man and woman at oceanToday is the last day of the 3rd annual World Alzheimer’s Month™. In honor of this month I highly recommend an unflinching new memoir about dementia caregiving:  “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s” by Meryl Comer (HarperOne, September 2014). Few Alzheimer’s memoirs are this honest about the challenges of long-term dementia care, or as moving as a call to action for better dementia care and more funding for Alzheimer’s research.

Alzheimer’s disease, the most common type of dementia, is a growing epidemic. As more of us live longer, and boomers age, almost all of us will know someone with Alzheimer’s disease, develop it ourselves, or care for a person with the disease. One in eight people age 65 and older will develop Alzheimer’s disease, and nearly 50 percent of those age 85 and older. Alzheimer’s disease is the only cause of death in the top 10 with no cure, proven means of prevention, or way to slow its progression. And yet government funding for Alzheimer’s research is abysmal: only about $500 million a year compared to several billion each for cancer, HIV/AIDS and cardiovascular disease.

"Slow Dancing with a Stranger: Lost and Found in an Age of Alzheimer's," by Meryl Comer
“Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s,” by Meryl Comer

In the new book “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s,” Emmy-award-winning broadcast journalist Meryl Comer shows us the devastating cost—personal and financial—of caring for loved ones with this progressive disease, a disease which can require long-term care for 10 to 20 years or more.  Comer is president and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative, a nonprofit which supports awareness, diagnosis and research of the early stages of Alzheimer’s disease, and she is also a co-founder of Women Against Alzheimer’s. Comer’s husband, Dr. Harvey Gralnick, was chief of hematology and oncology at the National Institutes of Health until he received a diagnosis of early-onset Alzheimer’s disease at age 58. Comer’s mother, who also has Alzheimer’s disease, lives with Comer and her husband.

Meryl Comer, Emmy-award-winning broadcast journalist and author of "Slow Dancing with a Stranger: Lost and Found in an Age of Alzheimer's"
Meryl Comer, Emmy-award-winning broadcast journalist and author of “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s”

As often happens, the first signs of her husband’s early-onset Alzheimer’s were not memory lapses but uncharacteristic behavior and angry outbursts. Comer could not figure out what was going on, and her husband was in denial. They suffered several years of misdiagnoses and rebuffs by doctors who refused to accept that this trim, athletic and highly-intelligent man could be sliding into Alzheimer’s at such a young age.

Early-onset Alzheimer’s disease, which manifests before age 65, often progresses more quickly than Alzheimer’s disease later in life, but in Comer’s case her husband has lived with Alzheimer’s for 20 years. As of this writing he is bedridden in the last stage of the disease, cared for at home by Comer and a team of nursing aides. As his needs have changed over the years, and Comer needed more support, she tried various dementia care facilities, even a psychiatric ward to try to adjust his medication. She supplemented his care in those facilities with private aides, but none of the facilities worked out. Unlike many people with dementia, Comer’s husband was consistently aggressive as his dementia progressed—a strong man unbent by frailty who remained a physical threat to those around him. Even his most devoted caregivers could not always anticipate when he might throw a punch. For her own safety Comer had to try a number of care situations. Always, her husband ended up coming back home.

Also unlike many people with dementia, Comer’s husband became nearly unresponsive early on, making it much more challenging for Comer and her caregiving team to connect with him as a person and not a diagnosis. While many people living with dementia—such as my mother—retain the ability to smile and share affection through the latter stages of dementia, Comer’s husband seemed “gone” within just a few years of his diagnosis, increasing his wife’s distress. “The man I live with is not the man I fell in love with and married,” she says. While for me and my mother dementia caregiving was a “long hello,” for Comer it seems more like it is often described: a “long good-bye”:

As the years went by, it got harder to recall who he had once been. I changed his diapers. I cleaned up his accidents. I dealt with his childlike behavior and unexplained outbursts. Somewhere along the way—even now I am not exactly sure when—my husband disappeared. I have slept by his side all these years to reassure him that he is safe at home. I kiss him at night and snuggle in close, like we used to do. If his eyes flicker open briefly—something that is quite rare now—I try to get directly in his line of sight. I know that it is unlikely he can still connect the image with the voice. I have no way of knowing what he takes in, but I do it anyway, just in case.

I admire Comer’s forthrightness in describing the realities of Alzheimer’s care and the decisions she’s made. Family caregivers who write non-varnished accounts of their lives and decisions invite criticism, but I have no interest in critiquing her choices. Although Comer has served as a caregiver for an unusual amount of time—two decades for her husband, and one for her mother—her experiences are both unique to her and common to all dementia caregivers. Yes, she has enjoyed certain financial advantages as a member of the upper middle-class, but with her loved ones’ care extending for so long, Comer used all of her savings and has had to return to work to rebuild them. (She works from home so she can continue to help care for her husband.) Financial resources aside, Comer has faced a rare breed of hell. The question is, what can we learn from that hell?

While “Slow Dancing with a Stranger” is well written and edited, I found myself wishing midway through that Comer would have offered more insight into how she found the strength to continue fighting for her husband, her mother and her own well-being. What has kept her going? Grit? Love? Faith? Only near the end of the book does Comer mention the ways she has found support—how much, for example, she values the handful of close friends who have not abandoned her, and her early-onset Alzheimer’s disease support group.

I also wished that she had shared more positive moments she has experienced with her husband and mother—the ways she has found to connect with their spirits. She does mention that her young grandchildren seem to understand intuitively that some of the best ways to connect with their grandfather are “just sitting with him” and playing music for him. And near the end of the book she describes how, in the middle stages of his disease, she sat with her husband and read his old research papers to him: “The words caught Harvey’s attention…It was a breakthrough, a way into his psyche. The depth of his passion for science was intact even though he had long forgotten my name.”

Despite those passages, Comer’s purpose for writing this book seems not to be to inspire hope but to show as clearly as possible why Alzheimer’s disease needs to receive the same level of attention and research funding as other major diseases—diseases which have seen a decrease in mortality rates while the incidence of Alzheimer’s disease is rising (one in three people now have Alzheimer’s disease when they die). In her role with the Geoffrey Beene Foundation Alzheimer’s Initiative, Comer is a leading proponent of research into preventing Alzheimer’s disease in people who have not yet shown symptoms, and of early diagnosis for those who do show symptoms. Her primary motivation is the desire to pull the private struggle of dementia caregiving into the light of public awareness. She has never wanted “to embellish or soften the edges around the truth. It does not do justice to the cruelty of the disease.” She believes that if people see “the real face of Alzheimer’s, they might be alarmed and offended enough to band together politically.” “Nothing I do,” she says, “is really about me; it’s all about making sure no one ends up like me.”

Honest and unapologetic, Comer helps to bring the personal trauma of Alzheimer’s disease out of the shadows. “We are all stakeholders when it comes to Alzheimer’s disease,” she says, “and we are all at risk.” As Alzheimer’s grows into the public health crisis of the 21st century, we need this kind of storytelling if we are to find the collective will to face the crisis head-on.

You can learn more about the book here.

One hundred percent of the proceeds from “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s” will support Alzheimer’s research.

Further reading:

Carrying the Burden of Longevity: Guiding a Husband and a Mother Through Alzheimer’s at the Same Time,” Jane Gross’ review of “Slow Dancing with a Stranger” in the New York Times

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