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.”

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.

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.

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

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.

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.

–A Washington Post Best Book of 2009

–A Publishers Weekly Indie Top 20 Selection

–Foreword Book of the Year award for autobiography/memoir

I’m a paperback kind of guy, myself, and appreciate the lower price.

This also comes at a good time for a talk I’ll be giving next Wednesday, the 23rd, at a course put on by the novelist Janette Turner Hospital at the University of South Carolina—a series of talks and readings, open to the public, called Caught In The Creative Act.

No, she was quite serious, and quoted some some studies about how too much sodium could lead to high blood pressure. I parried with the fact that my father took salt tablets in hot weather to replace the salt lost in perspiration—and he was in great shape. (Indeed, his heart did pretty well until he developed atrial fibrillation and then congenitive heart disease, in his early nineties.)

In any case, two or three years after that advance notice by my health-conscious girlfriend, I’d joined the big boat of salt avoiders. Today, my GP says I don’t have to worry much about it, because my blood pressure is fine. All things in moderation.

What I’m driving at is how easily we are driven by the winds of dietary and food advice. In particular, the recommendations for Alzheimer’s patients are all over the map. Don’t let him drink coffee, I was told only six years ago—yet today the wisdom seems to be that caffeine is good for those with dementia. Eat a diet rich in antioxidants has been staple advice for decades—but consider a recent article in Newsweek by Sharon Begley, who describes how we’ve long been advised to load up on antioxidants, which help to control the free radicals responisble for aging, cancer and heart disease.

“Not so fast,” says Begley. “First, studies piled up showing that taking antioxidants—even such common and seemingly innocuous ones as beta carotene and vitamins C and E—as supplements was not beneficial to health and might even be dangerous.”

Oxidants, for one thing, are the front-line defense against pathogens and cancer cells—so we may not want to squash them categorically. An assessment of 67 studies with nearly 400,000 participants concluded, “We found no evidence to support antioxidant supplements for primary or secondary prevention, [and] Vitamin A, beta-carotene, and vitamin E may increase mortality.”

Ouch.

You can read the Newsweek article and decide for yourself. My point is that we’re often lead down a path we don’t know that much about. Remember when eggs were the devil incarnate? Now researchers sing a milder tune about them: lots of benefits, as well as the concerns. What I remember, a bit shamefully, was the cogent argument I put up against the dangers of sodium. How convinced I was, and how wrong. Well, that girlfriend was right about almost everything, so I should have known.

“A moment of silence, please,” begins a review by Neil Genzlinger, “for the lost art of shutting up.”

It’s a threatening review of four new memoirs, out this week in the New York Times Book Review. Genzlinger scorches three of the four, praising only a memoir in translation from the German by Johanna Adorjan, about her grandparents’ suicide.

Of a memoir by Heather Havrilesky, Genzlinger writes, “That you had parents and a childhood does not of itself qualify you to write a memoir…. A vast majority of people used to live lives that would draw a C or D if grades were being passed out—not that they were bad lives, just bland. Now, though, practically all of us have somehow gotten the idea that we are B+ or A material; it’s the ‘if it happened to me it must be interesting’ fallacy.”

Of a memoir by Sean Manning he writes, “No one wants to relive your misery…. it’s the reader who will need a hug after choking down this orgy of self-congratulation and self-pity. That’s what happens when immature writers write memoirs: they don’t realize that an ordeal, served up without perceptive or perceptiveness, is merely an ordeal.”

Of a memoir by Allen Shawn he writes, “Imitation runs rampant in memoir land. There can’t be just one book by a bulimic or former war correspondent or spouse of an Alzheimer’s sufferer; there has to be a pile.” Shawn’s memoir, Genzlinger notes, is “stunningly tone-deaf.”

I say threatening because of my own book, which is in bed with dozens of other Alzheimer’s memoirs, probably hundreds by now. Does the world need my memoir, when there are so many others? Genzlinger’s take on the four books he reviews is, “Three of the four did not need to be written, a ratio that probably applies to all memoirs published over the last two decades.”

I take heart, however, from his final paragraph: “Maybe that’s a good rule of thumb: If you didn’t feel you were discovering something as you wrote your memoir, don’t publish it.”

Which was exactly what set me to writing The Last of His Mind. I moved in with my father, hoping, as I cared for him, to keep working on the novel I was writing. Immediately I found that what was happening to my father was more brutal, more fascinating than any fiction, and what I wrote was precisely what Genzlinger calls for: a discovery, an illumination of what Alzheimer’s was doing to my father’s mind. So I escape the scalpel, or hope so. “That’s what makes a good memoir,” Genzlinger writes, “—it’s not a regurgitation of ordinariness or ordeal, not a dart thrown desperately at a trendy topic, but a shared discovery.”

And I remember, in those first months at my father’s, nearly sinking as I watched him lose his nouns, his memories, his reason, what a salvation it was for me to read other Alzheimer’s memoirs. I read them one after another, finding consolation and community in dozens of them.

On the flights home I read a book by an Emergency Room physician and bioethicist named Robert Martensen, A Life Worth Living. I recommend it. The subtitle is “A Doctor’s Reflections on Illness in a High-Tech Era.” In other words, it’s about care toward the end of life, especially when the medical care extends lives that to many of us (perhaps from a safe distance) seem hardly worth living.

The best parts of the book, to me, were the stories of individuals facing a difficult end. Not knowing, of course, when death would come, but dealing with it and making crucial decisions about how much care they wanted.

We’ve all thought about this, haven’t we? At one end of the spectrum is that misleading line, “If I get to that state, just shoot me.” No one, as I’ve written before, is going to shoot us. At the other end of the spectrum is the bad fall we might take one day when we are deep into our own dementia. A telephone call is made by whoever is looking after us, the squad arrives and swings into their normal, predestined mode: Take care of the patient.

Martensen imagines how the death of his own father might have been prolonged (for better or worse) if the paramedics had arrived to find him unresponsive and not breathing. “Whether or not [his wife] told them of his Do Not Resuscitate status, the paramedics would likely have put in an artificial airway—an endotracheal tube—and begun ventilating him. They would have done so because he possessed vital signs—a pulse and blood pressure—and emergency field protocols specify ventilatory support when they are present, regardless of the circumstances.”

You can have your DNR tattooed on your forehead, but this will not necessarily change the paramedic practices. Then, in the ER, you will almost certainly be put on a ventilator, and admitted to the Internal Care Unit. Once the ventilator is installed, it’s not easy to get it taken out—and so the patient finds himself, if conscious of his own condition, in a state that he worked hard to avoid. Living wills and notarized DNR documents to the contrary, it’s easy to wind up in an ICU with machines extending one’s life in a way the patient had tried to prevent, back when he was hale and articulate.

Among the penetrating stories in the book is one of a doctor who is diagnosed with cancer in his forties, and who eventually withdraws from all medical treatment, feeling stronger because he has withdrawn from “the system.” He gives up Phase II cancer drug trials, he gives up repeated CAT scans to follow the progress of the cancer. The added months of life such treatment might give him—or perhaps it would only be days, or perhaps no time at all—are not worth as much to him as his own sense of empowerment and freedom.

The author cites studies that support his personal view that when it comes to late-life care, “more usually means less. Specifically, sick elderly people who endure the aggressive treatments that our “best” medical centers routinely administer near the end of their lives tend not to survive any longer than those who avoid such treatments.”

If I were diagnosed tomorrow with cancer, I’m sure I’d head straight for an oncologist and whatever treatments she recommended. But I imagine that somewhere closer to the end I’d give it up and accept my coming demise, and try to avoid the extensive, futile medical endeavors designed to keep me living another few days or weeks.

But I’m also aware that many have thought this and later changed their minds. I might too. Who can say what we’re going to do when we’re actually looking death in the eye?

A good book: Robert Martensen’s A Life Worth Living.

Yesterday, November 22nd, was the day my father died five years ago. I spent much of the day thinking about him, and woke early this morning out of a dream in which I held his frail old body in my arms.

When he died at ninety-two he could not have weighed more than a hundred and twenty pounds. He had Alzheimer’s and congestive heart failure, and shortly before the end his kidneys gave out. I’d been tending him night and day in his house on Cape Cod, and my hand was on his chest when he died. I felt his heart speed up to a hundred beats per minute, a hundred and fifty, faster and faster until—it stopped. A few minutes later I lowered one of his bed rails and climbed in with him, slid my arms around him and held onto him in the still November night.

His life was over but his body remained—and I wish my brother and I had taken care of that ourselves. Instead, after Al came down from Vermont and we spent some time beside Dad’s body, I called the funeral home I had already talked to, and they came by to pick him up.

In part we were following our father’s wishes. His own parents were interred in a cemetery in Salem, Mass., but he’d made it clear that he didn’t want to be buried. He wanted to be cremated and his ashes thrown into the Atlantic. No fuss. The least trouble for all of us. Ideally, I think, he would have preferred no service at all, or not one where people would feel obliged to make speeches. That was my father, always trying to make things easy for everyone.

But already we had strayed from his wishes. Without asking him, without telling him, we’d bought a little cremation plot at the Island Pond Cemetery, a ten-minute walk from his house. Half his ashes would be thrown in the ocean, but the other half would be buried in a small urn. I wanted a calm place where I could visit him, not just a windy beach with the waves rolling in.

The two men from the funeral home who came to pick up his body were decent guys, fathers of boys who played baseball and girls who played soccer. Community guys from the little town of Harwich. They must have thought Al and I were strange, because as they tucked our father into a black body bag for transportation, we chose to stay in the room rather than step outside—as they had suggested, twice, we might want to do.

No, our instinct was to be part of everything. It was a hard moment, I admit, when the men paused, gave us a final glimpse of Dad’s drawn face, then zipped up the bag. They wheeled the cart outside, slid the gurney off its rollers into a big SUV, and that was the last I saw of my father. They sent him up to Braintree to a cremation facility, to some roaring oven, and a week later I was given the urn holding his ashes, a marbled gray urn of dense plastic that I had chosen from a catalogue.

Less than two years after my father died, my girlfriend Jan died of lung cancer, at fifty. She’s buried in the Clarks Chapel Cemetery off a country road near our hometown of Athens, Ohio, and every six months, maybe once a year, I drive out to the cemetery with Ellen, a mutual friend. There we walk to Jan’s grave and lie down on the ground above her casket. Ellen and I slide into each other’s arms—not something we do at any other time—and lie there over Jan, crying on the grass, holding on to each other and telling Jan stories.

Lying in repose in the funeral home, Jan had not looked good. She looked waxy and rouged and unearthly in the formal coffin her family had chosen for her. At the cemetery a tractor with a sixteen-inch bucket had dug her grave—I’ve seen the tractor since, parked by the church—but by now the ground has healed, the grass has grown, and every time Ellen and I go out there together we lie on the earth above Jan’s casket. We feel her down there. She makes us talk and weep and laugh.

I wish Al and I had buried my father—but on our own, with no help from a funeral home and a cremation furnace and a marbled plastic urn. We could have buried him next to his house, close to his cedars and hydrangeas, under the lawn where he liked to play croquet. My father was good at croquet, and well into his eighties he could still beat us all. We could have have taken a couple of shovels and dug down into his lawn and made a hole big enough to put him in.

Even in the sandy soil of Cape Cod it would have been a serious job. Impossible, perhaps, with cars passing by on the street and village officials coming around to see what we were up to.

It’s a cliché from the movies, I know: the hole at the edge of the prairie, the gravediggers setting down their shovels with the job already done and the coffin ready to be lowered. It wouldn’t be like that. It would be a long hard dirty job. Once I helped bury a horse, by hand. I’ve dug plenty of trenches, and I know what it would take to make the hole big enough and deep enough. Deep enough so the animals wouldn’t get at him, so the frost wouldn’t heave him up, so someone digging a garden decades from now wouldn’t stumble on his bones.

I could have built a coffin. Not an elegant one, but serviceable, a box. I’ve built eight houses, so I could build a coffin. Or maybe just wrapped him in blankets, the way the Navajos buried their dead. But I want him now where I can lie on top of him. On a morning like this, after waking from a dream in which I have held him in my arms, I want to drive to his house on the Cape and stretch myself out on the lawn above his body. Not above his sanctioned ashes, but his whole body.

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.