Monday, October 18th, 2010
Alzheimer’s is an industry. Every day I receive notices of panels, commissions, double-blind drug studies, memory walks, research into tau and amyloid-b plaques. From the White House, Preparing the Nation to Better Address The Challenge of Alzheimer’s. From eurekalert, New Findings on Iron and Alzheimer’s. From reutershealth, Mental Acuity Not Linked to Calcium, Vitamin D. From USAgainstAlzheimer’s, Voters Want Congress to Make Alzheimer’s a Priority. From UCLA, Neuroscience Research May Help Patients Recover from Brain Injury.
All those, and several others, came from a single day’s reports at Alzheimer’s Daily News.
I’m glad of the seemingly-vast research being done on this disease. Even more is needed, I’m sure. As Maria Shriver and the Alzhehimer’s Foundation reported last week, “With the baby boomers entering their mid-60s, an Alzheimer’s tsunami is about to hit, with the number of people with Alzheimer’s disease expected to triple, reaching as many as 16 million by 2050.”
The devastation of the disease is vast, and so is its medical complexity. The debate rages about causes and possible cures—and every day more people tumble into the hole of memory loss, language loss and the loss of the self. And tumbling beside them are their caregivers, and they suffer as well.
Since the time I was living with my father and taking care of him, I’m sure a thousand medical studies have been done on Alzheimer’s and other dementias. Even at the time there was plenty to read on the Web—but for most hours of those days, seven days a week, I was busy with my dad. When I could, I read books. I read David Shenk’s great biography of Alzheimer’s, The Forgetting. I read pieces of the meaty, practical advice in The 36-Hour Day. I read only a little about the drug research, the trials and animal studies.
What I had to read were the personal stories of people who had been through the chaos and disaster that was engulfing both my father and me. It was memoirs I wanted. Well-written, poorly written, I tracked them down and read every one I could find.
Today there are more of them. Hundreds, perhaps thousands, now that self-publishing is so common. But those early memoirs saved my life, or so it felt. Eleanor Cooney’s Death in Slow Motion was the first, and it brought me to my knees. Then John Bayley’s exquisitely-written Iris, An Elegy. And the the most adroit of them all, with insights on every page, Aaron Alterra’s not-very-widely-known The Caregiver.
It was my response to those books that made me think I had to write my own memoir. I read and read, then I wrote and wrote.
Under Other Alzheimer’s Memoirs on the sidebar, you’ll find two dozen reviews of the books that moved me.
Tags: aaron alterra, Add new tag, alzheimer's, alzheimer's memoirs, caregiving, david shenk, death in slow motion, eleanor cooney, Iris an elegy, john bayley, maria shriver, the caregiver, the forgetting, the last of his mind
Posted in Uncategorized | No Comments »
Monday, April 19th, 2010
“There are really two kinds of life. There is, as Viri says, the one people believe you are living, and there is the other. It is this other which causes the trouble, this other we long to see.” ––James Salter, in Light Years.
I think this is what I find so electrifying about Alzheimer’s memoirs. Dementia is in a sense a dreary topic, all decline and desperation. But down in the trough we see that other life Salter talks about, the one people hide, the one they don’t want to show—and the one I long to see. Because of course some kind of breakdown is never far from any of us. It could be an oldman who turns difficult, cantankerous, even violent, as Alzheimer’s strips him—though never entirely—of his old graces.
Or the breakdown could be taking place at the other end of the ladder. With my grandson, for example. Consider the following scene, so close in spirit to the stubborn resistance and fierce will of the ninety-year-old professor mentioned above:
I was in Denver ten days ago, visiting my son and his family. Twenty-seven-month-old Max was sitting at the table, ready for dinner, which was on the stove but not quite done. Max, who is not that interested in things that will happen ten or fifteen minutes later, wanted his food now. To hold him at bay, his mother, LL, set him up with a piece of paper and a felt marker, so he could draw or scribble. But Max wasn’t interested in drawing, and quite deliberately, when we were all watching, threw the pen on the floor.
Not allowed, of course, and it drew a reprimand from both his parents. At which Max, using the back of his hand, with his eyes leveled on his mother’s, slowly pushed his plastic dinner plate off the table.
It fell with a clatter. LL lifted him onto the floor and asked him to pick it up. He would not.
“Then you can’t eat dinner. Not until you pick up the plate.”
The lines were set. I won’t describe the prolonged battle in detail: every outburst, every crumple to the floor, every claim that he had to use the potty, that he had hurt himself, that he was desperate for food. Affection was not withheld. Both Janir and LL picked him up several times and hugged him and told him they loved him—but he had to pick up the plate. Which was the one thing he absolutely would not do.
A timeout on the stairs wouldn’t work. They knew from experience that he would simply climb down. They could have locked him in his room and let him bang his head against the door, resoundingly—but their interest was to have him pick up the plate. One simple act. Not of contrition, just the pure act of picking up the plate he had brushed off the table.
He wouldn’t do it. The strength, the depth of his refusal was epic. It went on for an hour, during which the meal was served and the adults ate. I’d say that overall, Max was winning. We were all still talking about the plate, rather repeatedly, and he was not picking it up.
Invention. It’s no less important for parents (or for the caregiver of someone with Alzheimer’s) than it is for a Picasso or Flaubert. Or so it seems to me. A truly creative person is the one who can find a way out of a knock-down, drag-out battle with a two-year-old. And that night the one who saved us was Janir, who finally suggested, like a general avoiding an outright rout, “Max, how about we go up and take a bath?”
Ten minutes later I went up to see them, and Max was his usual happy self in the tub, playing with his toys and splashing around.
When they came down, with Max in his nightsuit, there came the awkward moment. Dinner was ready for Max, but first—and here Janir squatted down with him on the floor, making it as easy as possible—he had to pick up the plate. There was a terrible hesitation. Would he dive back into his apocalyptic refusal? Instead he bent, picked up the plate and gave it to his father. The adults all applauded him and told him how happy we were—and so ended another near-Armageddon.
Oh yes, that other life, the one we long to see. Often we have the ideal, gorgeous child, laughing and entertaining himself. And sometimes we have this other, the one that causes the trouble.
Monday, November 16th, 2009
The day my father died—November 22nd—is drawing close. By now, in 2005, he was telling me he needed to get out of here. He never told me he wanted to die, but that’s what it sounded like to me: “I need to get out of here. I have to get out of here. Help me, please, I need to get out of here. Please help me. Please, please, please help me get out of here.” Once started, he could go on like that for twenty minutes.
He had long disliked this time of year: the trees bare, the dark coming down so early in the afternoon, the long winter stretching out before him. He loved the summertime. Actually, he got on fine with winter once it came, because spring would soon follow. It was the descent he hated, the darkness, the feel of the cold closing in on him at the start of a hard season. This had always been so—and now it was worse, for he had entered an even larger descent, equally unstoppable, into the end of life itself.
By this time, in his last month, almost nothing was left of his memory. His nouns had deserted him, his confusion was huge, and I doubt that he still knew me. But that wouldn’t have killed him had it been April or May. It was November that flattened him, that made him want to get out of here. His sundowning grew fierce: that lack of will and response that often overwhelms an Alzheimer’s patient at dusk or in the late afternoon. And dusk comes early in November. Night came early, it lay against the windows like an animal, and I think he feared it.
November is the dusk of the year, and my father responded to it with a kind of magnified sundowning. He retreated into himself, into a deep apathy, and was often unreachable. Occasionally he had one of those blazing moments in which he repeated that he had to go, that he had to get out of here, and would I please please help him. But mostly he slept, or lay in bed and stared. The year was ending, his life was ending, and he was ready to be done with it.
There are late afternoons in November when I sit in my chair and watch the day close down. Since my father’s death, even on sunny days, I’ve found this a hard time of year. I stay active, I dig my beds for next year’s tomatoes, I trnasplant some irises a friend gave me. Night comes early, and winter behind it—but of course I cope with it, as my father did every November of his life, save for that last one.
Wednesday, November 11th, 2009
I’ve read a lot of Alzheimer’s books—and you’ll find more than twenty of them described at some length in the Sidebar section to the right, under Other Alzheimer’s Memoirs.
I know I’d have done a better job with my father if I’d read some of these books when he was alive and suffering. This quote, for example, from Sue Miller’s book The Story of My Father, might have enlightened me in the early days of my dad’s dementia: “I didn’t know then that aggression and disruptive behavior are often signs of physical discomfort in Alzheimer’s patients. Now that I do, I suspect my father was in pain during these episodes, but that he himself had no understanding of this in a conventional sense and certainly no way to say, ‘I hurt.’”
I kind of understand that now. At least I understand the effect of it. But for someone not to connect to their own pain, not to know they are suffering from it, shows how far they can be taken into a world utterly foreign to the rest of us. I think today of how I would take my father to the dentist to have his teeth worked on. They were old teeth and falling apart, and the dentist and I had to make some nuanced decisions about how much work was necessary, and how much could be left until later. Meaning, really, how much shouldn’t be done now, because my father was likely to die sometime soon. But I surely didn’t understand what was going on when the dentist reported to me that my father didn’t want any lidocaine when his teeth were being drilled. At his own request, he had the drilling done without any anesthetic. “I don’t need it,” was all he said when I asked him about it on the drive home.
At the time, I thought this lay in the category of my father’s cold showers. Not entirely cold, just at the end. At the age of 91 he told me that all his life he had ended his showers by turning off the hot water and letting the cold pour down for fifteen or twenty seconds. He named someone famous who used to do this—was it Winston Churchill? I can’t remember. For a few days I tried it myself, and found it invigorating indeed. Then I let the practice slide. My father was so disciplined, I thought.
Discipline probably had little to do with it after his agnosia developed. Agnosia, common among dementia patients, is “the failure to understand the source or meaning of pain.” Consider this scene I described in my book, from half way through the year I spent with my father:
After his dinner, he sits across from me sinking fast. His eyes are closed, he’s having trouble with his stomach or chest, or possibly it’s his throat, and every ten seconds he grunts quietly. His fists are raised to the edge of the table, and his head tilted back. He holds his breath, lets it out with a moan, breathes in, holds it, grunts again. His face is contorted, yet when I ask if something is bothering him he says no. No pain, he says, no problem of any kind. His face radiates misery but there’s nothing wrong. He goes back to his steady grunting.
Later, as he lies on his bed, the grunting persists. Again, because I can’t stand it, I try to figure out what’s bothering him. “Is it your chest? I ask
“Is it your stomach?”
“Can you put your hand where it doesn’t feel good?”
For a long time, nothing. Finally he lifts his bony right hand and touches his thumb to his pinkie, the one he can’t fully extend. “It’s here.”
“You mean that’s what’s bothering you, your finger?”
“It’s not really bothering me, I’m just aware of it.”
You can see how hard it was to figure out what was wrong, what hurt him and how much—because he hardly knew himself. His pinkie was probably not what was bothering him, but I couldn’t figure out what was, because he didn’t know. There is plenty of odd behavior in Alzheimer’s patients, but the more I read about it, the more I see that there are reasons behind every behavior, and that none of it is truly strange.