Alzheimer's disease · Caregiver · Caregiving · Disclosure · Emerson · Grief

Assisted living, part 2 / September 13, 2006

Next Tuesday a nurse from the assisted living home will evaluate my mother here at the house. I spoke to her on the phone today to set the time. She then asked me what my mother knows about the arrangements.

Nothing. We have brought it up as a possibility with her, but I have still not sat down with her to say, “Mom, we have you on the waiting list for assisted living.”

The nurse reacted very kindly to my prevarication. She suggested that we tell my mother that we are looking to find ways to improve her health and life. She was understanding enough not to say what she must have been thinking–”What on earth are you waiting for?”–and I appreciated that.

The truth is that this is by far and away the hardest thing I have done in my life. Dealing with my father’s death was not nearly as awful as this. I’ve heard heartrending stories about nursing homes and assisted living, and I’ve heard extremely heartening stories about them, and I am still in this harrowing place. I still want her to give me her blessing, to tell me it’s okay, that she would rather move than continue on this way. But she can’t, and maybe that’s because I’ve kept so much from her, and I’m not sure what I did was right.

I think the hardest part is keeping it from my mother. Watching her deal with each uneven day and knowing that she can’t make the decision. Trying to come up with some half-truth that might sugar-coat what I am going to do. I know that, to a certain degree, I am not totally responsible for the decision. There are realities that are finally becoming visible through my rose-colored glasses. My mother cannot live alone–no argument there–and should not be left alone at all. I realize this when I tell her, for example, to turn off the ceiling fan and then realize that she doesn’t know what I mean by “ceiling fan.” Or when she says things like, “I don’t know my face.” So sitting down with her to discuss assisted living might open a Pandora’s Box of mis-associations and fears.

But there’s still a Mom in there and if my father were around, he’d take care of her… Would he? How do you take care of someone when everything that is shared disappears? The past, the language, the habits, the trust? She can only hang on to the present, even if it seems miserable, because anything else is alien. What does “care” mean, under those conditions?

So I must decide for both her and me. And I want to be sure it isn’t my exhaustion making the decision. I guess I’m in the process of grieving, first, the loss of an expectation: that my mother, like everyone else, is entitled to determine the quality of her life–where she will live, what she will do. That grief engenders another grief–for the loss of my idea of my mother, of the person who is related to me in a way no one else will ever be. The first eyes I looked into, the first embrace I felt. I still see glimpses of her and this is the person I feel I am betraying, mostly by my silence.

I know she needs more care than I can give her, and this need will only increase with time. I know that better with each week. But the intellectual realization and the emotional realization are not aligned, and that’s where the mourning is.

From Emerson’s essay titled “Fate”:

Let us build altars to the Beautiful Necessity, which secures that all is made of one piece; that plaintiff and defendant, friend and enemy, animal and planet, food and eater, are of one kind. In astronomy, is vast space, but no foreign system; in geology, vast time, but the same laws as to-day. Why should we be afraid of Nature, which is no other than “philosophy and theology embodied”? Why should we fear to be crushed by savage elements, we who are made up of the same elements? Let us build to the Beautiful Necessity, which makes man brave in believing that he cannot shun a danger that is appointed, nor incur one that is not; to the Necessity which rudely or softly educates him to the perception that there are no contingencies; that Law rules throughout existence, a Law which is not intelligent but intelligence, — not personal nor impersonal, — it disdains words and passes understanding; it dissolves persons; it vivifies nature; yet solicits the pure in heart to draw on all its omnipotence.

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