When I was still young enough to pay attention to the things my mother and father said, I would listen each night to their conversations across the dinner table.
Don’t you ever put me in one of those places, she said.
Don’t put me in one of those places, my father replied.
As much as I remember anything about my boyhood, I remember this call-and-response of my parents most every night…The nightly exchange became a refrain in the soundtrack of my upbringing, repeated until it held the power of incantation. In time my sisters and I would even give it a name: the Promise.
For a long time, one could hardly tell he had Parkinson’s. He still jogged, he still played golf badly with his son-in-law, he still went to work, he still wrote my mother letters in his jagged, doctor’s handwriting. He was still his Sweetie’s caffeinated, wordy Ja, banging away on the Steinway as she sang from the kitchen. All the while, the disease chewed at him insistently from the inside, like termites in the walls.
As things began to worsen for him, my father never once complained. Not about the pain he felt, nor the depression that descended. He didn’t shake his fist at the indifferent God he prayed to every night. My mother marveled at this.
Her days, and her nights, now revolve around him. She drives him to the doctor. She dispenses his baffling array of medications. She lifts him into the shower and she bathes him and she dresses him and she launders the clothes he has soiled. She rises at 4 a.m. to begin again. She is a moon in furious orbit around a collapsing star. She is 80 years old now. He is 82.
The way she cares for him, he will live forever.
The way she cares for him, she will not live much longer.
She has shingles now, and skin cancer, and tendinitis in both forearms from years of lifting him. I can’t feel my fingertips, she says, amazed. She has not had a full night’s sleep in six years. At the moment she also has a head cold.
What my research participant made clear to me that day is that the lack of robust and accessible social programs for long-term care is merely a...