I’d heard the news about women and memory loss by the time my sister sent her foreboding e-mail — “a little scary, sisters” — with a link to a story headlined: “Women Descend into Alzheimer’s at Twice the Speed of Men.”
One in six women has a chance of getting Alzheimer’s by age 65, compared with one in 11 men. I recognize that truth every time I count the female heads at our mother’s memory care building.
What is less in the news — but ever-present in the lives of thousands of Baby Boomers, the majority also women — is the stress of caring for a loved one with Alzheimer’s.
I’ve been my mother’s primary caretaker since February 2012, when she was diagnosed with the disease. I get the 6 a.m. phone call when she refuses to take her shower. I press the doctor about why he prescribed an anti-depressant without consulting me. I clean the toilet and the sink every time I visit.
These chapters of my life are writing themselves as I rush through them. Unlike my journal, I rarely linger long enough to reflect on how I really feel. All I can hope is that my sons observe the constancy and discipline, and that, one day, they will do the same for me.
Chapter 1: The Professional Caregiver
I joined 40 other scared, sad middle-aged people at a talk in late April by Charles Schoenfeld, a Wisconsin-based author who retired from truck driving and studied to become a certified nurse assistant in dementia wards.
“Human kindness can often reach where medicine and textbooks cannot,” said Schoenfeld, the only man in his CNA classes. “It takes a special person to work in these facilities.”
We daughters and sons or spouses and partners were invited that evening by a physicians’ group that services upscale memory-care facilities. But 800,000 people in the United States who have dementia live alone, without benefit of the long-term-care insurance that allows my mother to reside in a well-appointed place with daily activities, on-site nursing care and an aide-to-patient ratio of 8:1.
The cost of $5,500 a month will drain her financial resources and exhaust her insurance within five years. At that point, if she’s still living, county assistance will kick in.
“So, what do low-income people do who have Alzheimer’s or dementia?” I asked Schoenfeld, adding that every resident but one at my mother’s home is white and all of the aides are people of color, many of them first-generation immigrants.
“That’s a head-scratcher,” he said, clearly not expecting this twist at a white-table-cloth dinner hosted at a country club. Next question?
Chapter 2: Caregiving and Work
It would be dramatic, and inaccurate, to say I downsized my career a year ago solely to care for my mother. It is absolutely true, however, that a non-management job — and the 15 hours a week it nets me — makes my time with her more possible and more pleasant.
Now that Mom can no longer shop or talk politics or converse on the phone, I focus on what we can do. I wash and style her hair when I visit. I attend and sometimes lead the seated exercise class — and tear up when the residents close by singing multiple verses, from memory, of “You Are My Sunshine.”
Mom has lost 12 pounds in six months as the disease has claimed her appetite and sense of taste. I sit with her at mealtime and urge her to eat. I bring her candy bars and sugared coffees from the Caribou nearby.
I’m grateful for those moments when my maternal instincts take over, when I sit beside her on the bed and rub her shoulders or stroke her cheek. When I am thinking less about my loss than her own. And I do it all unquestioningly and mostly without complaint. I take the responsibility as seriously as I did my duties to my children.
“Working at home,” “on vacation” and “sick child” are among the dozen or so descriptive magnets on the check-out board at work. Not one of them says “elder care” or “Alzheimer’s” or “gone to see my mother while some shell of her is left.”
Work-life balance is still defined as moms with kids.
Chapter 3: Caregiver Support Group
The first time I heard about the caregivers’ support group at The Alton Memory Care, where my mother lives, I pictured the group therapy sessions on The Bob Newhart Show of the 1970s. Kooks and cranks sitting awkwardly in a circle while a droll, befuddled expert tried to lead them back to mental health.
The image amused me till I recognized the kook and crank inside myself — and felt my resistance and resentment at having to sit around that table.
- How many stages are there? (“Most experts say seven.”)
- What’s the difference between Alzheimer’s and dementia? (“The former is a subset of the latter.”)
- How is Lewy bodies dementia different from Alzheimer’s? (She had me there.)
“What does it matter?” I finally asked her, as kindly as I could. “You won’t be able to predict the course of this disease. Your mother will have good days and bad days. Every time you see her will be different.”
Our group leader steered us back to the strengths of people who have dementia. They live in the moment, observe non-verbal cues, always appreciate music and experience a range of emotions.
I note the absence of emotion every time I leave Mom’s building. I turn off the car radio and drive home stony-faced, in silence, seeking the distance between myself and the inevitable.