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.
Wednesday, April 14th, 2010
I’ve been on the road out West, visiting family and friends, meeting people, doing readings, talking about my father. And I find again that the topic which galvanizes an audience is always the same. It’s the question of coercion, of how much we should decide for patients with dementia.
I came across this in an Alzheimer’s Association newsletter:
“One of the complaints we commonly hear from caregivers of people with early-stage dementia is that the diagnosed person ‘doesn’t want to do anything’ or that ‘He’s just being stubborn and isn’t really trying….’ Loss of initiative and lack of motivation are two symptoms of early-stage dementia that are very difficult to overcome. If left on their own, many early-stage individuals will find it easier to give in to these symptoms and end up spending much of their days sleeping late, watching television or just being idle for hours at a time. It’s not long before they begin to withdraw socially and isolate themselves by simply staying at home.”
Loss of initiative and lack of motivation are two symptoms of early-stage dementia that are very difficult to overcome. If left on their own, many early-stage individuals will find it easier to give in to these symptoms and end up spending much of their days sleeping late, watching television or just being idle for hours at a time. It’s not long before they begin to withdraw socially and isolate themselves by simply staying at home.”
The assumption being that isolating oneself and staying at home is a bad idea.
I hear this everywhere, and I’m sure it’s often true. What do I know, perhaps it’s always true. But looking back at my father’s retreat from the world, I cannot dismiss his will, his choice, his clear desire. He may not have known what was best for him, but he knew what he wanted. He wanted to be left alone.
We’re not supposed to leave people with dementia alone, to sit and stare into space. We’re negligent if we do. Imagine an attendant or therapist in the dementia unit of a nursing home who took residents at their word and just let them be. That therapist would soon be out of a job. No, those with dementia must be urged to join the world. They must be involved, they must rise to the occasion—and in fact, the payoff is often a happier, more upbeat patient.
But it’s never black and white for me. I never stop thinking that my father should have been granted some leeway, that he deserved to be listened to, that sometimes it was better for me to simply let him sit or lie there in peace, doing nothing, not connecting to anyone. After a lifetime of rising to the occasion, didn’t he have the right to a break, and to the peace and quiet he wanted? Even if it made him unhappy?