John Thorndike | The Last of His Mind |

Rebecca Mead in The New Yorker

May 24th, 2013

New Yorker dementia care

Rebecca Mead, a staff writer at the New Yorker, has a persuasive piece about dementia care in the May 20th issue. The article centers on the practices of The Beatitude Campus, a retirement community in Phoenix, and it’s full of inventive ways to deal with patients suffering from Alzheimer’s and other dementias.

What struck me, just as with Jonathan Rauch’s article in the May Atlantic, is the slowly-evolving consensus that heroic medicine has little place in the care of advanced-stage dementia patients. We are trying to give some grace to scenarios that are inherently difficult and often painful, both physically and emotionally. As Mead writes, “Without any immediate prospect of a cure, advocacy groups have begun promoting ways to offer people with dementia a comfortable decline instead of imposing on them a medical model of care, which seeks to defer death through escalating interventions.”

My own experience with my father showed me how difficult it was to go against the medical juggernaut. We never want to be seen as limiting care, as doing any less for a patient than we can do. Our natural urge is to prolong the patient’s life. I wanted this for my dad—but not so much that I wanted him to suffer. By the time, near the end, when he broke down and pleaded with me, “Help me. Help me get out of here, can’t you please help me get out of here?”, repeating himself for 20 or 30 agitated minutes at a time, I knew there was no longer any role for “escalating interventions.”

I love this country for its adaptability, for how we talk about everything, for how good news can spread. When my grandmother died of Alzheimer’s in the late sixties, we were in the dark ages of dementia care. I think now we’re seeing some light.

“How Not To Die”

May 4th, 2013

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Jonathan Rauch has an excellent piece in the May Atlantic called “How Not to Die” The key to it is “unwanted treatment,” which Rauch calls “American medicine’s dark continent.”

“The U.S. medical system,” Rauch says, “was built to treat anything that might be treatable at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.”

This made me think of a friend’s father who, three weeks before his death, was subjected to a massive cranial operation. I can’t remember the hope anyone had for this operation, but it seemed a classic case of unwanted treatment. The recovery from it was brutal, and was interrupted by his death. There was little normalcy to Jack’s last days—and all, as Rauch would see it, because he and his family never had The Conversation with his doctors—a conversation that would have addressed the fact of his approaching death.

In 2009, as Rauch points out, it was Sarah Palin who “mendaciously (and effectively)” labeled such frank discussions as “death panels.” Anyone who questions medical maximalism,” Rauch continues, “risks being attacked for trying to kill grandma.”

I rode the edge of this dilemma with my father in 2005, after he fell and hit his head. Blood spilled freely because of the blood-thinning Lasix he was on, but I stanched the wound, called our Hospice nurse and eventually got him into bed.

Somehow, perhaps through his GP, my father’s cardiologist heard about the fall and demanded that I bring my father in for a CT scan, in case there was some bleeding inside his skull. But the Hospice nurse came to the house, looked Dad over and said, “The guy’s doing okay, we’re not going to take him anywhere.” After all, if they found bleeding on his brain, what could the doctors have done? Nothing my brothers and I would have accepted—and nothing my father would have wanted. Though still walking, he was 92, suffering from advanced Alzheimer’s, and extremely frail.

I understand, a cardiologist must be thorough. But to this day I bless that Hospice nurse for helping me stand up to a classic case of unwanted treatment.

Kudos to Jonathan Rauch for a trenchant article.

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Robert Olen Butler

April 11th, 2013

 

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Robert Olen Butler has come to Athens for Ohio University’s Spring Literary Festival. I’ve read a couple of his books, including the spicy and engaging novel, They Whisper, so I went in to hear his lecture on writing. He’s a dynamic, sometimes arch speaker, and clearly on top of his subject. (Next up for me, from his works, will be his 2005 book on writing, From Where You Dream.)

His talk was original and fascinating—yet what grabbed me hardest was an anecdote he told about his sixth novel, The Deuce, the story of a young runaway American-Vietnamese on the hard streets of New York. Mind, he had published five novels already, most to solid acclaim. He seemed to hit it big with The Deuce when the New York Times Book Review gave him a full page review. Scott Spencer—he of the glorious Endless Love—called Butler’s voice “marvelously convincing.” He wrote that readers would have “the distinct pleasure of watching a fine novelist as he grapples with his great subject.”

Then the kicker. This book, published by an established New York house, praised by Scott Spencer and the Times, wound up selling, according to the author, a total of “one thousand and sixty-four copies.”

Ouch.

The moral, backed up by the second speaker of the day, the novelist Bonnie Jo Campbell, is that you better write what you want, not what you think anyone else wants. That’s advice that goes down smoothly with me. I write too slowly to do anything else. I can only write a story that fascinates me. I take some story out of the Cuban Revolution and pursue it, connect it to my mother, dig down inside it. I stay happy with it for years, and eventually it’s a book.

But 1034 copies. By a great writer, Robert Olen Butler. That was kind of crushing.

 

 

Why Camilo Cienfuegos?

April 2nd, 2013

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Often I’m asked, Why this guy? Who was Camilo Cienfuegos?

Most people in the U.S. have never heard of him, but every Cuban knows his name. On January 1st, 1959, the day Batista fled the country, Fidel named Camilo the head of the Cuban Army. He didn’t choose his brother Raúl, he didn’t choose Che Guevara, he chose Camilo.

Camilo was a good fighter, and famous for his courage. But I think Fidel liked having him as a face of the Revolution because of his humble background. Camilo’s parents were tailors, they ran a little shop in Havana in their home, with a pair of sewing machines in the front room. While Fidel, Raúl, Che and almost all the other comandantes had come from the middle class and were university-educated, Camilo had never gone past the eighth grade. Fidel called him “el cubano de verdad,” meaning the true Cuban, a man of the people.

Camilo was also more relaxed, not as straight-laced as the more doctrinaire revolutionaries. Almost all the barbudos came down from the Sierra wearing beards and long hair, looking like beatniks or the saints of old—but Camilo’s beard was thicker and his hair longer than any of them. He was also the one who liked to dance and drink and tell jokes. He was not only devoted to the Revolution, he could dance the merengue.

From the start, Fidel made sure that everyone knew how vital Camilo was to the new government. On Fidel’s first night back in Havana, in the middle of a speech to the nation, he paused to ask, “Voy bien, Camilo?” Am I on the right track?

Vas bien, Fidel,” and the crowd roared.

Reading about Camilo, I was drawn to his easy charisma. Later I learned that before he joined up with Fidel he had traveled around the United States, working in restaurants and sewing shops. At one point he married an American citizen, and enlisted in the U.S. Army, though he never reported for duty. And one detail I could not resist: that he had once been a dishwasher at New York’s Waldorf-Astoria.

At the tine I read that, I’d been making notes for a novel about a woman based loosely on my mother. In the book she’s a young American photographer, and I knew she was going to wind up in Havana. Now I saw that she and Camilo could meet in New York City, that ten weeks later she would be pregnant by him, and that Immigration would sweep in and deport him.

Only three years later, at the age of 27, Camilo is one of the new leaders of Cuba. It doesn’t hurt for my story that he likes to drink and dance, or that he loves women, and that too many women love him. For fiction you load the dice, and in the case of Camilo Cienfuegos the dice were already loaded. Ten months after Fidel rose to power, Camilo disappeared on an official in-country flight, and was never seen again. For a novelist, that was perfect.

Also, I think I looked like him at that age.

Why Cuba?

March 11th, 2013

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So what’s the book about?

That’s the normal, almost inevitable question. I usually say something like, “It’s about an American photographer in Cuba in 1959 who finds out that the father of her child is not only still alive, he’s one of the leaders of Castro’s rebel army.”

Occasionally someone wants to know, Why are you writing about that? Why Cuba?

My interest goes back for decades, it’s been with me for so long I’m not even sure when it started. It might have been a couple of lively Cubans I met when I was in the Peace Corps in the late sixties. Later I read Ernesto Cardenal’s En Cuba . My Spanish was good by then, but it was an adventure all the same. Cardenal is a poet and priest from Nicaragua, and his portrait of the country was both realistic and mystical. In those days, the pure fact that Castro was paying attention to Cuba’s poor still seemed a miracle, at a time when most of Latin America was ruled by wealthy and despotic leaders.

At the same time, as I read more about Castro I could see how in love he was with his own legend. I read about Moncada, about his imprisonment, about his proselytizing and fund-raising trips to the U.S. But leave all that aside, I suggest. To see the definitive Castro, go to the core, to the act that needs no embellishment, his invasion of Cuba.

In December of 1956, in the small Mexican port of Tuxpán, 82 men boarded a cabin cruiser, the Granma, a boat that I originally read was 39 feet long. That couldn’t be right, I thought—and later I read that it was 80 feet long, or 58 feet long. Its length, in fact, is 68 feet. I’ve paced it off myself in Havana, where the Granma sits on chocks behind glass panels near the Museum of the Revolution. It’s a squat solid boat made to sleep twelve, and onto it Fidel loaded 82 men, all their guns, ammunition, food and water, plus dozens of jerry cans full of diesel fuel, because the boat’s tanks weren’t large enough to get them across the Caribbean. Once on board, the men were packed so close that few of them could lie down, and most slept sitting up.

The Granma never reached Cuba’s south shore, but rode up on a sandbar a mile from the beach. Fidel unloaded his heavier armament—bazookas and machine guns—into a dinghy, which promptly sank. The men, some holding on to their their rifles, waded chest-deep through a mangrove swamp toward the shore. It wasn’t a landing, Che said later, it was a shipwreck.

Everyone on the boat made it to solid ground, but three days later they were ambushed in a canefield by Batista’s army. Most of them were killed, a few surrendered and were executed, and only fifteen escaped into the Sierra. Fidel likes to say it was twelve—which has a ring to it, like the number of disciples—but by most accounts, fifteen. Among the survivors were Fidel, Raúl, Che and Camilo Cienfuegos. Only two years later their movement had grown so strong that they brought down Batista and his army of thirty thousand.

That original invasion, and the ultimate success of the Revolution, seems to me the most romantic story of our hemisphere—romantic, as my dictionary puts it, in the sense of “the mysterious appeal of something adventurous, heroic, or strangely beautiful.” Once I read about it, there was no going back. My book, which had begun as a love affair between a woman somewhat like my mother and a Puerto Rican, or possibly a Cuban immigrant to the U.S., now took a flip and landed in Havana.

Call It Done

March 4th, 2013

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I liked John McPhee’s last paragraph in a recent piece he wrote for The New Yorker (Jan. 14, 2013) about the structure of his articles and books:

“People often ask how I know when I’m done—not just when I’ve come to the end, but in all the drafts and revisions and substitutions of one word for another, how do I know there is no more to do? When am I done? I just know. I’m lucky that way. What I know is that I can’t do any better; someone else might do better, but that’s all I can do; so I call it done.”

Yesterday I finished the novel I’ve been writing for years. I’ve done all I can do, so call it done. Well, that’s what I thought last night—but today I hear a small voice, soft as a mourning dove in March, which tells me I could go over the manuscript one more time. Of course, that’s what I said last time, and the time before that.

When I write a book, I start out with notes. It was fifteen years ago that I made my first notes for this novel (Hundred Fires, named for one of its protagonists, the Cuban revolutionary hero Camilo Cienfuegos). With extensive notes, and with some basic and later-to-be-corrected notions about the structure of the book, I start writing. The first draft of any scene goes down fast, shotgun style, what fun. Then begin the many revisions. I’ll go over the same passage ten times, twenty times, until I get it right—which is always a moving target.

I’m never quite as sure about finishing as McPhee. I think I could always go over a book and find some small improvements to be made. For the larger changes I rely on an editor; I become so fixed on the structure I have, I’m resistant to upsetting the entire cart. But down inside the sentences, in the endlessly-debatable phrases, something will pop up that is not quite deft, not quite perfect.

Of course it’s often like Flaubert and his commas: he might spend a morning putting one in, and in the afternoon he took it out.

But after fifteen years with this book, I call it done. Next up, the really hard writing: a query letter, a synopsis, some flap copy and an author interview. Every day a thrill.

An Old Friend is Dying

September 15th, 2012

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I am in Colorado, watching my oldest friend die.

We were fifteen when we met, at an eastern boarding school. We were quickly best friends who talked about everything. We had feelings and opened up about them. Perhaps other kids at that school were telling their secrets to someone, but I never saw any evidence of it. We talked about girls and sports and girls and our families and girls and where we were going to go to college, what we wanted and what we were afraid of.

In college, during summer vacations, we worked grinding jobs in New York City, we went to France and rode around on underpowered Mobylettes, we took our first canoe trip down the Allagash in northern Maine.

We’ve had a thousand adventures since. We traveled to Greece, Turkey, Iran and Iraq. Barry quit his teaching job and started to build houses in Boulder, and from him I learned construction, and later built houses myself. We canoed the Green River (three times), the Colorado, the Rio Grande, the Pecos, the North Platte, the White, the Belle Fouche and that perfect little river, the Niobrara. A few paragraphs like this cannot begin to cover our history. We’ve known each other for 55 years, and now he is dying.

When he goes, a huge piece of my life will feel inaccessible. The years of my adolescence, especially, because the only one who really knew me then was Barry. My parents knew something—but they are now both dead. My brother was four years younger and in a different world. Barry is the one I shared those vulnerable years with, he was the one I talked to. Year after year, every time we got together we talked about Deerfield Academy and what it was like to go through adolescence there, a passage that overwhelmed us, but which seemed to be a topic no one ever addressed: the near-insanity of desire and confusion, our attraction to girls who who seemed foreign to us, exalted, devastating in their beauty and power. Only Barry knows me from those years, and without him to talk to a whole piece of my life will fall off a cliff.

His ashes will be buried in a small Colorado cemetery, and the rest of us will try to go on with our lives.

An Article And A Book

September 22nd, 2011

A provocative article about Alzheimer’s and other dementias showed up last Sunday on the Huffington Post, written by Scott Mendelson. After reading it I checked out his book at Amazon: Beyond Alzheimer’s: How to Avoid the Modern Epidemic of Dementia. I haven’t read the book, mind you—but the Product Description let me know that “the author asserts dementia is primarily the result of bad diet, stress, lack of mental and physical exercise, and other poor lifestyle choices,” and that he recommends “scientifically tested herbs, vitamins and nutraceuticals” as a way to help mitigate or delay the effects of the disease.

Against the freight-train advance of dementia, I wouldn’t want to depend on lemon balm, vitamin E and Omega-3 fatty acids. Then again, Aricept and Namenda haven’t had the best results, either. In the end, good diet, physical exercise and other lifestyle choices may well be more important than anything currently on the market.

What I perked up to in Mendelson’s article, however, was his fearless explanation of how much money we are spending on diagnosing and treating Alzheimer’s, and how little we’re getting in return. The changes that Alzheimer’s disease causes in the brain, he writes, “usually begin 15 years or more before any changes in memory and behavior are noted. Thus, by the time Alzheimer’s disease is diagnosed, the damage is done and the expensive treatments do little more than slow the pathological processes down a little.”

Even more dire is his summary of the current Alzheimer’s epidemic, coming at a time of severe economic downturn. “The country is deeply in debt,” Mendelson writes, “and government expenditures, including those for health care, must be trimmed back…. In 2005, Medicare spent $91 billion on the care and treatment of Alzheimer’s patients. By 2015, the expenditures are expected to be close to $200 billion.”

This is the kind of direct talk that few politicians will engage in. What Mendelson claims is that new medical technologies are expensive, and “we might not be able to afford them.” Though it isn’t his phrasing, we could easily be looking not at death panels, but dementia panels. In short, how much will the country be able to spend on elderly (and occasionally middle-aged) Alzheimer’s patients? Not enough, surely.

His conclusion? That “the most reasonable stance to take is not to develop evermore technically advanced and expensive means to diagnose and treat Alzheimer’s disease, but rather to assume that we are all at risk for developing Alzheimer’s disease, and that we must do what we can right now to minimize our risks for developing it.”

That’s pretty much how I look at it myself: healthy food, exercise, a good night’s sleep and so on. For now, I can’t see anything else to do in the face of what looks like an ever-increasing disaster.

The other side of the coin with Alzheimer’s is always caregiving—and let me cite a compelling memoir on the subject. It’s Come Back Early Today by Marie Marley, recently out in paperback. It is, as I’ve written before, “not an easy story—but like a gathering storm, you can’t look away from it. Marley has written a compelling, detailed, often powerful book about love, and where it takes us.”

Words

August 27th, 2011

From an early age, words were what I loved. I read early and steadily. I read children’s books, I read the magazines my father brought home for the office (he was editing Life at the time, and later American Heritage), I read Classic Comics, I read Uncle Scrooge, I read cereal boxes, I read Jules Vernes’ The Mysterious Island, I read anything and everything. I remember sitting on the toilet and needing to read something. A magazine, the back of a toothpaste tube, but something. (Have at that, you Freudian analysts.)

I’m sure it came from my father and mother, who were both writers, both editors, both great readers. They didn’t press it on me, it happened automatically. The printed word was a constant in our household, and in my dad’s later years it was no different, his house was filled with books and magazines and his own handwritten research and notes. And then, Alzheimer’s.

His aphasia (“Partial or total loss of the ability to articulate ideas or comprehend spoken or written language, resulting from damage to the brain caused by injury or disease”) came on quickly, even though he hid it from us early on, and in six months, perhaps nine, he was having a difficult time with ordinary speech. Any word might escape him, nouns in particular, and he took it hard.

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A friend of mine is now suffering from aphasia. He’s the son of two friends, actually, a big healthy 25-year-old who was recently diagnosed with a large, benign tumor in his brain. He’s had it out, and you can see that it was quite the operation, leaving quite the scar. (If I can get that photo to upload)

I went up to visit him a couple of weeks ago in Columbus, on his second trip out of the hospital. Amazingly, there he was in a restaurant parking lot, standing and smiling, his girlfriend and other family members beside him. He was lively, engaged, hungry and cheerful. His movements are all coming back to him, some more slowly than others, but his biggest problem is aphasia, the same as with my dad. Ed couldn’t get a grip on the words he wanted to use, they were all elusive. (I’m happy to say that he’s doing much better now, and that his language is slowly coming back to him.)

His predicament reminded me of my father—but there was a fundamental difference. Ed is recovering from his aphasia. There’s a good chance that his brain, that amazingly plastic and adjustable organ, will compensate and rechannel, and do whatever it takes to give him back his speech. With my father it was all the contrary. His words drew further and further away, and his spirit suffered. Whereas Ed wants to talk to people, wants to take a look at the construction project he was in charge of, wants to laugh and whisper to his girlfriend, wants to inspect and figure things out—my father didn’t want anything.

It is the downward slope of Alzheimer’s that’s so devastating. It simply crushed my father that he could no longer read or write or eventually even talk. He gave up on starting sentences, after thousands of attempts that went awry, when he could not get hold of the words he needed. With Ed, it was heartening to me to sit across from him at a Red Lobster table and see his frustration, but also his continued desire to grab hold of a word. If he got close enough, one of us might come up with what he was trying to say, and even when we said the word, his face lit up. How rich it was to even recognize the word, to get that close to it.

Alzheimer’s might pin me at the end, I guess there’s a good chance of it. (There’s too good a chance of it for everyone, if we live long enough.) In the meantime, how lovely it is to swim in this bath of words that most of us share.

Coercion Again

April 25th, 2011

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A grandfather, when visiting, might well take his grandson a present. Kids love presents. I loved it when my father brought something home from the city for my brother and me: little Matchbook cars, comic books, squirt guns. But when I flew out to Denver a few weeks ago to visit my son and his son, I didn’t take anything for Max. I had an idea, instead. A notion. A walking philosophy.

I figured I’d take Max out to the store and let him choose what he wanted. We could wander the aisles, he could look everything over and choose his own present. No imposition of my will. Adults, of course, are telling Max what to do all day and night long—and this is one of my topics: Why not let kids choose more about their lives, instead of making them into polite little martinets?

There’s plenty of this kind of thought in my book, but about the elderly. Do their caregivers really have to decide what they eat, when they eat, how they eat? Do we have to push and prod the old and infirm into the life we think is best for them? Must they socialize on a regular basis? All the old questions. I know my father did not want to be steamrollered into the world’s view of what was good for him. He had his own ideas—so I figured Max did too, and his present was to be a little adventure into non-coercive gift giving and basic empowerment.

Max is three, adorable and occasionally disastrous. He doesn’t want to ride in a car seat, tightly strapped into the back seat, but it must be done. I explain about state laws—not a persuasive argument to a young boy—and tell him there is nothing for it. Ultimately he submits, as he must do so often: no car seat, no trip to the store. Off we drive, headed to the store of my choosing, a Target on Colorado Boulevard. In ways, this is the most remarkable store I know. It’s a Super Target, so there’s an entire food section, which gives way to what looks like two or three acres of consumer goods. What amazes me are the thirty cash registers—and on a busy Saturday almost every one will be open. We are far, here, from Athens, Ohio.

Max, naturally, is in a good mood as we head inside, because we’ve come to buy something from the huge toy section. He really is a darling child. Later we’ll have a battle over what he can and cannot eat for dinner, but this morning the sun is up, we’re having fun, and both his parents are away for the weekend. (It’s the first time they’ve left Max for over twelve hours at the same time—and even now Janir is at a sales conference in San Francisco, and LL has gone to Milwaukee for a medical conference, so their only time together was passing through security at the airport.)

Father, son, grandfather at bedtime

Father, son, grandfather at bedtime

But it’s been too long since I took care of a three-year-old for any length of time (it was just at Max’s age that it became clear that I was going to be the one to raise Janir, as his mother’s schizophrenia took hold), and our trip into the store doesn’t go the way I’d thought it would. Whatever does? I had imagined us passing up and down the aisles, having fun as we looked over all the toys—but no, Max instantly sees what he wants. Some inner laser takes him straight to a little carrying case filled with cars from the Disney movie of that name, Cars.

Max has been a maniacal watcher of this video. He knows all the characters (no humans in the movie, they’re all cars, many of them quite engaging; I rather like the movie myself), and his obsession with cars and trucks and ambulances and backhoes and bulldozers is extreme. At home he must have thirty or forty small Hot Wheels cars. They’re in little truck carriers, they’re in his backpack, they’re in the kitchen, they’re in the bathtub. He goes to sleep with them. He clutches two or three of them in his fists when we go out to a restaurant. He loves his cars.

So now that’s what he wants. He makes his decision in thirty seconds: “I want that,” he says, pointing. He wants, for his present, another fifteen of these little cars, which already dot every room in his house.

So I, who had such well-intentioned plans about letting Max choose his own present, can now be seen crouching next to the boy and explaining how he already has so many of these cars, and maybe we could buy something else for a present. Look, how about this race track? That would be fun! Look how it sends the cars flying and crashing! That would be lots of fun, didn’t he think?

No. He wanted the fifteen cars in the clever little case.

Reader, I forced him. I steered and cajoled and imposed my will, and for some reason (to please me, to make me happy?) he gave in, and we went home with the racetrack with its dramatic little launcher. And in fact, I think it was the right choice, because the two of us set it up and played with it for a couple of hours—whereas the cars, I believe, would simply have joined the pile that he already had, a hoarded supply, absurd to my eyes. Yes, yes, I understand: absurd to my eyes. .

Did I learn any lessons about the ancient question? Only that coercion is a topic that never goes away. Only that I’m never sure about it with my grandson, any more than I was with my father.