In a recent Mind Matters podcast episode, neurosurgeon Michael Egnor (Mike), a frequent contributor to the site, interviewed friend and colleague Stephen Post, an expert in memory-loss-related disorders. Here’s a snippet of their conversation, which you can enjoy in full by following this link.
So to begin, your new book, Dignity for Deeply Forgetful People, why did you use that title and what do you mean by deeply forgetful people?
Well, that’s a fabulous question to begin with because the title doesn’t quite say it all, but it’s close. I’ve been working with deeply forgetful people and their caregivers since I went out to Case Medical School in 1988, and I have never felt comfortable with the term dementia, at least in a public sense, because it’s a term of decline, dementia from a former mental state, and it very easily leads to negative metaphors like husk, shell, gone, absent, even dead, vegetable and the like.
That’s very unfortunate because it, first of all, leads us to think about them being so categorically different from us. So it’s them versus us type thing, but also, it blinds us to noticing, and noticing is a very important word, noticing the hints and the expressions, which are sometimes spontaneous and sometimes elicited by music or nature or old factory-type phenomena and apple pie. People come back into themselves to varying degrees, and our job is to notice and to embrace that and to stimulate it and so that we can realize that Grandma is still there. And it may be a bit mysterious for us, but deeply forgetful is much more a concept of continuity. We all have our forgetful moments, I’m sure I do out in the parking lot when I’m looking for my car desperately and wondering if I even drove to work today.
But sure, deeply forgetful, it’s almost mystical and its intonations suggesting that deep forgetfulness frees us from some of the chronological pressures running around from point A to point B to point C, and always being so worried about hyper-cognitive values, linear rationality. I talk a lot about symbolic rationality, which is always there with these individuals and can be stimulated through many, many different devices. So I’m wanting to get away from the word dementia.
What do you mean by symbolic rationality? That sounds fascinating.
Well, that’s an important question. I spent 20 years in Cleveland. I knew a fellow who had severe Alzheimer’s disease. He always clutched his cowboy hat even to his last day of life. And it was as though he knew that somehow his identity was connected with that symbolic object. And as it turns out, I learned from his daughter, he had worked in the steel mills on the west side of the Cuyahoga River all his life, and he always dressed country and western. So somehow he knew that that symbol was important to who he was. You can take de Kooning, the great abstract expressionist artist, he was diagnosed at Cornell Weill New York Hospital, and for 14 years he had dementia, most likely of the Alzheimer’s type. For 13 and a half of those years, he would paint, he would be in a loft in Greenwich Village. He was accompanied by an assistant. He always wanted to wear the same pair of painter’s dungarees, and they had several of them splattered with paint so they could wash them and so forth. But he knew that that was who he was.
And sporadically he would rise up, take his paintbrush and dip it in the acrylic paint. Then he would go up to the easel and he would paint. And his early painting when he was fully “intact” was so anxious, and he was really one of the most incredibly forceful painters of the age of anxiety, but as he became more deeply forgetful, he became more quiescent. He painted things that looked a lot more like Georgia O’Keeffe. The colors brightened up and I think he came into himself, believe it or not, artistically later on. Of course, some of the critics said, “Well, he was a husk, a shell of his former self.” But the one I liked said, “Wait a minute. He had Alzheimer’s for 14 years and for 13 and a half of those years, he knew he was an artist and he painted.” And there was a posthumous exhibit of his work at the Metropolitan.
So I think we always have to recognize the continuing presence of symbolic identification. I tell the story in the book of a fellow I met at a nursing home in Chardon, Ohio, and it was a special care unit. Joe Foley, the famous neurologist who was my mentor, we went into Jim’s room and we read his little biosketch on his wall and we knew he had a couple of sons. And the nurse guided me out with Joe to meet Jim, and I took Jim to a table. We sat down and I said, “Jim, how are your sons?” And he couldn’t respond. But then I said, “How’s Davy and how’s Luke?” And by using language to cue him and prompt him, he actually lit up a bit. He wasn’t conversant, but he lit up.
And then he had a white twig in his hand, talk about symbols, a white twig in his hand. It was painted white and the ends were blunted and wasn’t harmful in any way. And he put it in my hands and he smiled this effusive smile, and if love was electric, that place would’ve been on fire, Mike. And then he said to me three words. He said, “God is love.” And it turns out I asked the nurse that he grew up on a farm in northeastern Ohio. His father was a Christian and they went to church and his father loved him very much, and Jim associated tender loving care with that period in his life to which he had gone back. And that white stick was a symbol for the kindling, the nurse said. And his father had always him go out and get the kindling in the morning as he was growing up. And so that was his way of reconnecting with his loving dad.