Dementia Is Not Binary

Sharing some caregivers' voices from behind the NYT paywall

Today I just want to amplify the voices of six total strangers by liberating them from behind the New York Times paywall for all to read.

These letters appeared last weekend in response to the paper’s latest personal essay about dementia caregiving: “A Less Bleak Story About Dementia Is Emerging,” by Lynn Casteel Harper (originally published June 18).

To the Editor:

I was raised in the shadow of dementia, with many in the family developing the disease. For years Mom warned us to “walk away” when her time came. When I became her very unwilling caregiver, I saw only loss, not the person, heard only confusion, not the thought. My life as her care partner was a journey of discovery, from dread to acceptance to joy. It is the most rewarding thing I have ever done.

We are on the cusp of a changing narrative about Alzheimer’s disease and related dementias, from despair to hope — a recognition that those who live with dementia are valuable people with gifts to give and lives to live. They and their families and care partners need and deserve our support to thrive and live with happiness.

Marilyn Raichle
Seattle
The writer is the executive director of Maude’s Awards for Innovation in Alzheimer’s Care and the author of “Don’t Walk Away: A Care Partner’s Journey.”

To the Editor:

This guest essay makes sense if you factor in that the author is a Baptist minister and a chaplain. However, apart from a select few, most people do not have the time or the energy to seek out the “glorious” opportunities that one writer she quotes associates with dementia.

Yes, in an ideal world, it would be nice to find some “magic and beauty” in a relative who is mostly angry, miserable and out of touch with reality, who is unable to make any decisions or to take care of himself or herself. But for those of us already in our own senior years, taking care of an elderly parent with dementia is simply one more responsibility.

Rather than hint at fault in people who are trying desperately to deal with the consequences of a loved one’s decline, the author should acknowledge that this is not a beautiful moment for the majority of us. For her to focus on the exceptions is unfair.

Peggy Ross Bybelezer
Montreal

To the Editor:

I read, with great interest, Lynn Casteel Harper’s excellent guest essay about dementia not being just a “decline unto death.”

In the late 1990s, when I headed up a regional Alzheimer’s organization, my father was diagnosed with early-stage Alzheimer’s. He immediately went into overdrive trying to destroy the stigma that comes with the diagnosis.

He asked to come along on my speeches to local groups. I introduced him as a volunteer and did not disclose that he had Alzheimer’s. He would talk about himself, his family, his impressive background in government service and how he was spending his retirement. Only at the very end would he disclose that he was in the early stages of Alzheimer’s, and there was literally a gasp from the audience.

He relished audience members coming up after the speech to give him a hug and tell him how brave he was. He definitely changed a lot of attitudes, and his obituary identified him as an “Alzheimer’s activist.”

Debbi Honorof
New York

To the Editor:

I read this essay with great sadness. While surely I understand that some people experience a gradual loss of memory as in stereotypical Alzheimer’s cases, my mother died of Lewy body dementia. Her memory (as far as we could tell when she was lucid) was basically fine, but she lost any control of her critical faculties, and died, unrecognizable, in a nursing home.

As far as I can tell, she was well cared for until her death. Still, in those last years, she was utterly gone: Nothing about her personality was the same, her intelligence and comprehensibility left her, and she was a different person.

I have no idea how to make sense of what happened to her, or make it OK, or make it into poetry. I am an electrical engineer, and as far as I could see it was a sad reminder that we are all physical beings who fail in different ways, some more heartbreaking than others. But there is no even minute good that came from it. I learned nothing about her, did not feel closer to her, and all that was left in the end was an incomprehensible tragedy.

I do hope that others like the author can make some sense of their loved one’s dementia, but as for me, it was just a meaningless disaster.

Daniel S. Weile
Newark, Del.

To the Editor:

As the husband of a woman with Alzheimer’s disease, I read Lynn Casteel Harper’s guest essay with growing discomfort. While I honor her experience witnessing dementia in others, her proximity is observational, not lived. There is a world of difference between the periodic engagement with a grandparent or parishioner with dementia and sharing a home, a life and a history with someone whose selfhood is dissolving before your eyes.

Ms. Casteel Harper criticizes grief narratives, but I invite her to consider what truly fuels that grief: not sentimentality, but the wrenching experience of witnessing the gradual erasure of a loved one’s identity, agency and continuity. Grief is not just for what was lost, but for the vanishing presence of someone who, while physically here, can no longer recognize her family or articulate her own story.

That grief isn’t about me. It’s about us — the shared world my wife, daughter and I built that is now unrecognizable to her.

To deny this as self-indulgence is to misread not just the emotional landscape of dementia, but its existential core: the unraveling of personhood. If you haven’t lived that loss from inside the relationship, I respectfully suggest humility in judging those who have.

David Corey
Lake Oswego, Ore.

To the Editor:

Lynn Casteel Harper touches on one often overlooked result of dementia caregiving — the profound and positive effect on the caregiver.

In caring for my husband at home and now in a nursing home, I am grateful for what his dementia is teaching me about myself. Yes, I wish my brilliant, artistically talented husband still had his cognitive abilities intact, but he doesn’t. Yet I am thankful that I have had to change to meet his needs. Reaching deep into myself, I have found compassion, resilience and love. I would have never found these deep reserves of human kindness without this experience.

On a recent visit with him, he was antsy before lunch was served. I made up a story that we were seated on a ship, heading for the dock. I got him to sway side to side with me as our phantom ship approached the mooring. He calmed down and I was so full of joy to be able to connect with him. I treasure these kinds of moments just as much as the ones I have from the past.

Shirley S. Savage
Bath, Maine

Wow. I mean, just wow. Daniel S. Weile, you do understand poetry. David Corey, I join you in wishing for more humility—for buckets of humility to rain down on all of us.

Peggy Ross Bybelezer, I feel you and your righteous anger about the generally-unacknowledged privilege shared by most essayists who have the high-level connections to get their work published in the NYT. You are completely entitled to feel the anger that finds its outlet in your complaint that the original essay was “unfair.”

Peggy is working from the idea that “fairness” from a news outlet means always presenting “both sides” of a story—never mind that the original piece was published in Opinion.

But the carefully curated selection of letters here is a testament to exactly that kind of pro/con, yes/no editorial practice.

Look at the tonal pattern that emerges from the ordering of the six testimonials about the caregiving experience. We start with uplift (‘rewarding”), then contrast that with a downdraft (‘desperately”). Another up (“brave”) and a big down (‘meaningless disaster”). Then a shift in the repeating pattern: down/up, so the selection can end on a positive note (“joy”).

(Anyone who’s ever scanned a poem knows that you need a metrical inversion now and then.)

I’ve only been following the literature on dementia closely for a year, but I’m soooo tired of the compulsion to moralize. It’s a tendency deeply ingrained in a Western culture whose religious and philosophical core was built on binary oppositions.

Actually, that penultimate letter from David Corey—the place where the metrical pattern shifts—is the most resistant to being classified along a bright-side/dark-side opposition. It does chasten Harper’s relatively safe proximity to the beast that is dementia, but it has no patience for individual one-upmanship: “That grief isn’t about me. It’s about us.”

Relation, not isolation.

Dementia caregiving isn’t all or mostly good or all or mostly bad. It is not one single disease but rather an unfolding, constantly changing state of being that affects not only the sufferer but every person with whom the sufferer interacts in a more than brief and superficial way. Contrast that idea to the terrifying simplicity of the story my parents’ generation told when their parents got “old-timer’s”: your memories dim and die out one by one, you disconnect from everyone, and then you die.

With the help of neuroscience, psychology, and a lot of testimonials, we are beginning to understand that dementia is no less complex than any other stage of a life that any of us might have.

As we talk about dementia, then, let’s have more relationality and less binarism, please.