We took our fourth child off the machines to let him die when the doctors told us he would never change. He had been born way too early and suffered severe brain injury, to the point that he just had basic autonomic functions, no brain activity. “He is just operating on his brain stem,” they said. “It’s cruel; he coos and gurgles like a normal baby, but he will be doing that when he’s 70.”
I am reminded of that conversation now that my mother has come to live with us. She is 88 and suffers from dementia. Every day with her is like that baby that died long ago; the same thing, with no hope of change. “What day is it?” “Tuesday.” Five minutes later, “What day is it?” a hundred times a day. The same with a dozen other questions, repeated at intervals though the day.
My mother’s dementia is especially cruel because in other ways she presents perfectly normally, like our long-dead son. She is very sharp and can hold a conversation on a subject that doesn’t require memory perfectly well, so much that it is easy to forget the dementia. Until, in another five minutes, the question, the one that has been answered a dozen times that day.
Also like caring for a brain-damaged child, caring for a parent requires near-superhuman reserves of patience. “What day is it?”
“TUESDAY” I want to scream. “It’s fucking Tuesday like it was five minutes ago! TUESDAY TUESDAY TUESDAY” I want to pound the walls. Scream. But I don’t. I just capture the image of when I was helpless and entirely at the mercy of her love and care, when I was the infant and demanded the same things from her, again and again and again, until I am sure she wanted to scream and pound the walls. But she didn’t.
“Tuesday, Mom. It’s Tuesday.” It will always be Tuesday, here in my house.