Alzheimer’s Caregiving

Mother and Three Daughters‘She was such a horrible mother,’ my younger daughter remarked during an early spring lunch the other day. ‘Why do you do it, Mom?’

The question nags for an answer, as much in the unnatural disconnection of my daughter from her grandmother as in the protective attention of my friends. I should seize such moments to explain myself, my mother, and this ironic turn of fate. But I don’t. Instead, I bow to a stronger force in me.

‘Anticipatory grief’ they call it. It is an honorable label for what I feel, recently provided by the speaker at the monthly Alzheimer’s Foundation support group. A kind-faced man with a soothing voice I could have listened to for hours explained to the group of newly converted caretakers. From beginning to end, he said, this long goodbye can last more than a decade. And the highest risk is not to the patient, but to the family. Stress. Exhaustion. Lowered immunity. Compassion fatigue. Pendulating emotions. A tendency to isolate. Each stage, as bad as it is, will leave us wishing for its return as the disease moves on.

I sat in the circle of caretakers that evening − aging spouses, siblings, adult children − all wearing the disease’s handiwork in our still-ready-for-battle shoulders, permanently creased brows, half-closed eyes, crossed arms and legs. Each took a turn voicing a variation of a loved one’s deterioration. One man nearly whispered when he told about his kind and pretty wife of forty-two years who had become a total stranger, a frightening, abusive woman whose condition had defeated him more powerfully than any other event in his life. When it was my turn to share I couldn’t lift my eyes from an arbitrary spot on the carpet near my feet, afraid to look away from it and lose the one spec in the room I could claim for myself. All I wanted to say was Private − Keep Out.

It surprised me then and still today, this now chronic unwillingness to explain myself. I cannot find the language, or the desire or motivation, to include anyone in this. Not fellow caregivers, not my friends, nor my daughters. Unlike other hard times in my life, this thing with my mother doesn’t move me toward anyone, even the most tenderly offered refuge. It is a barren territory I inhabit these days, a place I did not enter voluntarily, and despite their good intentions, no visitors are welcome.

I look into my daughter’s eyes and feel inadequate. I want words. There should be a book, I think, one I could hand her. I’ve always found solace in books—when I nursed my children alone, when I was going through the divorce, when I didn’t know how to manage money. A book would help me explain myself now, make my daughter and my friends understand. But I can’t think of one. I’ve seen the dozens on bookstore shelves explaining the disease, each with descriptions of how the amyloid plaques and tangles are devouring my mother’s brain. I’ve read many of them. I know how Alzheimer’s is irreversibly erasing her references to everything she is and was. I’ve considered the lists of the dos and don’ts of caretaking, and their reminders to make time for myself first. I’ve poured through tender stories of adult children and spouses who stand close by, helplessly, and witness the disintegration of a loved one.

But my story isn’t tender. I am not losing a loving mother. I don’t feel helpless. I am responding to something even more primitive than loss. I am greedy for what everyone else I know rightly takes for granted. The elixir I have spent my life searching for. I am awkward at it, traveling without a map and within earshot of a ticking clock. No matter. At last, for whatever time is left, my mother is mine to own.

–from Tesoro, Chapter 3