Slow Dancing with a Stranger: A Caregiver's Account of Alzheimer's Cost
September 9, 2014 | Focus on Women
The symptoms were hardly noticeable at first. In fact, had Meryl Comer not been a veteran TV news reporter, she might have missed the subtle changes in her husband’s behavior. Even then, she chalked up his sudden lack of focus and lightning-quick temper to job stress: Harvey Gralnick had a prestigious position as a physician and chief of hematology/oncology research at the National Institutes of Health. Two years and countless medical exams later, Comer’s husband finally was diagnosed with early-onset Alzheimer’s. By that time, the disease had already scrambled their lives and dashed their dreams. Gralnick was 57; Comer was just 50.
If Alzheimer’s is about forgetting, Comer’s just released book, Slow Dancing with a Stranger, is about bearing witness to everything Alzheimer’s took from her husband and her family. Equally important, it’s a call to action for women who, as caregivers, are most often Alzheimer’s second victim. What distresses Comer is that there are no better options for women today around care than there were 20 years ago. There are still no disease-modifying drugs or treatments for Alzheimer’s, a fatal neurodegenerative disease that has no cure.
Does Gender Matter?
According to the most recent Alzheimer’s Association report, 2014 Alzheimer’s Facts and Figures, Alzheimer’s disease disproportionately affects women. Two-thirds of the disease’s sufferers are female, and two-thirds of the caregivers are women across ethnicities.
The report also found that Alzheimer’s disease impacts women in another significant way: They’re more likely than men to assume the role of unpaid caregiver to a family member or loved one with Alzheimer’s. The long-term impact of this decision can be overwhelming physically, emotionally and financially, especially when the caregiver lives with the care recipient and is on duty 24 hours a day.
As Comer describes in her book, when Gralnick’s condition rapidly deteriorated, she quit her job and assumed the role of her husband’s primary caregiver, upending her professional life and the financial security they had carefully built together.
Alzheimer’s Second Victim
According to the Alzheimer’s Association, 15.2 million Americans provide nearly 22 hours of unpaid care per person per week. Nearly half (47 percent) of women and 24 percent of men surveyed considered caregiving to be physically stressful, while 62 percent of women and 52 percent of men said the same about the emotional stress. While both women and men are caregivers, the economic toll is often harder on women, who are more likely to be in a situation that leads them to leave the work force earlier, thereby losing contributions to a retirement plan and Social Security.
In Comer’s experience, it’s easy for the well spouse or family member to lose touch with his or her social networks because of the 24/7 care demands. This can lead to isolation, which can be just as unhealthy for caregivers as it is for the people for whom they’re caring. “It’s not surprising that two-thirds of all caregivers experience burnout and exhaustion, anxiety and depression,” said Comer.
The Alzheimer’s Association study also found that behavioral issues, which manifest more often in men, lead to a higher burden of physical and emotional stress for women. “As your loved one’s cognitive, physical and functional abilities diminish over time, it’s easy to become overwhelmed and neglect your own health and well-being,” warned Comer. “Yet the demands of caregiving can put you at increased risk for significant health problems, such as heart disease and stroke. And researchers are now looking into whether caregivers themselves are at a greater risk of ultimately developing Alzheimer’s.”
Turning Tragedy into Change
Comer was 48 years old when she gave up her career to care for her husband because there were no affordable or suitable care options at the time. Her frustration is that 20 years later, nothing has changed; There are no disease-modifying therapies for this fatal, neurodegenerative disease. The average caregiver today is 48 years old, and quality care support is still limited and expensive. “Our adult sons and daughters with young families are wrestling with the same issues and deserve better options,” said Comer. She has “flipped her pain” to become a leading voice in the war against Alzheimer’s and an unflinching advocate for caregivers.
She has written for medical journals on the human toll of the disease; allowed PBS NewsHour to come into her home and capture on film what it’s like to care for someone with Alzheimer’s; and testified before Congress and joined a task force charged with setting national priorities for disease. Seven years ago, she became president and CEO of the Geoffrey Beene Gives Back Alzheimer’s Initiative, a donor 501c3 organization focused on early diagnostics, prevention and major public awareness campaigns. One of these campaigns is the award-winning Geoffrey Beene’s Rock Stars of Science™, which puts rock stars alongside the country’s top medical researchers to inspire a new generation of scientists. Another is the pioneering HBO documentary series, The Alzheimer’s Project, which helped alert mainstream America to the coming Alzheimer’s epidemic.
The Final Word
If Comer’s work has made her a public face in the fight against Alzheimer’s (she is also co-founder of WomenAgainstAlzheimers), her new book Slow Dancing with a Stranger reveals the more personal side of her journey as caregiver to her husband and, more recently, also to her aging mother.
Comer candidly describes the destructive progression of this disease on the patient, caregivers and families. She writes of her frustrations with the lack of affordable care options and a medical community that too often makes it difficult for families to get a firm diagnosis. But most importantly, she writes with clear eyes and an open heart about the sense of honor gained by protecting a loved one’s dignity, about how it feels to mourn someone who is alive but no longer “here.” In doing so, she echoes the truth of poet Maya Angelou: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” In Slow Dancing with a Stranger, Comer shows why the same is true about Alzheimer’s.
One hundred percent of writer proceeds from Comer’s book, Slow Dancing with a Stranger, will support Alzheimer’s research.
See more from Meryl in the Webcast The Retirement Wild Card That Can Derail Your Plan.