Living & Walking with Alzheimer’s

What a terminal illness can teach us
Ricardas Brogys/Unsplash

Not long ago we moved back to a shoreline village where we had lived happily for many years. We have reunited with many old friends and neighbors, who, somewhat to our astonishment, are still in residence. Admittedly, we are all getting (much) older, but most of us are managing reasonably well. However, one of our closest friends from that earlier time is struggling with Alzheimer’s. He is now in his mid-seventies. A graduate of an Ivy League university and law school, he had a distinguished career as a lawyer and eventually a judge. Back in the day, we played a lot of basketball together. He was always very active in the community, in politics, and in his church. His children and ours were close in age, and he served for many years as the scoutmaster and mentor for our son.

Our friend is out walking around the village nearly every day and sometimes I join him. He is tall and thin, and walks at a pace that I can’t quite manage because of a bum knee. On our walks he keeps a sharp eye out for litter, which he picks up and deposits in the town-issued garbage or recycling containers along the way. “It’s one thing I can still do,” he told me with a wry smile. Our conversations are usually pretty one-sided. He understands what I say to him, and he gets my jokes, but he usually can’t retrieve the words he wants to use in response. “You know I have Alzheimer’s,” he has asked me on several different occasions. I once asked how he was diagnosed. He said he had experienced some disturbing symptoms and went for tests. The tests were conclusive. “That was a bad day,” he told me.

He is on a battery of medicines and a strict diet, and his wife is a stalwart support and aid. His daughter lives nearby and he is still very much connected to his church. He seems solidly anchored in his community, but he doesn’t pretend the disease is anything other than bewildering and frustrating. I am humbled by his bravery and by his family’s courage and determination to care for him.

In our desire not to become a burden, we deprive our loved ones of something essential.

I am prompted to write about my friend after reading reviews and articles about a new book by the novelist and psychotherapist Amy Bloom. The book is titled In Love: A Memoir of Love and Loss. It is about her husband’s determination to end his life at age sixty-six after he received an Alzheimer’s diagnosis. I have not read the book. The reviews and articles I’ve seen have been very positive, even reverential. None questions her husband’s “right to die” or Bloom’s acquiescence in that wish. Any such reservations are clearly understood to be out of bounds. In fact, much is made of the difficulties and injustices facing Americans seeking assisted suicide. Bloom and her husband had to go to Switzerland to end his life. “Right to die in America is about as meaningful as the right to eat or the right to decent housing,” Bloom writes in her book. Although his death was not imminent, her husband was adamant that he did not want to suffer the indignities associated with Alzheimer’s. “I’d rather die on my feet than live on my knees,” he told his wife. Bloom seems to have felt it was her duty as a loving spouse to help her husband over the legal and logistical hurdles involved, and even to write about it, something he implored her to do. “Part of what makes this book moving is Bloom’s toughness,” Dwight Garner writes in his review for the New York Times. “She’s a mama bear, in the right ways. She doesn’t go overboard in explaining her moral reasoning. She doesn’t have to. Her title is her explanation.”

Naturally, most of us are loath to question such intimate and private decisions. Like questions of sexual morality, consent is increasingly the only moral boundary we recognize when it comes to what we do with our own bodies. It seems clear that Bloom’s husband was most concerned with personal autonomy, self-control, and presumably with not burdening his family. But a life “on one’s knees” is not necessarily a humiliation; it can offer a different and humanizing perspective. I’m reminded of another old friend who took care of his incapacitated wife for many years. “I won’t pretend it is easy,” he said, “but it does reacquaint you with the elemental things in life, and that can be a relief and a blessing.”

The bioethicist and moral theologian Gilbert Meilaender wrote a piece several years ago with the mischievous title “I Want to Burden My Loved Ones.” Meilaender offered a note of caution about what the sick and dying may think they want when it comes to being cared for. In our desire not to become a burden, we deprive our loved ones of something essential. “Is it not in large measure what it means to belong to a family: to burden each other—and to find, almost miraculously, that others are willing, even happy, to carry such burdens?” he wrote.

We naturally react with ambivalence to the dying, who in many instances, such as patients with Alzheimer’s, become “strangers” to us. That ambivalence needs to be acknowledged in the medical decision-making process, and requires that family, doctors, and caregivers all be involved in a conversation about end-of-life treatment. In caring for the dying, our culture often insists that we ask what those who are comatose or afflicted with dementia would want us to do. Meilaender argues that that is the wrong question. “What can we do to benefit the life he still has?” is the better, even more humane, question. It is the question our friend’s family seem to have asked themselves. It is the question reviewers of Bloom’s book might have asked as well.

Published in the May 2022 issue: 

Paul Baumann is Commonweal’s senior writer.

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