By last year, however, the disease was moving fast. He would eventually be rediagnosed with a particularly nasty neurological torment called multiple system atrophy, but that was later, near the end. Until the last couple of months, no one realized how sick he was, and so his resistance to impingements on his independence was understandable. Shame was another reason he wanted to be left alone. As he confessed to me more than once, he felt ashamed of his condition. One of the few times he ever cried in my presence was when he saw me on my knees, scraping hardened ice cream or jam, or whatever it was that day, off the floor. “I’m sorry,” he said. “I’m sorry. I never meant for you to scrub the floor for me.”
In the early weeks, I was protective of his independence. He believed that confinement in a nursing home would kill him, and I understood that his autonomy was the thread by which his emotional health hung. But his motor control was not cooperating. By summer, he was having trouble getting out of bed. Many days, he relied on the maintenance man to dress him, or never managed to dress properly at all. On several occasions, I arrived in his apartment to find him lying on the floor, unable to get up. He was no longer able to manage his own mail or appointments. Often his slurred voice on the phone was barely intelligible. When I called, he would manage to pick up the phone but said only “I can’t hear you! I can’t hear you!” before hanging up.
I came to dread the ring of the telephone: it might be my father on the floor, asking me to come over and pick him up, or it might be emergency medical services, summoned by a neighbor or the call button. Once, when I arrived amid a commotion of paramedics and flashing lights, a neighbor, herself elderly, was standing in the hallway, her face flushed with fear, yelling to me, “He can’t live here! You’ve got to move him!” In the midst of it all, my father would be entreating everyone to leave him be.
My professional work all but stopped. Finding doctors for him and getting him to appointments and coordinating escalating medical needs swallowed entire days. I managed until one hot July afternoon. I was at my desk closing a column when Michael called from Costco, where he had taken my father shopping. My father had gone stiff on one side, become incoherent and unable to stand, and didn’t know where he was. I had to get over there, Michael said, in a quietly frightened voice. 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. And I discovered in myself an awful determination not to let that happen. From that moment, I was determined to get him out of his apartment and under professional eyes, or, failing that, to protect myself. How to protect myself, I didn’t know. Hire help over his objections? Take him to court and seek to have him declared incompetent? Report him to Adult Protective Services? Use my ownership of his apartment to force him out? All I knew was that, at that point, I believed myself capable of doing such things, or even of washing my hands of the situation if he would not listen to reason. I imagined telling an indignant world that I had tried my best and could do no more. You have no idea what a thing it is to have that sort of conversation with yourself about a parent.
In hindsight, I was ripe for post-traumatic stress syndrome or anxiety disorder or depression. According to the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University, family caregivers face elevated risks to their physical health, mental health, finances, employment, and retirement. I can attest to the mental-health risk. That I managed to keep myself together owes itself largely to a coping strategy of my own—one that brought with it a peculiar discovery.
For whatever reason, and quite against my usual introverted nature, I talked. To almost anyone. A provocation as simple as “How are you?” would educe an answer like, “Bad. I’m at my wits’ end coping with my father.” Out could come the whole story. Though I tried not to be too socially inappropriate, I must have discomfited a lot of people. But I discovered that I had to talk. And I discovered that when I talked, other people talked too.
I got advice and tips: mix coffee with yogurt if he likes the taste of coffee but has trouble swallowing it; here’s the name of a geriatric case manager who’s really good. This kind of practical wisdom was useful. But why, I began to wonder, did I have to collect it on the street?
I got amateur counseling: take care of yourself first; don’t try for perfection. Good, tough, compassionate advice, but randomly proffered. How much more was there that I needed to hear but that no one happened to tell me?
Above all, I got stories. Some were in the past tense, but a surprising number were in the present, and they gushed forth with the same kind of pent-up pressure that I felt. Washington is a city of middle-aged careerists like me, proper and dignified and all business. Yet time and again the professional exteriors would crack open to reveal bewildering ordeals.
A lobbyist. At a reception hosted by his trade group, he asks what I am working on, and I reply, “Taking care of my father.” Without missing a beat, he tells me of having spent that morning in tears, sobbing in a meeting with the staff at the care facility where his 100-year-old father now lives.
A scholar. He is working on a book about interest groups and we go out for coffee to discuss it. He asks how I am. When I tell him, our original agenda melts away and he tells me that his life’s work, now, is flying back and forth to remote Wisconsin, where he takes care of a father with Alzheimer’s. He has had to move his father, sell the house, find a care place, deal with his father’s affairs, all while trying to do his professional work and raise his own kids. I tell him that, for me, the biggest problem is not so much the time spent on my father’s crisis as the distraction, the inability to concentrate or focus. “It’s my work which is the distraction,” he replies ruefully.
A journalist. He stops by my office, plops in a chair, tells me he has heard about my situation and wants me to know he admires what I’m doing for my father. Thanks, I say. But he continues. His parents are 80-ish. They are managing, but just barely. The situation is teetering toward crisis. They need to move or accept help, but his father is too proud to consider it, and the journalist and his siblings don’t know how to raise the subject. He needs advice, which, with the benefit of my several months of experience, I do my best to give. Don’t wait any longer to deal with this, I tell him. Push your parents harder than you feel inclined to push, I say. What I am thinking, of course, is: What you really need is a better adviser.
As I walked the streets, did interviews, conducted business, 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.