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The On Being Project

Gathering Memories and Giving Them Away

When I came to study theology in my early 30s, I wanted from the first to be doing “field work,” not just scholarship. I arrived in the middle of the academic year, and most of the opportunities had been taken. But a place was open as a chaplain on the Alzheimer’s and Dementia ward (called Wooster II) of a large home and hospital for the elderly. I took it on as a personal stretch and a kind of adventure.

I took it, I suppose, in part because I wanted to test the reality of my ideas about faith and ministry in a crucible of suffering. My time on Wooster II turned the tables on me by stripping down my sense of the human condition to the barest essentials, and showing me that I had scarcely noticed these essentials in my previous thought and experiences.

Alzheimer’s is best known for its defining symptom of short-term memory loss. But with devastating ultimate sweep, it reveals all that memory holds and weaves together — identity, personality, autonomy, relationship. I’ve been waiting for years to have the conversation I have in this hour with Alan Dienstag — about the window to this knowledge that is Alzheimer’s and its relevance for us as “healthy” human beings, as well as the increasing numbers of us who will face Alzheimer’s in ourselves or our families as we simply live to later ages.

Here is the great gift I could give to the men and women I met on Wooster II: unlike those who had known them long and intimately, I had no former self with which to compare them — no sense of unfolding grief, of death in slow motion. I could come to know and love them as they were, right there. And here is the greater gift they gave me: they showed me that the structure of my life — the identity and credentials by which I present myself, and a verbal intelligence with an ability to impress — were not the core of my human presence. They would never remember my name or consider my education or accomplishments. But they would know if I was a kind human being — a good listener, patient, and attentive at every level of human presence — not just by way of words, but through eye contact, compassionate silence, touch.

This interview with Alan Dienstag is not about my experiences, though they inform my questioning throughout. He has his own larger, challenging experience of caring relationship with people with Alzheimer’s — and he has insight into new approaches to treating the whole person in the earlier stages of this disease. He came to a special interest in this through a writing group he led for three years with the novelist Don DeLillo, whose mother-in-law had Alzheimer’s. As Dienstag puts it, this was one of those moments where someone outside his profession — an artist — shed unexpected light on his understanding of the treatment of Alzheimer’s disease, taking him outside the box of his training to a deeper understanding. Up to then, he says, he had been focused on Alzheimer’s in terms of loss of memory. Through this group, he came to see that in the early stages of this illness, he could help people experience themselves as “remembering people.” He could help them use time wisely, gathering memories and giving them away, drawing them forth and leaving them indelibly in the world rather than losing them.

I am aware of the danger of seeming to romanticize a disease whose trajectory is merciless. This program focuses on the Alzheimer’s sufferers themselves and not on the experiences of caregivers, which can be overwhelming and in some ways more exacting to bear than having the disease oneself. We heard this loud and clear when we asked our listeners to tell us about their experiences of this disease about six months ago, which is how we found Alan Dienstag. And yet many — though certainly not all — did suggest that, in the end, Alzheimer’s has distilled their sense of themselves and their loved ones to an essence of spirit.

I experienced on Wooster II how even as the power of memory and cognition behind the structure of our lives unravels, the spark of life remains stubbornly, mysteriously strong. Emotions are felt deeply, intuition persists, and body memory remains after verbal memory is gone. The human desire to know and be known, to love and be loved, remains vital. And so, perhaps, does the inability to love and be loved. As Alan Dienstag puts it from his longer clinical experience, the unfinished histories of our relationships continue, even when many of the traits and tools with which they were built across a lifetime have altered beyond recognition. Sometimes, but certainly not always, Alzheimer’s unwraps unexpected possibilities for healing too.

Alzheimer’s is a malady American adults have told pollsters they fear more than heart disease, stroke, or hurricanes. But like heart disease or stroke — if not hurricanes — it is a widespread reality of modern life, a reality that will become more and more commonplace as more of us live longer. And so we must look it square in the face, and in all its complexity. As in the midst of all suffering, we can perceive and attend to flashes of wisdom, moments of beauty as fragile but as real and mysterious as memory itself. We can uncover a deeper understanding of what makes all of us human.

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