A blog about books (both non-fiction and fiction) that address forms of social inequality associated with race, gender, class, or mental health.
Book Review: Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s (HarperOne, 2014) by Meryl Comer
Slow Dancing with a Stranger was published earlier this month, and all proceeds will be donated to Alzheimer’s research. In this memoir, Meryl Comer writes about taking care of her husband, Dr. Harvey Gralnick, who developed early-onset Alzheimer’s and has been living with the disease for the last nineteen years. My dad has been living with Alzheimer’s for ten and a half years, so I was very surprised by how long it took for Comer’s husband to initially be diagnosed and receive treatment after he started showing signs of Alzheimer’s. It took at least four years. This was due, in part, to denial and pride — her husband was a doctor and researcher who worked for the National Institutes of Health. Alzheimer’s was also not really part of the public vocabulary twenty years ago. By the time her husband was diagnosed, he no longer had the capacity to sign any legal papers or make his wishes known regarding things such as “do not resuscitate” orders. Comer was left to navigate various legal and financial issues alone.
Around the time of Gralnick’s diagnosis, his illness had progressed to the point where Comer could not take care of him by herself. In her quest to find a long-term care facility for her husband, she experienced quite a bit of hardship. Facilities that specialize in care for Alzheimer’s patients can either refuse to accept a patient or kick a patient out if they deem the patient as too difficult to handle. Some of the experiences that she had in her search for a facility were outrageous. Because her husband’s behaviors were so difficult to control, several facilities turned him away. Ultimately, she was able to strike a deal with a facility that allowed her to place her husband there if she also found and paid for private nurses to be with him around the clock. The fact that she had to strike this kind of deal with them makes my blood boil. How is it possible for an organization to specialize in Alzheimer’s care and yet absolve themselves from taking on the most challenging cases? What are family members supposed to do? Comer points out that many of these facilities make their decisions through a lawyer’s eyes. When discussing the facility’s documentation of her husband’s difficult behavior, she says:
I read these memos in anger and also sadness. I had come to realize that patient summaries told only half the story. They were designed to protect the institution if someone complained. I knew that Harvey’s illness made it impossible for him to control his behavior….Still, I kept silent. If I complained or drew attention to Harvey’s actions, we would be asked to leave. It was clear that our days there were numbered. Facilities like Kensington Park did not have the manpower that someone with dementia needed. Staff was constantly turning over, and it was hard to make a personal connection with Harvey, who resisted being fed or washed or changed, even by us (p. 97).
After trying out two different facilities that specialize in care for Alzheimer’s patients, Comer ultimately brought her husband home and paid professional caregivers to take care of him there.
Although caring for her husband forced her to leave her job, the book illustrates that Comer has known a lot of financial privilege in life. Her husband had no long-term care insurance, yet she has been able to hire a staff of four part-time nursing assistants who help her to care for her husband at home. She renovated her home so that it would be easier to care for her husband there. A friend in Paris was able to help her obtain a drug (Memantine), which, at the time, had not yet been approved in the U.S. but was sold in Paris for two hundred dollars per pill. Meanwhile, she spent a period of time paying for an apartment so that her mother — who was also diagnosed with Alzheimer’s — could live nearby. The various things that she has been able to finance are unbelievable, yet the book does not delve into the issue of social inequality — what are working class or poor families (or even middle class families) supposed to do if their loved one ends up with Alzheimer’s? It seems that very few people would be capable of financing all of the things that the author of this book has been able to finance. Nonetheless, she describes feeling overwhelmed financially and ultimately sold off most of her assets in order to pay for her husband’s care. Although she does not provide much discussion regarding why she removed her husband from the second long-term facility where she placed him, it seemed to be due to finances. She says:
I had budgeted for full-time private duty nurses, doctor visits, diapers, medication, and even special medical equipment because the Medicare-issued portable commode and wheelchair didn’t fit a man Harvey’s size. When I opened the bill for the first month at Copper Ridge, the total for the care and the private nurses came to $15,000. It didn’t take too long to do the math. My bill for his 0ut-of-pocket care would run $180,000 annually. Here we were two adults in our prime and both out of work due to circumstances beyond our control. The fees to keep Harvey at a facility I trusted were simply beyond our financial means.
The situation reminded me of a similar predicament twenty years earlier, when my younger brother over-dosed on prescription meds at college. I will never forget being rebuffed at admissions to Sheppard Pratt, a private psychiatric facility outside of Baltimore. They required a $10,000 down payment to admit him. It was money neither my mother nor I had….
Eight hours later, I signed my brother out of the hospital, laid him in the back of my gray Nissan van, and took him home with me. In the end, my repeated rescue efforts over the next four years failed. Long after his death, I often wondered if the outcome would have been different had we had the money. Now when I thought about Harvey’s situation, the same questions haunted me (p. 116 – 117).
Comer also expresses a concern that all families impacted by Alzheimer’s probably share, which is the fear that professional caregivers will not honor the dignity of the human person in the way that they should. My dad, who began living in a long-term care facility about a year ago, wears a baseball cap on his head that says U.S. Marines. The cap, which reflects his former service, is a symbol of dignity that stands in contrast to the undignified nightmare of a disease that he endures. Similarly, Comer points out that she dresses her husband in a way that will remind caregivers of his previous status:
As we prepared for what was expected to be a short hospital visit, Harvey was more anxious than normal. I dressed him like a gentleman right down to his best cologne, so the nurses would treat him with respect. Even if they didn’t know who he was, they would be able to tell that he was someone of stature, even if he now had trouble getting dressed and kept repeating himself (p. 67).
Her reasons for dressing him this way are understandable, but it’s unfortunate that we don’t live in a society that honors the dignity of all people regardless of the condition of their mind or body. Pope Benedict XVI wrote of the need to advocate “for the recognition of the human person in the dignity that is due to him or her from the sole fact of existence, of being willed and created by God, and not for his or her usefulness, power, beauty, intelligence, wealth, or health” (p. 389 in The Essential Pope Benedict XVI: His Central Writings and Speeches). Unfortunately, we don’t live in a society in which people are valued simply because they were willed and created by God.
In addition to caring for her husband and mom, she also lives with the possibility that she may develop Alzheimer’s someday. Because her mother has Alzheimer’s, Comer obtained genetic testing and discovered that she carries a genetic marker for the disease. However, it’s important to avoid assuming that she and her family represent some sort of unfortunate anomaly. Their story is a reality that will become more and more common in the U.S. as Alzheimer’s continues to become a growing epidemic. Their story depicts a societal problem. In the United States, someone develops Alzheimer’s every 67 seconds. Approximately 5.2 million Americans currently live with the disease. Unless an FDA-approved drug is developed to slow progression of the disease, that number may triple by the year 2050. Last spring, the New York Times suggested that ageism helps explain why there is so little push for medical advances.
Overall, the book touches on many important issues — caregiver stress, financial stress, feelings of stigma that families experience, questions of how long a spouse should maintain his or her marriage vows, lack of public advocacy surrounding the disease, and lack of public awareness regarding what it’s like for caregivers to provide care for someone with the disease. Comer was encouraged to write the book after she was depicted caring for her husband in “War on Alzheimer’s,” which aired on PBS. She wanted the public to be exposed to the realities of the disease. Here are some brief clips:
Meryl Comer makes some comments about her book in the following brief video clip: