April 14th, 2010 - Uncategorized - 1 Comment
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?
March 22nd, 2010 - Uncategorized - Comment
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.
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.”
March 9th, 2010 - Uncategorized - Comment
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?
March 2nd, 2010 - Uncategorized - 1 Comment
“People keep telling us about their love affairs, when what we really want to know is how much money they make and how they manage on it.”
I came across this quote by Mignon McLaughlin in the latest Sun magazine. (McLaughlin was an editor and writer, born the same year as my father and married to an editor at Time, a guy my father surely knew.) It comes from decades ago, but how exact it is to this day. Perhaps especially in these days, when people will describe their sexual escapades down to the last inch of skin, but stay thoroughly coy about their finances.
Mignon McLaughlin
It was in reaction to this fact that I explained, in The Last of His Mind, exactly how much I was paid from my father’s bank account to look after him during the year I spent at his house. Suffice it to say that no reviewer has commented in any detail about the sexual revelations in the book, but quite a number remark on the fact that I was paid, and how much (a thousand a week, plus expenses).
I’d say we’ve come quite a distance in getting over our general shame about sex—but we’ve barely started when it comes to money.
It’s a wonderful world, really, in which one of the guys I play tennis with can tell the rest of us, in easy good humor, how his wife was giving him a blow job one morning when abruptly he was overcome by vertigo, so bad they had to call an ambulance. “I was giving him a blow job,” she explained to the squad—perhaps a relevant medical fact. In the Emergency Room, more explanations, quite loud. “By now,” he told us, “I’m sure the whole town knows.” Of course, it was a promising sexual story, not a disastrous one, and I’m glad to report that the vertigo has not returned.
It was years ago that Michelle Ajamian alerted me to what she saw as an imbalance in sexual and financial revelations. When some new boyfriend of hers wanted to hear all about her sexual past, replete with details, she’d tell him, “Okay. I’ll tell you all about that if you’ll tell me all about your money.” None of them ever did. Money, apparently, was too intimate, too delicate, too revealing.
In closing, another pair of Mignon McLaughlin quotes:
“Many who would not take the last cookie would take the last lifeboat.”
And: “People are like birds: on the wing, all beautiful; up close, all beady little eyes.”
Wish I’d known her!
February 27th, 2010 - Uncategorized - 2 Comments
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
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.
February 18th, 2010 - Uncategorized - Comment
I’d like to be obsessed with travels to distant lands, with a book on the best-seller list, with a flood of easy money or a new and sumptuous love affair. If any of this comes to me in the next few months, I promise a complete depiction.
Instead, what I keep perking up to these days are stories of death and old age, of how patients confront disease and their own mortality, of what people do in their advanced years—or simply their last years. All rather grim subjects, perhaps—but I’m long past fighting what interests me, I just follow it.
What woke me up last week were some comments by Loudon Wainwright Jr, the singer-songwriter, in an interview with Terry Gross on NPR’s Fresh Air. Loudon Wainwright Sr. worked with my father at Life, and once described my father as “a handsome, bright, reserved, efficient fellow…ambitious and proud,” and marked from the start for bigger things. So I’ve listened to Loudon Jr.’s songs with extra interest, and I was fascinated to hear what he had to say about Charlie Poole, the banjo player and leader of the North Carolina Ramblers. Wainwright’s latest album is called “High Wide & Handsome: The Charlie Poole Project”, and on Fresh Air Wainwright described the end of Poole’s life, at the age of 39. Basically, he drank himself to death.
Wikipedia puts it this way: “Poole’s life ended after a 13-week drinking bender. He had been invited to Hollywood to play background music for a film. According to some reports, he was disheartened by the slump in record sales due to the Depression. Poole never made it to Hollywood. He died of a heart attack in May 1931.”
He went out the way he wanted to live, high wide and handsome. Or one could see it that way. Perhaps it was a good deal more desperate than that—especially with that note about being disheartened, which sounds a lot like depression.
Could I just go crazy like that some day, just to stir things up? Could my father have faced his oncoming dementia with a more violent, a more exuberant response?
Probably not. We are usually so much who we are.
February 15th, 2010 - Uncategorized - Comment
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.
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.
February 12th, 2010 - Uncategorized - Comment
Here’s an interesting article from London’s Daily Mail, by the English novelist Terry Pratchett.
It begins:
“How did I get involved in the debate surrounding assisted death? It was by accident, after taking a long and, yes, informed look at my future as someone with Alzheimer’s.
As a result of my coming out about the disease after I was diagnosed at the age of 59, I have contacts in medical research circles all over the world, and I have no reason to believe a cure is imminent.
I do think, on their good advice, that there may be some interesting developments in the next couple of years, and I’m not the only one to hope for some kind of stepping stone - a treatment that will keep me going long enough for a better one to be developed.
I enjoy my life and wish to continue it for as long as I am still myself, knowing who I am and recognising my nearest and dearest.
But I know enough about the endgame to be fearful of it, despite the fact that as a wealthy man I could probably shield myself from the worst. But even the wealthy, whatever they may do, have their appointment with death.
Back in my early days as a journalist, I was told something that surprised me at the time: no one has to do what the doctor tells them.”
Pratchett goes on to claim that he won’t let the dementia he’s been diagnosed with overwhelm him, that he’ll take his own life with the time comes.
There’s the rub: when the time comes. How does one ever know? And with dementia getting abiggger and bigger foothold, one day the Alzheimer’s patient will forget about his suicide plans, so carefully thought out.
Here was my response to the Daily Mail’s online comment board:
I completely agree with Terry Pratchett about assisted suicide. But consider my father, who felt just the same. He joined the Hemlock Society, he built up a supply of sleeping pills (back when Nembutal was still available to the U.S. public). Then, at the age of 91, his memory and language left him. At some point he no longer remembered his stash of pills. He hadn’t wanted to live while bedbound, incontinent and oblivious—but that was a decision he forgot.
More than that, he wanted to live. That’s what I saw in the year I took care of him—that he didn’t want to die. When he was ready he made it clear. Eight days before his death he began to plead with me, “Please help me get out of here. Help me, I have to get out of here, can’t you help me get out of here?” But before that week he held to life.
It makes me wonder about myself. Like my father before me, I’ve made up my mind. I don’t want to live through a protracted and painful decline—and I’ve kept the pills he never used. But my guess is that no matter I feel now, when the time comes I’ll probably hold on just as tightly as he did, and far longer than I can imagine now.
February 10th, 2010 - Uncategorized - Comment
Visiting an old friend in Montreal, I am taken to visit her 91-year-old mother. She’s bent but lively, and her mind remains as fluid as ever. We speak in French, which is a trial for me, but I manage to capture most of what she says. It helps that she speaks the clearest French of anyone I know, having come originally from Bordeaux.
She lives in a nursing home that looks, on the upper floors, much like any apartment building. She receives help from physical therapists, aides and people who clean for her, and her room is bright, filled with old photos and new books, including those by President Obama, one of her heroes. (Omar Sharif is another, ever since his role in Doctor Zhivago.) All in all, especially with help from her daughter Elisabeth, she leads a pretty good life. She’s glad to see me, and I’m glad to see her.
But what stays with me after my visit is the story Elisabeth tells me of another old woman in the home, about the same age, who lives with her husband in a single room. They have been married for seventy years. And periodically, every three months or so, the woman undergoes a kind of meltdown. She takes the elevator down to the lobby and common rooms, deshabille, her clothes streaming off her, her arms raised and her voice in a roar.
‘It’s too much!” she screams in French. “Seventy years is too much! I can’t go on with this man, he’s hopeless, he’s killing me, I can’t stand it. Think of it, seventy years. No, it’s too long, a marriage should not go on so long. I need to be by myself. Is this never going to happen? Do I have to go on with him forever? He drives me crazy, some day I’m going to kill him. No, I cannot go on like this, I’m at the end of my rope. Seventy years is way too much!”
Her husband, I should point out, is completely compos mentis. Though sometimes cantankerous, he suffers from no dementia at all. Madame, it could be worse!
January 27th, 2010 - Uncategorized - 2 Comments
Each reading I do from the book brings a new set of stories.
Reading at Mac’s Backs in Cleveland a few nights ago, there were plenty of people in the audience who’d had experience with Alzheimer’s patients. I’d chosen my reading selections for the night around one subject, coercion. It’s “the topic that fascinates me,” as I say in the book, “the one I never resolve.”
In the conversations we had after the reading, two people from the audience struck a nerve for me. One was a woman who was as adamant as my friend Sandy Weymouth in the book: Why, she wanted to know, should we cajole and force dementia patients to do anything? Why not let them choose to spend their days however they wish? Why force them to socialize, force them to attend different programs, force them to eat or drink? If they don’t want to eat, why not let them find their way out of life like that?
The second woman, much younger, worked as a recreational counselor in the dementia unit of a nursing home. In other words, she was someone who spent her days coercing Alzheimer’s and other patients to stay active, to stay involved. If she didn’t urge the residents to participate, she wasn’t doing her job. She liked working in the home, but she was fully aware of how much pressure she and others in the dementia unit put on the patients, almost around the clock.
I was fascinated to hear someone suggest that we just let Alzheimer’s patients drift away into their own worlds. This is a plan few people would accept—perhaps least of all those with relatives in nursing homes. Still, there’s an inherent logic to it, even a kind of respect. As it is, we treat people with dementia as if they were infants or very young children, and to me it often looks demeaning.
I didn’t come any closer to resolving the issue, but I was glad to hear it addressed, and to hear from someone who works, as they say, in the belly of the beast. In the nursing home, every assumption is that we are in charge of those with dementia, and we must manipulate them constantly to keep them involved. Yet when looking after a single person, a relative or spouse or friend, I think it’s rarely so easily decided. Every step of their care is debatable, or should be.
More than that, the entire topic is fascinating—and it’s that fascination which can turn a grinding and repetitive chore into an adventure.
