Excerpted with permission from "The Caregiver: A Life with Alzheimer's," published by Steerforth Press.
I did not need to be entertained or have my time more occupied than it was, nor did I feel the social need to be among my spousal peers. I joined to hear the experiences of other caregivers, and in trade for theirs I expected to disclose some of mine.
Strangers though we may be, knowledge of what it is to live with Alzheimer's in the house tends to make us easy with each other. It is different here from with friends who ask, "How are things going?" and wait a little longer for an answer than from "Hello, how are you?"
"I'm glad you asked" is not a good answer to friends; we don't want to take advantage of courteous questions. The situation is marginally uncomfortable, like first words to the bereaved. A given of Alz is that things are no better than yesterday; concern is sufficiently acquitted in the asking. "Level" is a good answer.
Do you really want to know--do I really want to tell you?--that Stella pulled the bedroom window shades off their brackets, some off their rollers? She must have been puzzled when the first one kept coming until it fell around her and she went on to the next window, sensing wrong, trying to get to a place where the process would end. She didn't call for help. I thought she acted strangely when she came from the bedroom hall, as if she had something to say but didn't have the words.
Stella had just been obliged to go off her first medication and was waiting for her liver to clean up before going into the clinical trial. Her slide seemed to be accelerating. She came into the sitting room and simply stood, looking in a way familiar to me when she was puzzled about what to do next. "Stell, is there something I can do for you?"
It wasn't the best way to ask; I had begun to learn that choosing is something an Alz doesn't do well, especially abstract choosing. A choice between a baked apple and a brownie on the table can be made; between only the words that represent them, choice is difficult but possible. To make an unprompted choice, however, in a world of possibilities--anything I can do for you-- without even multiple-choice answers to select from, maybe too much.
The open-ended question establishes only that we are in question-and-answer mode. It means Are you ready? Here comes the question: "Would you like a glass of orange juice?" She said, "I would like that."
She sat. I got the orange juice. While I was up I thought to see if anything in the bedroom had caused her to look so bemused when she came from the hall. The bedroom was a surf of window shades. They lay across beds and dressers and spilled to the floor.
My peers in the support group understood when I said that I then behaved like an idiot. I came back to her shouting, demanding to know what she thought she was doing, ordered her to leave the shades alone, never do it again. Gaining imperial stature from her bewilderment, her failure to reply, I went on to explain with bitten anger how window shades operate, what must be done if rollers don't catch and so on, knowing while I carried on that this was an idiotic, monstrous, primitive way to behave. Being obliged to choose already had her in irons; adding noise, speaking rapidly, showing anger massively confused her. She did not see what was expected of her and did not know where to hide from the challenge. Her face disintegrated from bewilderment to panic while I tried to lower the heat without giving up my rational right to be angry; until she cried, the first time in years I had known her to cry. I put my arms around her and we made it up.
I could tell that to the caregivers. They too had behaved like idiots and been ashamed. They knew not only from books that an Alz simply does not know how it happened, has lost the concept of one-thing-leads-to-another for hundreds of habitual acts. They too have shouted, employing the corrective power of noise because it is one of the ways we educate children to what is serious. Our lifelong habit of explaining; our belief that education happens as a result of telling and showing and shouting; the very concept of educating this other person, all this has to be purged from the mind and habits of the caregiver.
I can't very well tell the window shade anecdote to friends. They are her friends too and they may have an edge of feeling that I am demeaning her. I should not volunteer disclosures to which she is helpless to put her own coloration. It distances me, as if I am withdrawing some of my stake in her. Instead of protecting her inadequacies I am exposing them. It violates the privacy of a marriage.
What I cannot tell my friends whom I know well I can tell my Alz group, people I don't know outside the meeting room. If it is the first time these chance acquaintances have heard of window shades coming down, they know something like it: a lamp put in the trash, an empty milk carton in the oven, results disconnected from intentions.
They know choices should be limited to this or that--and maybe even that overloads the circuit, the fuse blows and no light goes on. They know dependency and docility, and the opposite: the irrational resistance and rage of the sentient human core trying to make itself known in the unfamiliar shadow.