What is it like to care for a person with dementia? For most people, it can be hard to imagine the daily struggle, the exhaustion, the emotional pain. And in truth, recent portrayals of Alzheimer’s in books, newsprint, and advocacy pleas have shied away from showing the progression of the disease as it truly is; some give the impression that the worst of Alzheimer’s is a patient sitting in a wheelchair or lying in bed with a vacant stare. It is not—and Meryl Comer’s upcoming book makes this utterly clear. In Slow Dancing With a Stranger (HarperCollins Publishers, 2014), she offers a glimpse behind closed doors at the raw, difficult reality of day-to-day life with an Alzheimer’s patient. The book will hit stores September 2, but is available online for pre-order.
With a mix of scorching honesty and introspection, this business journalist-turned-Alzheimer’s advocate describes her 20 years of caring for her husband, Harvey Gralnick, who in his 50s developed early-onset AD with behavioral symptoms. Within a few years, Gralnick went from being a respected cancer researcher at the National Institutes of Health and a sophisticated lover of life to a lost man who no longer recognized his wife and would smash in her teeth in one of his many violent outbursts. As she cared for her husband at home, Comer became a virtual prisoner to the disease. The “stranger” of the title is Alzheimer’s, which slowly robbed the couple of their normal lives.
Gralnick’s journey mirrors that of many dementia patients. As is common in early onset disease, at first no one understood what was wrong. Comer recounts the early signs: memory lapses, unprovoked anger, getting lost on familiar roads. Although Gralnick’s erratic behavior caused mounting anxiety, he had no diagnosis, and Comer could do nothing to rein him in. Getting the correct diagnosis would take several agonizing years during which Comer resorted to furtive measures, such as disconnecting Gralnick's car battery to keep him from driving after he had multiple small accidents. As Gralnick’s confusion deepened and his social filters failed, he lost his job. At home, he would fly into rages and attack his wife; on trips outside, he would urinate in public without shame.
As Gralnick deteriorated, Comer turned to institutions for help, but found the options unacceptable. One nursing home sedated her husband into a stupor, while a better, more humane facility was prohibitively expensive in the long term. Comer brought her husband home, hiring nurses to help with daytime care. To raise awareness for the harsh reality of dementia care, she allowed the TV show PBS NewsHour to film her at home with her husband.
At-home care exacted its own price. Her husband’s nighttime agitation meant that Comer slept little for years. She abandoned her career as a journalist, while paying for the nurses drained her savings. Compounding her burden, during this time Comer’s mother developed dementia as well. Her mother wanted to live independently, but mounting paranoia led her to call the police and report she was being kidnapped. A live-in caregiver broke down after a few weeks, delivering her to Comer’s house and resigning on the spot. So Comer took in her mother as well, caring for two dementia patients. Over the years, Comer dwindled to a shadow, dressing in black and rarely smiling.
Activism gave Comer a second lease. The book’s final chapters describe her philanthropic work with the Geoffrey Beene Foundation Alzheimer’s Initiative and the advocacy group USAgainstAlzheimer’s. Comer herself now participates in a longitudinal study to track age-related cognitive change. As she writes in her book, “My greatest fear is that mine will be the family next door by mid-century … My advocacy is all about making sure no one ends up like me.”
All proceeds from Comer’s book will support Alzheimer’s research. See the video trailer. —Madolyn Bowman Rogers
Book page Citations
- Interview: A Diagnostic Odyssey
- Interview: A Spouse's Perspective on Clinical Trials for eFAD
- Interview: A Courageous Family
- Interview with Lisa Genova
No Available Further Reading