To Whom I May Concern: Coping with Alzheimer’s, one tale at a time

A storytelling series gives the stage to people living with dementia, who tell their stories, in all their complexity, in their own words.

| 11 Jun 2024 | 01:59

On a Friday afternoon this April, Michael Pollack, a 73-year-old man with close-cropped white hair and rounded glasses, sat in a director’s chair in front of a packed room in a Midtown office building.

“My memory’s not so good,” he said steadily into a headset microphone. “I’ve really become self-conscious about it. Actually, I’m a bit embarrassed. If I could just get across to them — my family, my friends, the people I live with, the people who try to help me. If I could just let them know what it’s like to be me these days.”

Pollack, who has Alzehimer’s, was one of four people that afternoon who spoke about living with dementia. Through reading aloud letters addressed to people in their lives, they laid bare the ways in which dementia had set into and fundamentally reordered their everyday lives — and even their senses of self.

They were taking part in an international storytelling program called “To Whom I May Concern,” locally organized by the Alzheimer’s care nonprofit, CaringKind. The storytellers, all diagnosed with some form of dementia or mild cognitive impairment, take part in weekly group sharing sessions, in which they work with facilitators to turn their stories into a script. They then perform the script to an audience of family, friends and healthcare professionals.

The performances are a look into the interior lives of those living with dementia, and in particular, Alzheimer’s, a progressive disease whose defining effect is, as Pollack puts it, “a diminishing” of selfhood. In its middle to late stages, most lose their speech completely; the experience of living with the condition becomes unspeakable, and to outsiders, unknowable.

“To Whom I May Concern” is a way for patients, who may otherwise be inclined to keep their diagnoses close to their chest, to narrate, on their own terms, the experience of living with dementia and cognitive impairment. There’s the mourning of everyday things: small blips in memory, directions that had previously been ingrained. The everyday losses amount to monumental ones: careers and family roles, selves they were before.

Adrienne Viscio, a former special education teacher, read a letter addressed to her students during the April performance: “It dawned on me that if I were to take the same evaluations of learning disabilities that I was giving you, my own performance would have been dismal. The symptoms were subtle until they weren’t. I stood confidently in front of you teaching from my notes, while I held on to them for dear life,” she said between long breaths. “Not a day goes by that I don’t think of you and mourn the loss of what was so much more than a career.”

Detailing these losses so vulnerably, in front of an audience of caregivers and loved ones, seems not just to be about the grieving of former selves, but also the acceptance of a new reality shaped by dementia.

Speaker Ronnie Sholom read a letter addressed to his wife, describing a former self who was always moving a few steps ahead of her. Illness has slowed him down. “Maybe slow is what I needed. When I began to lose my balance, you stood strong. When I looked for more things to do, you filled my day,” he said. “I am seeing and appreciating everything around me one step at a time. I live in the present.”

A month after the event, Our Town interviewed Pollack over a Zoom call. He spoke from a couch in his Tribeca home, wearing an orange baseball cap with the CaringKind logo. “Alzheimer’s is a forest and we are all trees and each of us is affected and afflicted in our own way,” he said. “But you spend time with the other trees and you get to know people. There’s no judgment, whatever goes on.”

As a wry, confident speaker who initially tested well on cognitive evaluation exams, it took Pollack years of doctors’ visits and several hospitals in New York before he was officially diagnosed. “I present well. Even now I’m present. I’m engaging. I’m funny,” he explained.

Pollack is a proponent of talking about the disease advocating for oneself: He’s participated in four “To Whom I May Concern” performances, and wears his CaringKind hat while walking outside, eager to talk with strangers about Alzheimer’s.

“While I’m losing my mind, I’m trying to help change minds,” he said. He is frank about the disease’s impact on his life: “I am afflicted and everyone else in my life is affected. ... I am not exactly who I used to be.” But, he continued, “I can have hard conversations because I’m not giving up and I’m not surrendering. I’m fighting.”

For Pollack, telling his story is also a vital tool for piercing through the stigma that hangs around dementia and other cognitive disorders — a dark cloud heavy with fear, fatalism, and eventually, dehumanization.

The mission takes on a particular urgency in healthcare settings: a 2021 AARP study found notable discrepancies between the perceptions of average adults and healthcare providers regarding dementia and cognitive impairment. Healthcare providers tended to overestimate how negatively their patients feel about dementia, and some were less willing to tell their patients about a diagnosis.

Medical students and healthcare professionals have attended previous “To Whom I May Concern” events. Before the performance, the audience completed a word association exercise. “The first three words before the program, people think, you know, ‘hopeless,’ ‘sad,’ ‘depressed,’” said CaringKind president Eleonora Tornatore-Mikesh. “And then after the program, people’s words changed to ‘hopeful,’ ‘community,’ ‘love.’”

Pollack recalled performing for a group of geriatric palliative care providers — “I’d say the hardest job there is because you lose every one of your patients eventually,” he said. “You gird yourself because on an emotional level, that’s a really hard thing to come to work to do.” By Pollack’s telling, however, everyone in the room cried, including the performers. “Getting to be able to break through that wall and open their hearts a little for us was amazing,” he said.

Last year, Leqembi, the first and only commercially available drug treatment for early-stage Alzheimer’s, was put on the U.S. market. Researchers told Reuters that its adoption has been slow, in part due to healthcare providers’ skepticism and “therapeutic nihilism.” Pollack is one of several thousand Americans who receives infusions of the drug, which may slow the disease’s progression. “There are treatments now. I’d say 10 years ago, I couldn’t make that statement. ... I believe in my lifetime, there’ll be a cure for this,” he asserted.

In the meantime, he wants people who suspect they may have dementia to know there are resources. There is a community. “Do not question,” he emphasized. “If you have concerns, go seek help. Go to CaringKind. They’re there to help. The worst thing about this illness is that it drives people away from people. Aging is its own challenge. And this is icing on that cake. It’s a bitter icing. But don’t isolate.”