My father came to live in Washington, D.C., near me, in the spring of 2009. I went with my partner, Michael, to Phoenix, to fetch him and bring him east. He had Parkinson’s disease, or so everyone thought. He was falling regularly, which he insisted was no cause for alarm, because falling is something people with Parkinson’s learn to live with. In Phoenix, when he fell on the sidewalk or in the front driveway, passersby would stop to help him. This sometimes elicited visits from the police, to whom he would not open the door. He refused entreaties to use a walker, feeling that it made his balance worse. He insisted on driving, though his weakness and tremor defeated the mechanics of the right-hand turn. Through it all he would insist—insist is a verb I find I must work hard in this context—that all he needed was to be left alone. He would “relearn” how to walk and drive and live. Accepting help, he believed, would only cause his function to atrophy. “Use it or lose it,” he said.
Still, knowing all this about him, I was not prepared for the weakness I saw when we arrived in Phoenix last spring. He could barely dress himself, and only glacially at that. His stride had become a Parkinsonian shuffle. His shaky hands were frustrated by pens and silverware. He could not cut his own nails or shave or keep his face clean. Hearing he was leaving Phoenix, one of his friends there had called me. “Oscar needs help,” she said. “He needs someone to come in every day. He cannot live alone.” Living alone, however, was exactly what he insisted on doing. I was dubious but game to try. I imagined checking on him by phone every day, stopping by his apartment several times a week, and regularly going out with him to restaurants and theater. It could work!
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.
That was just day three.
My father was 80 then. He was a bright man, strong-willed and willful, and his strength of mind had served him well. Despite having been raised in poverty by a single mother, he got himself through college and Yale Law School, then built a successful law practice in Phoenix, where he lived for more than 50 years. After his marriage failed, he raised three children as a single parent. For decades, people had sought his counsel. You could not tell him what to do. He looked at me once, on one of many occasions when I was pleading with him to accept help, and said levelly, “I want you to consider the possibility that I am right and the whole rest of the world is wrong.”
In the late 1990s, after retiring from law and traveling the world, he had gotten into the habit of spending summers in Washington, where he had converted a midtown studio apartment I owned into his second home, nine miles from my house in suburban Virginia. He and Michael and I would spend weekends exploring Asian film festivals and Jewish theater and esoteric restaurants. As he got sicker, it made sense for him to move his base from Phoenix to Washington, because he could get around Washington without driving.
Before he arrived last spring, I did my best to prepare. I had set up an emergency-alert button, which he accepted as an aid to independence (but did not consistently wear). After a week or two of coming in and finding urine-soaked jeans on the floor and sometimes on him, I bought him some adult diapers, which he also accepted as an aid to independence (but did not consistently wear). I asked the condo building’s maintenance man, whom my father liked, to do housekeeping twice a week, an arrangement my father accepted because it struck him as ingenious and inexpensive. Through a friend at work, I arranged periodic visits from a social worker with the Jewish Social Service Agency, whose competence and intelligence my father respected. I thought I was ready, and for a few weeks, despite my initial shock over his condition, it seemed to work.
I should say that my description so far must make my father seem nothing but stubborn. He was stubborn, but he was also charming, resourceful, generous, kind, funny, uncomplaining, and good at making friends and allies of those around him. By enlisting friends and learning to cope, he had managed on his own longer and better, certainly, than I could have done. He had consistently proved wrong those who told him what he couldn’t do. And Parkinson’s, his doctors assured us, was a slow-moving disease. Expect only gradual change.