I’m late getting to reading my subscription to The Atlantic, so I’ve only just read this article from the April issue: Letting Go of My Father. It’s about the author’s descent as he suddenly discovered that his father was badly in need of assistance because of his Parkinson’s. Living in Phoenix, while the author lived in Washington, D.C., combined with stubbornness, an ability to make friends and obtain help from other people, and an intense desire to live independently, the author’s father was able to live alone much longer than was safe.
So when his dad finally moved to D.C., the son found himself plunged into a world in which he had no experience and no understanding of how to be the caregiver his father needed.
Three days after he arrived, I entered his apartment and found in the bathroom a plastic bowl full of feces and urine and soiled baby wipes. The vanity and floor were smeared with brown. This, apparently, was part of his process of relearning how to use the bathroom. He insisted he would clean up the mess himself, forbidding me to touch it, an instruction I defied, since he tended to fall when he bent down. In the kitchen, most of a pint of two-day-old ice cream lay hardened into a sticky goo on the floor where it had fallen, out of his precarious reach. He insisted he would clean that up, too, and just hadn’t got around to it. Meanwhile, he had dropped a sheet of paper towel over the mess.
The author seemed unable to get ahead of the curve, so to speak. He couldn’t adapt to the situation quickly enough, and while he learned, he father kept getting worse. Then, he received a call from someone out with his father. They were at the store, and his father had gone stiff on one side.
I jumped up and ran out, but by the time I arrived my father had recovered and did not remember anything untoward happening. “Do you need to see a doctor?” I asked, stupidly. He just gave a dismissive wave of his hand. “I’m okay,” he said. I stood there, in the produce aisle, with no idea what to do, frightened by my incompetence and, worse, furious at my father for putting me in this impossible position. That was the day I realized that he could not cope and I could not cope and, emotionally, he could take me down with him.
It was here that the author put his father in an assisted living facility. It worked out for the best, allowing dad to get the care he needed, which made him a more independent person, while allowing the son to focus on being son instead of caregiver.
Through the experience, the author found he needed to talk about his caregiving and the emotional and professional strains it was putting him under. He started telling people, willy nilly, at first, because he just needed to say what he’d been going through. And then he discovered a mass of similar silent sufferers.
I took to wondering which of the middle-aged people I encountered were quietly struggling to cope with their own crisis. How many of them felt utterly out of their depth? How many others, having come through an ordeal, had experience that they had no ready opportunity to share? According to the National Alliance for Caregiving, about 50 million Americans are providing some care for an adult family member. I was swimming in an invisible crowd of caregivers every day, but, like streams of photons, we passed through each other.
So, we need to bring this out into the open, he says. We need to talk about it, share experiences, share help, find resources and assistance. We shouldn’t all be doing this in silence. He complains about the cultural expectation that these issues are not for polite conversation (though I suspect this may be true only in places like the upper crust of D.C., where people are their careers and nothing more.) “I am now convinced that millions of middle-aged Americans need more help than they are getting,” he writes, “and that the critical step toward solving the problem is a cultural change akin to the one demanded by feminists in the 1960s.” These feminists, he argues, “demanded and got a new infrastructure for support: opportunities to study and work at home, part-time job opportunities, public and private help with child care, social networks, and so on. Perhaps more important, they demanded and got society’s recognition that they were providing an indispensable public good.”
I think he’s right. Aside from the exactness of the parallels to boomer feminists (I know enough caregivers who would not be thrilled with the comparison) the need for a new infrastructure of support is significant. Caregiving is real work, done mostly by family members unfamiliar with the tasks involved and unprepared for the stresses.
It’s time to start talking about how we care for our elderly and dying and how we can do it better.