John Thorndike | The Last of His Mind |

Archive for May, 2010

A Cup of Black Coffee

Monday, May 31st, 2010

I look back with some dismay at a conversation I had with my friend Sandy Weymouth, during the time I was looking after my father (it’s in the book):

“He never asks for food and never asks for water,” I said.
“How long have you waited?”
“Not very long. Sometimes he asks for a cup of black coffee.”
“Do you give it to him?”
“Decaf,” I admit. “Which isn’t what he wants, but he’s not supposed to have caffeine.”
“Says who?”
“The doctors. The pamphlets, the Internet.”
“Your father asks for a goddamn cup of coffee, give it to him. What are you protecting him from?”

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(The photo goes back to pre-dementia days: the only one I can find with him and a cup of coffee. Iced, in this case. )

My father, when I lived with him, rarely insisted on anything. He rarely even made a request—but he wanted a cup of coffee and I wouldn’t give it to him. I’d read that he shouldn’t have caffeine, should not be drinking coffee, so I gave him a cup of decaf instead.

And now what do I read, from a supplement to the Journal of Alzheimer’s Disease? That caffeine is good for patients with dementia, that it can slow their decline.

My friend Sandy had the right idea: I should have given my father what he wanted. It was the end of his life, he wanted a comforting and perhaps mildly exhilarating cup of coffee: give it to him.

I’m sure I made plenty of mistakes when looking after my dad. But for some reason, this one unnerves me out of all proportion. In five years, the official advice has changed completely—and common sense would have served me better. He wanted a cup of coffee! It wasn’t a shot of morphine, for god’s sake. Or a tablet of oxycodone, or Coumadin or Aricept or Cardura or Levoxyl, all of which I eventually gave him. It was just a cup of coffee, and I tricked him with some miserable decaf.

When something this small pulls at me so hard, I assume it stands for larger, more questionable decisions I made. Always thinking I knew best, of course—but often enough, I’m sure I was wrong.

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In The Stillness

Thursday, May 27th, 2010

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I went back to Cape Cod last week for an Alzheimer’s Memory Walk. Long trip for a short walk, but I couldn’t resist, as the walk started just a hundred yards from my father’s house in Harwich.

I’ve been back to my dad’s house—now owned by my brother—every year since my father died, in 2005. But this was the first time I’d been in the house by myself. Things happen when we’re alone. In the stillness, there’s more room for emotion. On the first night I was browsing my father’s shelves for something to read (many books, lots of choices), and paused in front of a photo of him I hadn’t looked at for a while. He’s working on the crabgrass in the lawn at our house back in Connecticut, the brimming high tide behind him—and it knocked me out. I could feel his presence in the room. As I wrote in the last paragraph of the book, I could feel “his ambition, his knowledge, his failures, his devotion.”

It all poured through me because I was alone in his quiet house. And turning around, I remembered something I’d ignored when I went into the room, something I wasn’t thinking about at all: that was the room where he died. His hospital bed was gone, of course, and all the paraphernalia of a man at the end of his life: drawsheets, bed pads, an air mattress that inflated and deflated, a humidifier, an electric heater, his medications, his Depends. The room was now clean and orderly—but just there he had lain in his bed, facing east, unmoving for the last thirty hours of his life. I went to stand exactly where he had lain. It’s a small room. I know it well, and it was exactly here that I had rested my hand on his heart as he died. I could not have been off by more than six inches. And with that the memory of him overwhelmed me.

I want to be overwhelmed sometimes. It doesn’t happen that often, and comes as a surprise. But in that room his whole life was passing through my chest.

*****

Let me add a happy note about the book. ForeWord Reviews announced yesterday at Book Expo America, the national convention of book sellers and publishers, that The Last of His Mind was ForeWord’s Best Book of the Year in the Autobiography/Memoir category. Holy cowabunga! as my publicist said at Swallow Press.

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Brutal NIH Report

Saturday, May 1st, 2010

Every day I receive an email alert about Alzheimer’s developments from http://alznews.org. A couple of days ago two contradictory messages showed up at once.

One of them was a standard-issue note about the advantages of exercise, and how it was good for the brain. So many things are supposed to be good for the brain, and by extension to hold Alzheimer’s and other dementias at bay: exercise, a good diet rich in this, that and the other thing, including supplements like gingko biloba or fish oil (lots of advice floating around about diet), continued socialization and mental stimulation, typically exemplified by the crossword puzzle (as if there were not a thousand other ways to exercise our brains).

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The second piece of news came from the National Institutes of Health, and it is news that crushes much common and comforting advice. An NIH panel, after extended study, has determined that “There is currently no evidence considered to be of even moderate scientific quality supporting the association of any modifiable factor (nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical condition, toxins, environmental exposures) with reduced risk of Alzheimer’s disease.”

In other words, we can’t say for sure that anything will help stave off or delay dementia. There’s no solid evidence that a better diet really helps. That exercise helps. That trips to a Senior Center help. That the use of prescription or non-prescription drugs will make Alzheimer’s more or less likely.

It’s a hard report that makes much of our efforts seem somewhat like voodoo. And in fact, it mirrors to me the sense of inevitability I often felt about my father even after his mind started to go.

The speed at which my father declined was so stunning that the dementia always seemed far more powerful than anything I could do to combat it. Did exercise help? The improvement in his diet after I moved in and started to cook for him? My steady presence and the socialization that implied? His decline was so marked that the best I could feel was that he might have done worse otherwise. My dad was on Aricept, but as far as I could see it had no more effect than a watercress sandwich. Of course, once again, he might have done worse without it. A single patient remains an anecdote, his story is not scientific.

Dementia is what happens to lots of older brains. There may be ways to slow down its onset and proliferation, but so far we have no solid evidence of what really works and what doesn’t. This is hard news, but it won’t change much in my life. I never did care for crossword puzzles, and I’ll keep on exercising, not smoking, eating well and staying close to my friends. It’s how my father lived, and he did make it to ninety before he dropped off the cliff of dementia.

The NIH report is at http://consensus.nih.gov/2010/alzstatement.htm

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