The Great Unlearning

Alzheimer's Disease
What remains after memory is gone?

Alan Dienstag is a New York-based psychologist. He was an early practitioner to integrate support groups into his work with Alzheimer's patients. He also created a writing group for early Alzheimer's patients, together with the novelist Don DeLillo, that met for three years.

Here are a few stories from his article/interview with Speaking of Faith about Alzheimer's Disease, in particular about his support and writing groups:
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I was working with a woman who had been diagnosed with Alzheimer's. She was in the group for a long time, and then it became impossible for her to participate. The conversation was moving too fast. She didn't have the language. She couldn't string together more than a sentence or two, and it just wasn't working. And so she had to leave the group. Her husband, who was extraordinarily devoted to her, really wanted her to maintain her connection with me. It was very helpful that I had known her before. And she would bring photo albums in. She would do a little tchotchke tour of my office and when it wasn't really possible to talk about things, she would walk around and we would look at objects. She was very taken by the birds outside the window. That was the kind of time we spent together. And then even that became difficult. She started to retreat into almost a mask-like blankness. It was harder and harder to access her.

And around that time I was going on vacation, and she loved the beach and I loved the beach and this was something that we used to connect about. And as I was leaving I said, "Ann, I'm going to the beach. I'm going to be away for a while." And she smiled and her face lit up. I said, "What do you love about the beach?" She kind of drifted away, as she did, and she got very quiet. And again I waited and I thought, well, she can't really answer that question. And she turned to me and she said, "There's some kind of music that lives there."

That was just a wonderful answer. And not a summer has gone by that I haven't thought of that at some moment at some beach. So to me that's like a prayer. Where does it come from? You know, in this A.J. Heschel sense of prayer, this sense of wonder, this sense of place between knowing and not knowing and the mystery of things. So that's in there too. And you never know when it's going to come out.
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There is body memory that I think we're learning more about in the 21st century even than we knew a couple of years ago. How eye contact and touch and just presence and indulging simple pleasures. There was one woman who I could wheel her outside to sit in the flowers, and she would be so sad and withdrawn when I arrived, sitting in that common room. And she would come to life. I could just imagine what stories were behind that. And I think that was also about body memory. I'm imagining this woman who wrote about picking the fig from a tree in Athens, if you could somehow take her to that place in Athens, even long after she could write those sentences, she would feel that story. I think she did. I think she did feel that story when she wrote that. And I think she felt that story when she shared it with us. She was delighted to share that with us. It's still with us. She's gone; she's been gone for a while and here we are, talking about her lover and that fig tree.
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There were about 20 people in the room and we were going around the circle and people with early Alzheimer's were talking about their lives and what they do to give their lives meaning, find stimulating things to do and so on. This man started talking about his experience as somebody with early Alzheimer's, and he was painting a very benign picture of it all. He said, "Well, you know, it's difficult not to be able to remember, but I get up and I can do this and I can do that." Basically he was just saying he's fine, he's OK. And over his shoulder, sitting behind him, was his wife. And she was crying. She was crying. And I knew then how much he'd lost, how much she had lost.

But there he was. He wasn't uncomfortable. He really wasn't. And so I think we project our feelings onto them, and we assume that they are suffering some terrible thing, but in fact that's not necessarily their experience of it.
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I was working with a woman whose husband was in a nursing home. And there's that period of time when people with Alzheimer's begin to not recognize their family members, and it's wrenching and it's painful and it's awful. It's just awful. And he was in that stage, and so it would happen every so often. The first time it happened, she came to me in kind of a panic and she was distraught and said that she didn't want to live anymore if he wasn't going to recognize her. What started to happen was that she would go and see him, and the first thing she would say is, "Do you remember who I am?" And I was trying to convince her and trying to help her to kind of back off of that.

I was suggesting to her that there are other ways that she could see that he recognizes her. And there are, in fact. Even when someone can't answer that question, you can see on their face, you can see in their body language. There are lots of ways that you can tell. But he got to a certain point where he just couldn't answer the question. And one day, she went in and she asked him, and he looked at her and he said, "I don't know who you are, but I love you." And I thought, oh, he thought of the right answer.
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When you've seen the unraveling of this consciousness that we have — and that is definitely a word that I would use — when you've seen the unraveling from beginning to end, you can't help but recognize what a miracle it is, this mind that we have. This conversation that you and I are having, the fact that I'll leave here and just put myself out there into the world and think about a hundred other things. So I have come away, certainly, with a renewed appreciation of that. And I guess that does sound a little bit like the near-death experience and now I really appreciate life, but on the other side of the coin, I realize how ungrateful we are. We don't notice it, really.

I think we tend not to notice it unless it doesn't work. And then we get all bent out of shape, "Oh, I can't remember this. I can't remember that." But for moment to moment, it's a miracle. It's really a miracle that all of this works and that it works in the way that it does and that it has the richness that it does, that it takes in so much and that our internal lives and the lives that we can build as a result of what's inside are so rich. So I absolutely have been touched in that way.
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long ago, it must be
I have a photograph
preserve your memories
they're all that's left you

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