a report I read in the Times three weeks ago, of a phone survey funded by the NFL of a thousand retired players: “Self-reported studies are notoriously unreliable instruments, but, even so, the results were alarming. Of those players who were older than fifty, 6.1 per cent reported that they had received a diagnosis of ‘dementia, Alzheimer’s disease, or other memory-related disease.’ That’s five times higher than the national average. For players between the ages of thirty and forty-nine, the reported rate was nineteen times the national average.”

With dementia such a burgeoning problem, all kinds of studies are being done on contributing factors. I receive an email every day from the Alzheimer’s Daily News , and in recent months I’ve read about studies on the links between Alzheimer’s and coffee, obesity, testosterone, pesticides, the common cold, chemotherapy, exercise, the Mediterranean diet, bypass surgery, stress, early language skills and socioeconomic status-—among many others.

It seems an intimidating job, to figure out what activities and substances should truly be avoided. What can I say? I’m glad I didn’t play football. But I’ve knocked my head against a couple of trees while skiing, and had a concussion off a sled when ten—who of us other than the worst couch potato hasn’t banged ourselves around over the years?

I’m fatalistic about the disease. My father had it, my mother’s mother had it, so it’s on both sides of my family. I’ll try even harder not to bang my head—but I already had that in mind. I’ll read, I’ll write, I’ll limit my television, that will be easy—except for an occasional college football game. I love college ball, and I doubt if they’re going to stop playing it any time soon.

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Letting Nature Take Its Course

Thursday, October 22nd, 2009

It seems to me that much has been written about the over-care of dementia patients: how they are subjected to exhausting and sometimes invasive medical care, when such attention is not only not helpful, but detrimental to the patient.

But little seems to have changed on this score, according to an October 20th article in the New York Times.

As Tara Parker-Pope, the author of the article, puts it, “The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. A new study suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as a progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.”

These “distressing interventions,” as the study’s lead researcher put it, can lead to an over-emphasis on medical heroics, and not enough on palliative care.

I saw this directly with my father. He was in his bedroom one day, only fifteen feet away from where I sat in the dining room—which was too far for me to stop him—and moving around on the same walker as in the photo in the post below. I suppose I shouldn’t have let him out of my sight, but the day is long. The day and night: it was after dinner. I heard a crash and ran in to find him on the floor, blood pouring out of a gash near his temple.

The fall was traumatic and shook up both of us—but in the end I stanched the blood flow and hauled him up onto his bed. I bandaged him, made him comfortable for the night, and a Hospice nurse came to check on him the next day.

Looking back on it, I see that my father’s slide accelerated after that fall. But there was little to be done about it, in my eyes or Hospice’s. Thus, it surprised me when his cardiologist’s assistant called, having heard about the fall from my dad’s GP. The cardiologist wanted my father to come in for a brain scan, post haste. He was worried that such a fall could cause bleeeding in his brain, which would be serious indeed.

But what were they going to do? Open up his skull and release the pressure? My dad, it turned out, was a couple of months away from dying, from dementia and its complications. What a misery it would have been, for everyone, for him to have undergone a major brain surgery at that stage.

I don’t blame the cardiologist, really. He was doing his job, doing his best to prolong life. I’m just glad that the Hospice nurse was on my side. “The guy’s doing okay,” she said. “We’re not going to take him anywhere.”

I knew the father of a friend here in my hometown who was also nearing death. The doctors found it necessary to go into his skull—I can’t remember exactly why. He spent the last three weeks of his life recovering from an extremely traumatic surgery, and then he died, the hair on his head barely starting to grow back.

No matter how well-meaning the doctors were, this led to a miserable last three weeks of life for a lovely old guy. Even the doctors know it, and some will manage “to let nature take its course,” as they say. But others, it seems, are still tied to the wheel of Anything to save the patient.

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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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Buzzing with Life

Saturday, October 10th, 2009

David Shenk

David Shenk

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.”

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I Bow Down Before It

Wednesday, October 7th, 2009

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To let people know about the memoir, I’ve sent a post card to a couple of hundred people in my address book, some of them friends I haven’t talked to in years.

Back comes a heartrending story.

I knew Bruce and Diana in Boulder, years ago, when my son and their two daughters were in the same ski program. They were, I always thought, the epitome of the stable couple. But after 25 years of marriage, Diana began to act strangely. She pulled away from her husband, she spent money with abandon, she was hyperactive and compulsive—and eventually they split up, with Bruce moving to Maryland and starting a new job.

I’ll bet this shocked some people. But this part of the story reminds me of the years in which schizophrenia was rising in my wife. Clarisa was slowly being overtaken by a disease, but what I saw—what I felt—was that she no longer loved me. The recognition of mental illness and dementia often lags behind the conflict, behind the resentment and confusion and heartache stirred up by new and strange behaviors.

Bruce was always a responsible guy, yet he moved away from his wife, who had apparently lost interest in him. I understand it completely, for it must have seemed to him that she no longer wanted to be married to him. In fact, Diana was being overtaken by frontotemporal dementia, often known as Pick’s Disease. Bruce returned to Colorado, consulted specialists, a diagnosis was made, and he settled in with his erratic and increasingly distant wife—and took care of her at home for the next four and a half years.

A story like this does not roll off my back. I’m stunned by it, I bow down before it. Three years, five years, ten years: it’s incredible what people go through. Diana had made it clear that she did not want to go into a nursing home, and as Bruce took care of her she became “emotionally flatlined.” Eventually she lost all ability to express her thoughts, and in the last year was entirely mute.

I took care of my father for only a year. Still, it was a year in which I had to put my own life in a box, and a year seemed plenty long: at times it seemed endless. But four and a half years.

My refrain is the same, that these stories are everywhere. I didn’t notice them, or paid little attention to them, until I entered the world of dementia. And then I heard them all the time. I’m a writer, so I turned my own story into a book. But all around me—around all of us, especially as we get older—lie these stories. I may have turned a bit compulsive about them: I’m drawn to them, I want to hear them, I can’t turn my back on them or carry on as if I’m in a safe and separate world from them.

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Everyone Raised A Hand

Sunday, October 4th, 2009

Swallow Press, bless their collective hearts, sent 240 copies of The Last of His Mind to the Great Lakes Independent Booksellers convention. I drove up to Cleveland on Friday, stationed myself at a desk between novelists Dan Chaon and Patrick Taylor, and used my Rotring Art Pen to sign the 240 copies.

They went to bookstore owners and buyers in Ohio, Indiana, Illinois, West Virginia, Kentucky, Wisconsin and other states. My area, more or less. The idea is old-fashioned: give the book to community booksellers who will read all or part of it, and hand-sell it to their customers.

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With a couple of hundred new books being published in the U.S. every day, there is a river of titles for bookstore owners to keep up with. Putting a signed copy of my book in their hands is a good way to win their attention. I also rotated through three tables (the courses of the meal at Friday night’s “Writers’ Feast”), where I explained how I came to write the book, and talked about my father and his decline. I showed them a couple of 20-inch photos I’d had blown up onto foamcore: my father at 33 when he was the Managing Editor of Life, glowing and handsome, and a difficult photo of him at 92, confused and withdrawn.

 

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At my final table of the night, over desert, I could see how attentive the bookstore people were. They had comments, they nodded, a couple of them stopped eating. And when I asked how many of them had some experience with an Alzheimer’s patient, everyone at the table raised a hand.

Everyone. Some were caring for a parent with dementia, others had helped out with a neighbor, one woman was worried about a brother whose memory seemed to be going. That’s how it’s getting to be these days: the problem is everywhere.

I wrote this book, as I write every book, with my head down. I can’t think about selling a book when I’m writing it. I have to go down into the world I’m describing and let a kind of membrane grow over me and shut out the rest of the world. But these days I’m not writing, I’m selling. And I don’t mind it. I like it, actually. I like explaining the book, and I really like explaining it to booksellers. There’s a time to write, and a time to get a little movida going, a little buzz. That’s my job for now, with some solid help from Swallow Press.

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Reading Disorder

Friday, October 2nd, 2009

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I head up to Cleveland today for the convention of the Great Lakes Independent Booksellers Association. Generally I’m allergic to big conventions: days spent indoors in some big manicured facility with no windows. But communing with a couple of hundred bookstore owners and buyers is another matter: they’ll all have the same reading disorder I do—which is to say that they will all be compulsive and devoted readers. I’ve been to several big bookstore conventions, and they are comforting down to my bones. You couldn’t find a more engaging group of people in the nation.

For my last book I toured for months in my van, read at 35 independent bookstores, and stopped by to introduce myself (and occasionally sign books) at 150 others. It was a great way to meet those bookstore owners and buyers and sales people—and going to a convention full of them is like mainlining the connection. I’ll report on the details.

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