John Thorndike | The Last of His Mind |

Archive for November, 2009

Cheap Baby!

Wednesday, November 25th, 2009

My father kept everything. Old magazines, skis from the 1960s, a box of keys carefully labeled Unknown. But above all he kept paper: my fingerpaintings from kindergarten, hundreds of boring letters from his parents when he was a young man working in New York, clippings from magazines and newspapers, research he’d done. He must have put a lot of time into it—though as a kid I was oblivious, I never noticed him filing anything.

But I’m glad he did. Especially glad this morning, as I have discovered again the bill he kept from the LeRoy Sanitarium, a Manhattan hospital on East 61st Street, for my mother’s stay from Nov 6th (the day I was born) through Nov 20th, 1942. Two weeks of room, board and nursing care, plus charges for the delivery room, anaesthesia, circumcision and medications.

The total charge: $348.04. (For that money today, I don’t think you could cough inside a hospital, much less give birth.) Here’s the beakdown:

Room and diet for two weeks 225
Board of day nurse 30
Board of night nurse 8
Operating room 25
Delivery room and circumcision 10
Nursery 15
Anaesthesia 20
Medications 10.75
Telephone 4.29

Total: $348.04

I’ve long tried to figure out the connection between my father’s compulsive gathering of facts, artifacts, dates and stories, and the fact that all this fled from his mind once Alzheimer’s set in. My conclusion: there is no connection. Nothing one could measure or be sure of. He was a guy who loved words and history, and a guy from whom all that was taken away.

But I do have the papers.

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On The Day

Monday, November 23rd, 2009

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A blog about Alzheimer’s tends toward the somber. But life has its moments—or its entire beautiful days. Yesterday, the fourth anniversary of my father’s death, fell on the last day of the Mid-American Conference Women’s Volleyball Championship. Three years ago I spent a lot of time in my chair on this day, looking out at cold November day. I built a fire, I was still writing the book, I was swept back to the day he died.

This year I was cheering wildly and taking photographs of the Ohio University team. Hey, I understand, most people could care less about volleyball. It’s my passion, not yours. But how rich it is to have a passion, and to let my dad go for the day, because I was all wrapped up in something else. He’s the one whose first advice to my brothers and me was to follow what interests or thrills us. In effect, he was right there with me in the stands at Toledo’s SeaGate Centre.

And we won.

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Your Place in The Family of Things

Friday, November 20th, 2009

My friend Lois Gilbert quoted on Facebook these lines from the poet Mary Oliver:

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.

Which led me to the full poem, “Wild Geese” and its closing lines:

Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting,
over and over announcing your place
in the family of things.

In trying to make sense of things—my eternal job—I’ll sometimes latch onto a poem like this. Is it true? Is this how life works? Is the soft animal of our bodies the heart of life? Can the wild geese show my place in the family of things?

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Sometimes, maybe. But where was my father’s place, just a few days before he died, when he could no longer see the world, when it didn’t register with him at all? I describe a scene in the book, a rare November day I wanted him to enjoy as he lay in bed, the bed he would never rise from.

“It’s a beautiful day, almost seventy degrees, with the afternoon sun slanting in at a dramatic low angle. I open the wooden sash and the storm window beside his bed, and a light breeze pours in, the smell of leaves on the ground, songs of chickadees and thrushes. Dad takes a glance outside, a single three-second glance at the world. Then he’s done with it.”

The world lay outside his open window, the natural world he had so loved his entire life. But now he couldn’t see it, or wasn’t interested. I think Mary Oliver is right, that he was letting the soft animal of his body love what it loved—and by now what it loved, what it ached for, was to leave this life behind. His body had never been softer, more delicate, more attenuated. In the family of things his place was now on the extreme outer edge, and his body was leaving us. He could hardly tell that the world—so rich to me as I sat beside him, listening to those bird songs—had anything to do with him.

What a troubling time that was. Yet now, all I want to do is sit beside him again and let the soft animal of my body take care of his. Because in those days my own place in life was utterly clear to me, and I made complete sense of everything.

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The Day My Father Died

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.

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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.

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Agnosia and A Trip to The Dentist

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.’”

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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

“No.”

“Is it your stomach?”

“No.”

“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.

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Nursing Homes: the Endless Debate

Monday, November 9th, 2009

From my last post you can see that nursing homes are an endless point of debate for me.

nursing_homeMy father made it utterly clear, after our visit to one of his friends: Don’t ever put me in a place like that. So in fact I never did wonder about it, I just did my best to keep him at home, and managed that until the end. But yesterday morning, a discussion on my deck after a French toast breakfast with friends showed how complex the question is.

One woman, whose job is looking after the elderly, panned the nursing homes here in Athens, Ohio, even the best of them. She said she hates it—and her patients hate it—when anyone loses the battle to stay in their own house. “I just lost a patient to a nursing home this week,” she said, much as a doctor might say about one of his patients who had died.

“They’re so lost in there. The minute they go in they fall apart. They start eating that food and gain weight fast. They’re bored. They’re isolated, I can’t stand to see it. I go on working with them sometimes, but it kills me.”

She swore, as well, “I am not going to wind up in a nursing home. It’s not that I don’t want to be old, I just don’t want to be there. What we need is more connection with the elderly, not to have them isolated the way they are. I go in with a baby sometimes, with my grandson, and I’m just mobbed. They all want to be part of that, to be part of the world.”

She told a story about her travels in Nepal, when she stopped in a village and wound up, with someone who could translate for her, in a small house. “A cottage, really. It was primitive.” The grandmother was weeping and weeping, because her grandson had gone to Katmandu and hadn’t yet returned. Her children were rubbing her feet, trying to console her. “Every generation was in that room. I saw that and I thought, We’ve really lost something in our own world.”

Of course, I think: but what are we going to do? This is how we live now. My son is in Denver, my brother in Vermont, my other brother in Virginia. My father was on Cape Cod.

Even the children and siblilngs of the woman who had been to Nepal were scattered about: Tennessee, Wisconsin, Pennsylvania, Ohio. I can’t see how most of us could turn back the clock of freedom and travel and opportunity, and all come to live in the same town. Possible, but unlikely.

And there were others at that breakfast who didn’t agree about nursing homes. One friend has her step-father in a nursing home in Dayton, and it’s not all bad. There’s a community there, she finds. And it’s far easier on her mother, not to be taking care of a vastly overweight and sometimes demanding husband who gets around mainly in a wheelchair.

Also, a third woman spoke with some warmth of the assisted living/nursing home her parents moved into years ago. Again, it was the community aspect of it that worked well for them.

For me, it comes down to my own inclinations, which feel like the same as my father’s. I don’t want to live in such a place. But the time might come when I don’t have a choice, and it might be better not to load my son with burdensome responsibililties. That might be a stronger drive in me than wanting to go on living on my own. Things to think about down the line.

If the Senate can pass a healthcare bill in the next few weeks, we may see the government agreeing to pay family members to keep the elderly, and those with dementia, in their own homes, or in ours. This would save the nation plenty, and at least incline us slightly toward what we’ve lost: the interplay of generations so attractive to my friend in a small village in Afghanistan.

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Home vs Nursing Home

Wednesday, November 4th, 2009

Moving in with my dad on Cape Cod, as Alzheimer’s began to swallow him, wrenched me out of my own life. I left my house in Ohio, I left a town full of people I knew, I left a job renting out the houses I’d built over the previous eight years. I could still rent out the houses, but from 800 miles away I wasn’t going to be doing much maintenance.

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I moved into my father’s house and began to live his life, such as it was. For twenty-two hours a day I looked after him, and the other two I spent at the town library, a five-minute walk away. I got out to play tennis twice a week, and drove to the supermarket to buy our food—but in most ways, my old life disappeared.

Yet even during that year, I knew it was easier for me to have moved in with my father than it would be to put him in a nursing here in Ohio and go to visit him every day, or every week. Living my own life, I’d have begrudged the time it took. I know myself, and I’d have had a hard time maintaining a daily or even a weekly schedule. If I didn’t go every day, I’d feel guilty. However much time I spent with him on my visits, I’d feel guilty that I didn’t spend more.

And I’d be bored. What is there to do in a nursing home? What is there to talk about, when your father has lost his nouns and can’t complete a sentence? How many times can you tell stories out of your family past? How much can you reminisce and try to stir up his interest?

At home I fixed his meals, I gave him his showers, I took him on a drive to the ocean or later for a walk in his wheelchair along the bike path’s silky asphalt. If he had something to say, I was there to hear it. My father could sit in his lift chair for hours, saying nothing—and then, suddenly, he thought of a story he wanted to tell me, a story about the time he and some classmates smeared some hamburger on the feet of a statue in Harvard Yard and took a photo of a bulldog dressed in a Yale T-shirt, avidly licking John Harvard’s shoes.

It was a miracle, that story. A miracle that a memory like that came close to the surface, and that I could help him pull it out. I don’t think that a year in a nursing home would have drawn the two of us close. But with my father and I in the same house, as I dressed him and helped him use the toilet and took him outside to sit in the early April sunlight, we grew closer than we’d been since I was a child.

The days were long, and during them I did chores around his house. I refinished the drywall ceiling in the sunroom, I painted the kitchen cabinets, I planted some cedars by the garage. I didn’t have to just sit beside him, as I’d have been doing in the dementia ward of some home. I bought a collection of the Victory at Sea television series from NBC and we watched them together for several nights. It didn’t work, he fell asleep, I think images on the screen only confused him. But I tried something else. After dinner I read to him. I started out with books he’d have found interesting in the old days (David McCullough’s biography of John Adams, CS. Forester’s Lieutenant Hornblower), then progressed to simpler and simpler volumes: The Wind in The Willows, some Babar books, and The Tale of Peter Rabbit.

Over breakfast, over lunch, over dinner, some topic might come up. If it didn’t, I read or wrote or found something else to do. Save for the essential misery of watching my father disappear before me, it wasn’t that hard: not nearly as hard as it would have been for me to be leading two different lives. Also, I had the consolation of knowing that I was “doing the right thing.” This wasn’t a small matter. If I’d brought my father to Athens, Ohio and put him into one of the decent local homes, I’d have felt constantly that I was never doing enough for him. It was far easier for me to move into his house—the one place he wanted to be—and live his life.

I do not forget, however, that it was only for a year. What if it had been three years, or five, or ten? No, I couldn’t have done that.

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Murderers, Adulterers, The Daughters of Belial

Sunday, November 1st, 2009

Halloween in Athens, Ohio. It’s famous in these parts, a street party with some 25,000 revelers, lots of costumes, some drinking, and endless amusing interchanges. I went last night, dressed in a tuxedo I’d bought years ago for $15, with a Billionaires for Wealthcare group, carrying signs that said “If We Ain’t Broke, Don’t Fix It,” “Let Them Eat Advil,” and “Death To The Uninsured.”

Not everyone got it, and we often had to pass the word: “Satire. It’s satire.”

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This was not the kind of party my restrained father would have sought out—but I thought of him as my friends and I stood at the center of town, Court and Washington Streets, where the Christians set up camp each year, several with large wooden crosses. They preach through little bullhorns and espouse their message, sometimes of peace and love, sometimes of the harsh judgment that awaits the wicked. One large sign admonished FORNICATORS, MURDERERS, ADULTERERS, LIARS, SODOMITES and the DAUGHTERS OF BELIAL, among other sinners, that hell awaited them. And not fifteen feet away, a couple of young bucks wearing nothing but long-tailed shirts and thong underwear cavorted about, pulling up their shirts and offering their protuberant backsides for the crowd’s pleasure—mainly that of the passing young women, several of whom slapped them with clear gusto.

All this made me think about my dad?

It’s because the young can go crazy so easily, be outrageous, pull all kinds of stunts we may think of as humorous and full of life. (Well, that’s how I saw it, and I think my father would have watched both the Christians and the cavorters with some amusement.) But when the elderly—in particular those with dementia—act a third as goofy, people quickly get upset.

Of course it’s not the same. The college student is going to wake up the next morning, perhaps hungover but with her wits intact. My father, as his mind fell away from him, woke up to a state that oppressed him. He hated losing his memory, hated being confused, hated realizing that he’d said or done something that made no sense. The more aware of this he was, the unhappier he was about it. And when he was unaware, I think the sober reactions of those around him—no matter how lighthearted we tried to appear—fed his own sense of disaster.

I have some hope for the medical fight against Alzheimer’s. We haven’t come far, but thousands of researchers are hard at work on ways to slow, and perhaps even cure the disease. My greater hope, however, is in how much more attention the world now pays to dementia. When I was young it was a subject as hidden and untalked-about as cancer, menopause, teenaged sexuality and death. The more we treat it now as a common fact of life, as something that could touch any one of us, the more relaxed we’ll feel about it—and the less oppressive it will be for those who suffer from it.

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