My father doesn’t recognize us. He doesn’t know where he lives. He used to be self-sufficient. Now he needs supervision 24 hours a day.
He has Alzheimer’s.
My father-in-law Cecil doesn’t recognize us either. He doesn’t know where he lives. He used to be self-sufficient. Now he needs supervision 24 hours a day.
He has Alzheimer’s.
Dad doesn’t remember teaching anthropology at Antioch College. He doesn’t remember living in Hiroshima to study the effects of the first atomic bomb on the growth of Japanese children. He doesn’t remember writing and producing plays, writing books, winning a tri-state tennis championship or designing a yacht and sailing it around the world. He doesn’t even remember what he takes in his coffee.
My father-in-law Cecil doesn’t remember being the real estate broker who put in 50 Safeway supermarkets around Southern California. He doesn’t remember building his own real estate investment company from nothing. Sometimes he takes his coffee invisible, from an empty cup.
I have to remind Dad to take showers. I lay out his clothes. I dole out his pills. The man who used to be decisive, who used to tell others what to do, asks me, “Is it all right if I take a nap?” When I take Dad out to lunch, I remind him that I’ll drive. I open the car door for him. I show him where his seat belt is and remind him to fasten it. At the restaurant, he asks me to order for him. Sometimes I have to cut up his food or wipe his mouth.
My father-in-law has someone come in twice a week to give him showers and dress him. When I take him to lunch, I remind him that I’ll drive. I open the car door for him. I fasten his seat belt. I order for him. Sometimes I have to cut up his food or wipe his mouth.
Sometimes Dad talks about losing his memory. He says it is like being dead while he’s still alive. Sometimes he cries. Sometimes Cecil talks about losing his memory. He says he isn’t smart anymore. Sometimes he cries.
They are anxious and afraid, both of them, because every moment is like waking up in a world they don’t know, among strangers. We are afraid for them, for us, because ahead is probably incontinence and wheelchairs and death.
For each of them, a faithful wife has been the one touchstone of reality, the main source of comfort, although they sometimes forget her name. Since they don’t know where they are or what they are supposed to be doing, they stick close to someone who does know, who can put things into context. For the wives they live with, it can be suffocating, but neither wife easily surrenders the caregiving, even temporarily.
Dad’s wife took care of him until her own terminal cancer was so advanced she had to be hospitalized. Then she called me up to Northern California to take over. He does not remember my stepmother’s name. He does not ask about her. He does not know what it is that he has lost. When he starts up in the night and asks suddenly, “You okay?” he means “Am I okay?” Am I alone? If there is another presence here, is it friendly? Will it take care of me?
“I’m here, Dad,” I assure him. There is a friendly presence here, linked to you by blood, and everything is under control.
I gave my dad a note to carry in his wallet, reminding him why I was here with him and his wife wasn’t. Each time he read the note it hurt as much as the first. Each time he said, “Oh, my God!” and began to cry. How can I bring myself to tell him she died this morning?
There are some compensations for us caregivers. I could feed Dad the same meal every night and it would always be new. He can read the same newspaper five times a day. I can tape a tennis match or baseball game and play it when no tennis or baseball is on and he enjoys it just as much. My father can still carry on a conversation. Sometimes he can still beat me–soundly–at Scrabble. His sense of humor is intact, though I don’t see it much anymore.
When he asked why my husband wasn’t having ice cream with us and my husband said, “I can’t have sugar,” Dad grunted, “Eat around it.” But after the Scrabble games, he forgets we played and right after we laughed at his joke about the sugar, he asked my husband again, “Why aren’t you eating with us?”
My father-in-law can’t make himself understood much any more. He talks about things like the place where “the alphabet meets the corner.” But sometimes, without knowing it, he makes poetry. Once when we were driving together he commented to me thoughtfully, “Nothing tastes quite as good as a sunset.”
Soon Dad will need full-time professional care. Soon Cecil will need full-time professional care. I hope the staff who deal with them will have patience and compassion and make their now the best it can be, because they are each in a scary universe. One they can’t even share with each other.
From my article, “When a daughter and daughter-in-law is the caregiver,” in the Long Beach Press-Telegram, 7-24-1999. I wrote a novel about caring for my dad called New Every Morning (sub-title: “He hurt her. Now he is at her mercy. A new kind of love story.”)
2013 P.S. Dad and Cecil are both long gone. Last year Cecil’s wife’s own dementia required putting her in a nursing home. Jerry and I visit her every week and when she sees us her face lights up. We work a crossword puzzle with her and between the three of us we can usually finish the one in the Press-Telegram. When we leave she forgets we came.