Even with Alzheimer’s Disease…

Posted | Jonathan Gillman No Comments

Even with Alzheimer’s disease, my father was hamstrung by the need to be right, to do whatever it was the right way. That’s how you win approval, that’s how you gain status—these were ideas fully engrained in him by his mother, who pushed her children to get the things she wanted desperately and didn’t feel she had gotten. There was that constant need to please—whether his mother or others—by doing things the right way—that drove him, and sometimes paralyzed him.

Once, when I was playing on his piano, and he could hear me—I was playing a piece he had played when he was 19—there was a program of it on the wall between us—he knew it in his bones; I was playing it wrong. This was not how Beethoven intended. When my father played it the right way, it took four and a half minutes. When I played it in my long, slow way, finding, like Miles Davis, the music between the notes, it took 22 minutes—playing the same notes.

When I began playing the piece, it only took a few notes before my father knew I was doing it wrong. Before Alzheimer’s, he would have booed, or yowled, “Stop! You’re trying to kill me!” But he wasn’t speaking anymore. To let me know how wrong it was, he started choking—anything to get me to stop. And it wasn’t a child’s fake choking, it was the real thing—it sounded like he was going to die. In the stubbornness of our family, he would rather die than have me play it the wrong way. But I wasn’t going to stop just because he didn’t like it—I’d spent too much of my childhood doing things because that’s how he wanted them, without considering myself. Besides, the nurse was there, she had raised the bed, to stop his choking; we were not supposed to do anything else.

I kept playing. He kept choking. I heard the rattle in his throat. This was the end. I wasn’t concentrating much on the music, but still, I kept playing.

After a while, his choking let up. It changed, gradually, to a cough—and then it stopped. He was still.

I kept playing. I relaxed a little. And then I heard a strange noise; at first I didn’t know what it was. He was humming—the way he used to, before Alzheimer’s, when he was playing along with me.

It gets stronger, surer;
there’s no mistaking it—
and we go on like this,
the two of us,
making music
until the piece is done.

It took him to the point of death to let go of doing it the one right way, and to accept that there might be other ways that were good, too.

A person looking at him—he was bed ridden, slept 20 hours a day, never opened his eyes, had Alzheimer’s disease, didn’t talk, couldn’t stand, eat, go to the bathroom on his own, or do anything for himself—might think, “With Alzheimer’s, there’s not much left to him, so unlike what he used to be.” Someone might hardly consider him “human.”

But even with this dementia, he could still “make music”—a sign of being very human—and, for the first time, make it with me. And we could connect, though the music, in a way we never had before.

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