Yesterday, I participated in an AARP program with several authors of books on caregiving. One fellow panelist, the novelist Walter Mosley, was wonderfully provocative as he reflected on what he calls “the great equalizing effect of great age.” Mosley, whose mother was Jewish and whose father was black, put it this way: “White people become black people when they can no longer care for themselves.” The older you get, he added, “the more you move into the Third World–” marginalized by the rest of society.
Frances Norwood, who has written about end of life issues, calls this phenomenon social death: The idea that many frail elderly and younger people with profound disabilities the human connections that make life what it is. Before they physically die, they are discarded by friends and even family, become defined by their disease, and lose all control over their lives as decisions are made for them by others.
In his recent novel The Last Days of Ptolemy Grey, Mosley puts readers into the soul of a 91-year old man with dementia. Ptolemy lives alone in an apartment filed with the memories his mind can no longer manage. He is a hoarder. He can’t bathe himself and because his toilet is stopped up, he must urinate in a cup and wait until someone can take him to a nearby restaurant to defecate. But Ptolemy has things he wants to say and to do. There is still, behind the dementia, a man.
Before the program, I asked Mosley where he got the idea for Ptolemy. He told me about his mother who had dementia and his struggles to care for her. Later, he told another story: His mother had never been able to say she loved him. I know she did, Mosley remembered, but she could never express it. As her dementia progressed, Mosley would call her three times a day. And he’d end every call by telling his mother that he loved her.
For three or four months, he remembers, she’d never respond. But when day, he said, “I love you momma.” And she answered, “I love you Walter.”
As I cared for my own father, I found small events such as this extraordinarily powerful. In some way, they wash away the stress and despair that so often accompanies caregiving. They are, as Mosley says, “moments of incredible intimacy you wouldn’t have experienced otherwise.”
My fellow authors and I provided a wide range of views on caregiving from our varying perspectives as physicians, advocates, novelists, journalists, or researchers. Yet, we each have been caregivers ourselves. And Mosley spoke eloquently for us all—not as long-term care experts, but as wives and daughters, and husbands and sons.