Sunday, December 27th, 2009
A scene from the Christmas beach vacation I just took with my son and his family, including my grandson, the just-about-to-turn-two Maximo. Max, at the hotel beach, has pretty much everything he needs: food, warmth, two pools, a sandy beach with the soft waves rolling in, plus the affections of his father, his mother and two grandparents.
And still he fusses. He has entered the ancient battle of the two-year-old, common if not inevitable: a test of will that continues, intermittently, from early morning to late at night. He wants things the way he wants them: exactly the right level of care and attention from his family, particularly his mother and father, as well as access to anything he deems interesting—such as the ball or plastic fish or toy cell phone of the people near us who have left those toys lying on their unoccupied beach chairs, and which we don’t want him to play with.
So what I see from Max, right there in paradise, is lots and lots of fussing. Mainly, I supposed, it’s his age, only days from turning two. But here he is complaining to his mother, demanding and complaining. He throws his little fire trucks down on the sand—the Tonka trucks he cannot do without. His mother has had enough of this, and doesn’t pick them up. He’s testing her patience, her love, her control.
Did kids do this in 1909? In 1409? Or is it a syndrome of a society where kids have everything? I don’t remember children in the indigenous parts of Guatemala, where they grow up swaddled and strapped to their mothers’ backs, throwing little fits of will like this. Of course, they didn’t have little Tonka trucks to toss about. But at the table, did they throw their food on the ground when they didn’t like it, or wanted some attention? I don’t remember seeing that, in my many travels through Central America..
In any case, Max is now driving his mother and father crazy, so I make him an offer: “Do you want to go in the water? We could go see the waves.” I’m sure he understands this, as I gesture toward the blue sea—but his answer is “No.” He’s after something right here, and has no interest in being sidetracked.
We have arrived at the rub, at the eternal question: Do I respect what he says and drop the idea of taking him to the water? Or do I just step in dominate him, pick him up bodily and make him do what I think will make him happier? One word from his mother—Please—and he’s in my arms, squirming and crying the forty steps to the water, crying as I wade in and stand in the small waves, then crouch down with him and put his feet on the sandy bottom. I’ve done this before and I know it works, because he loves the water. He stops crying. He feels the warm water slap at him as the waves come in, swirling with sand and bits of seaweed, pushing in and sacking out again, the tug of it pulling the sand out below our feet. He’s completely absorbed.
Two pelicans come gliding by and Max says “Birdy.” I say “Pelicans,” and he says something like “Pe-cns.” He’s happy, and all his complaints are forgotten. So the lesson would seem to be: Just do what I know is best for him. Don’t pay attention to what he wants or doesn’t want, just pick him up and move him bodily to a better scene.
But what if he’s not two, but five? Can I still pick him up and remove him bodily and plunk him down in the water? I could easily handle a five-year-old. But what about a ten-year-old? That would be a hopeless battle. Even a five-year-old would understand what I was doing, and would probably resist it fiercely. With a ten-year-old, forget it.
Now think about it with a fifteen-year-old. No, no, this dominance, this coercion only works with very young children, ones who aren’t old enough yet to hold on to their wills, their resentments, their sense of outrage.
And that is what made it so difficult to make my father do what he didn’t want to. The story was not so different. He’d be sliding down into a four o’clock sundowning, feeling lost and confused and depressed. The Cape Cod beaches weren’t far away, and if I could get him in the car we’d be there in ten minutes, and his mood would change completely. I knew this, I’d seen it many times. But I couldn’t sling my father over my shoulder and plop him in the car. I couldn’t lift him up by the belt and push him toward the door. I had to persuade him, and that did not come easy. I had to press him hard, I had to go against his will, his desires, his unhappiness.
The more I decided for my ageing father, the more powerless and helpless he became. And as I decided things for him, I felt that I was reducing him, that I was treating him like a younger and younger child. My father didn’t want to go to the beach. He didn’t flail around in my arms the way Max did, but he did not want to leave the house. If I could get him out to see the sunset at Red River Beach, I knew he’d forget about his malaise and hopelessness. But the next day he wouldn’t remember any of it and would fight me all over again about going back to the ocean, or to Cape Cod Bay where we watched the ducks and the lovely sweep of the gulls.
Coercion. It’s a fascination to me—and not just with kids or parents with Alzheimer’s. We coerce people all the time. We coerce our friends. We coerce, through politics, entire groups of people. As a nation we’re constantly trying to coerce other countries to do what we deem right. All this, as I’m walking over the beach past other hotel guests in their chairs, with Max crying and twisting in my arms as if I’m torturing him, makes the whole childraising debate more interesting. Over and over, Am I doing the right thing?
All in all, I had a lovely, soft, warm vacation with my family. Santa arrived in a convertible, the Grinch rode around on a bicycle and plunged into the pool with it, canned Christmas music played on little speakers disguised as stones—and I was entranced with the willful, gorgeous Maxito, who wound up with his arms around my neck, holding me as the warm waves pushed him around, and as he gained some confidence in the miniature surf.
Thursday, December 17th, 2009
The Washington Post, in last Sunday’s edition, cited The Last of His Mind as one of the Best Books of 2009.
I bless their literary hearts. Carolyn See’s, really, who wrote the original review in The Post.
You can see the full list here
Tuesday, December 15th, 2009
Five months after I moved into my father’s house on Cape Cod to look after him—because he could no longer manage on his own, my brother Al came down from Vermont to stay for eight days so I could have a break. I headed back to Ohio to look after the houses I rent out, but wrote out a detailed list of jobs to take care of while I was gone.
I had quite a routine going with my father by then—and I’m kind of stunned, even now, to look back at it. This isn’t the kind of list that made it into the book, whose evolution, over the years of writing and editing, was always away from the specifics of care and into family stories and larger themes. But this is the real scoop on caregiving, the heart of the matter, the moment-by-moment and less-than-glorious daily round.
Of course I explained everything to Al before I went, but it was complex enough to set it all down in print, so he could consult it:
Itl ’s still cool enough in the mornings to turn on the heater in the bathroom in the morning; probably always will be. Be careful, though, about leaving it on when he’s in there and the door is closed: he can sit for a long time on the toilet and I think it cooks his brain.
Remember the cardinal rule: Bad things happen in the bathroom. I do leave him in there on his own, and I think there’s something comforting to him about being in there. But I keep track of him. I definitely never go off anywhere when he’s in the midst of his morning routine. When he’s just taking one of his long pisses, during the day, that’s another story.
I find I usually have to undress him these days. Otherwise he can get hung up and just wait there in the bathroom, either sitting or standing.
After his shower, if left to his own devices, he may put back on the same incontinence underwear from the day before. I try to whisk it out of sight while he’s showering.
I generally dry his ankles and feet with a towel, then the hair dryer. Then the Loprox gel with a Q-tip, between his toes.
Keep an eye on how swollen his ankles and feet are. The more they swell, the more he should sit in the lift chair with his feet raised. My basic rule has become: whenever he’s in the chair, his feet should be up. Occasional applications of Lubriderm to his ankles are a good idea.
Water available at all times: on dining room table, next to his bed, next to his chair. He likes tissues to be close by all those places as well.
He’s generally safe and secure with his walker—but this morning I took him to bloodwork, he got out of the car and onto the walker, but the asphalt there has a slight incline—and suddenly he was falling straight back. He would have gone back hard onto his head, but luckily there I was.
Often after meals (it can happen at other times, too) he shows signs of real distress. He can’t talk about it, so I’ve never figured out if it’s his mind or his stomach, or some other bodily trouble. He might sit at the table, or later in the chair, and groan with each breath. It can sound and look torturous, and I don’t know what to do or think about it. Last night he was exceptionally lost (“I don’t know what I’m doing here”), so maybe that played a role. But sometimes I think it’s his stomach acting up. Dad will basically eat everything you put in front of him, so you have to be careful. It’s great that he eats so well, but it’s possible that he’s stuffing himself and then suffering. I try to give him some ginger ale after both lunch and dinner. It might help sometimes—though how can you ever be sure?
No coffee. If he asks for a cup of “real strong coffee,” I give him a wallop of decaf—and usually he forgets all about it long before he finishes it. Alcohol is not a good idea either, and you can probably manipulate his intake down to nearly zero—if indeed he ever asks for any.
He rarely wants to go outdoors, or even into the sunroom, no matter how nice it is outside. I offer, and on occasion he takes me up on it.
If he can brush his teeth every 3-4 days, that’s a plus.
His new medication is Beconase, for swollen nasal tissues. One puff in each nostril twice a day, along with the Azmacort.
Good luck, and I’ll never be more than 15 hours away!
Wednesday, December 9th, 2009
I first read about the famous patient H.M. in David Shenk’s book The Forgetting. Shenk describes how in 1953 the well-known brain surgeon William Beecher Scoville, in an attempt to relieve his patient’s seizures, removed two sections of H..M.’s brain. The seizures abated, but with them went the ability to store any new memories. As Shenk wrote about H.M., “For the rest of his long life, he was never again able to learn a new name or face, or to remember a single new fact or thought.”
A year ago, H.M. died, and his name was revealed to the public: Henry Molaison. He had lived near Hartford, Connecticut, first with his parents and then in a home, for over fifty years. From what I’ve read he was not an unhappy person. He was much liked by those who took care of him, and by the many doctors who studied him. Even when alive, his brain became the most studied brain in history—and now, the New York Times reports, that brain has been flown across the country to a lab in California, where it will be shaved into 2500 slices, all to be analyzed minutely.
The Times reports that Dr. Scoville “suctioned out two slug-sized slivers of tissue, one from each side of the brain.” A more complete description is offered in Philip J. Hilts’ book about H.M., Memory’s Ghost: “Dr.Scoville inserted a silver straw into Mr. M.’s brain and sucked out nearly the entire grayish-pink mass of the hippocampus and the regions leading up to it. On both sides. He drew out altogether a fist-sized piece of the center of the brain.”
The hippocampus, often described as having the form of a seahorse, is a paired structure, lying in both the left and right sides of the brain, nestled deep within the temporal lobe. In early childhood, as the brain develops, the hippocampus is the last part of the brain to gain a protective myelin sheath to its neurons. It is the hippocampus that enables current thoughts and impressions to be saved as memories, and because it is so slow in maturing, few humans can remember much before the age of three.
With encroaching dementia, the hippocampus is also one of the first parts of the brain to have its myelin stripped—which is why memory loss is almost always the first sign of encroaching Alzheimer’s.
None of this can be studied in vivo, and Dr. Scoville’s operation today would raise a howl of protest. Yet much of what we know about the process of memory comes from the studies on the unfortunate Henry Molaison. He stands as a kind of ultimate dementia patient, whose short-term memories were almost entirely wiped out one day in 1953. I think about this man—only twenty-six when he became, in effect, frozen in the present. He remained part of the human family, of course. But I think of how his parents must have felt, to find that their son had disappeared, that the rich bath of memories we all depend on had been entirely stripped from him.
I look at his photo, taken years after the operation. He seems mild, congenial, benign. A little like my father, but without any edge. Because I know what happened to his brain, I find it a terrifying portrait..
Wednesday, December 2nd, 2009
A journalist, doing an interview with me today, asked among other questions if I had any regrets about the year I spent with my father as he sank under his dementia.
None came quickly out of my mouth. And that is surely true about that year. I arrived at my father’s house on December 21st, 2004, and left it, after cleaning things up following his death, on December 20th, 2005. An exactly full year. The only year—or anything longer than a couple of weeks—that I spent with him since I graduated from college. I grew frustrated and antsy at times: I can see that in the journal I kept, though now I can barely remember it save for what I wrote down. I have a few minor regrets (I forgot to tell the journalist this) about contradicting him when he was sure that people had gotten into the house and stolen things, or that Mitt Romney had come to visit and was in the refrigerator. I could have been more inventive. I could have gone to check to see if the state’s governor had actually come to call, then reported back truthfully that he wasn’t there.
But those are minor regrets, to be sure. What I would have regretted would have been not leaving my life in Ohio that year, and not going to stay with him.
All that is predictable. Who ever says they regretted spending a year with their parent or spouse or sibling? A year is short enough that the sacrifice is not that great, and there’s apt to be little time for regrets to build.
But what if it were three years, or five, or ten? Who could devote their life to someone for so long and not feel regret that too much of their own life was passing them by? I’m stunned by people who stick with it year after year, whether they are looking after someone at home or have put them in a dementia unit in a nursing home. I think of what Mary Gordon wrote in Circling My Mother, after her mother had been in a nursing home for eleven years: “My mother’s body is inexorably failing, but not fast enough. She is still more among the living than the dying, and I wonder, often, what might be the good of that.”
She writes, “The sight of her blackening teeth, now only stumps; her hair, scraped down almost to her scalp; above all the smell of her made me panic, made me want to cover my face with my hands and cry out, ‘I can’t, I can’t, I can’t do this.”
The grinding care, the pure duration of it, makes me wonder how long I could have gone on with my father. A year was easy. (Well, I didn’t think it was easy at the time, especially because I didn’t know how long it was going to be.) But to continue year after year: how do people do it? We all want to know that, don’t we? Could we do it? What are we capable of? I did it for a year, and still don’t know if I could do it for five or ten years.
Mary Gordon did have a life apart, and a good thing, too. She had her writing, and she explains, even after showing her panic around her mother, that she writes about her to witness “to the mystery of an impossible love.”
What advice, the journalist asked, would I give to others in my situation, with a parent sinking into dementia.
“Go do it for now,” I said. No one can say how long it’s going to last, or how long you can stand it. “Start now, or whenever you’re truly needed, and do it for as long as you want to, or as long as you can stand up to it.”
I know this, that there was never an minute during my time with my father that wished I’d done something else that year.