Mere Oblivion: Rethinking Alzheimer’s

Avery Elizabeth Hurt

Last scene of all,

That ends this strange, eventful history,

Is second childishness and mere oblivion ….

As You Like It, Act 2, Scene 7

Over the past decade, in my work as a health reporter, I have written dozens of articles on Alzheimer’s disease. Stories that explain the neuropathology, stories that explore current treatments, stories that consider the possibilities for future treatments. In all of these pieces, I have dutifully attempted to follow the instructions of the assigning editors, which invariably were to keep it upbeat, dwell on the positive.

It was a lost cause. There is nothing upbeat about Alzheimer’s. There is no positive to dwell on.

And yet.

I am fascinated by the minds of people with Alzheimer’s. I find myself wanting to ask: “What is it like in there? Where are you?” For this disease is about so much more than memory loss, so much more than a loss of functionality in old age. Alzheimer’s is fundamentally a disease of consciousness and identity: To think about Alzheimer’s is to think about what it is to have them and what it is to lose them.

My father has Alzheimer’s, and I understand that my chances of getting the disease are marginally greater than if he did not. I do not need to tell you how much I do not want to get this disease. Yet I yearn to know how it feels to watch one’s consciousness slowly disintegrating, as if all the things that make you you and reality reality were slowly dissolving like salt in a glass of water. If death is the undiscovered country from whose bourn no traveler returns, then Alzheimer’s must be the route for which no traveler can leave a map.

One of the more notorious aspects of Alzheimer’s is the way it plays tricks with time. When you are serving breakfast to an Alzheimer’s patient on a sunny morning in May 2008, for her it may well be Christmas 1957. That afternoon, she may be wandering somewhere in the autumn of 1972. Like Billy Pilgrim, Alzheimer’s patients have come unstuck in time.

Often with Alzheimer’s, it seems that life is running backward.  The Alzheimer’s patient argues like a child about his lunch menu or insists that his caretakers have hidden his belongings. We notice the childishness of it, the stamped foot, the afternoon-long pout, the averted eyes when you try to explain that tomato is the only soup in the cupboard. It is, in many ways, a “second childhood.”

For those who grow old without Alzheimer’s, life proceeds along a gradient of maturity, ending with death just the other side of wisdom. These sages are our elders, our guides to the life still ahead for us. But for those who pass through second childhood on the way out, wisdom gained is lost again as they turn and go out the way they came. Yet perhaps there is an advantage to taking that particular path.

Consider the mind of a child. Young children live totally in the moment. They neither plan for nor worry about the future; they do not have regrets about the past. They are not so much unstuck in time as unaware of it, unburdened by it.

Perhaps we need to redefine wisdom. The old person following dementia’s odd pathways, revisiting childhood or traversing the years terribly out of order, may have as much to teach us as the elders holding court in their rockers, dispensing wisdom accrued through the years.

In her novel Passage, Connie Willis observes, “The soul not only doesn’t survive death, with Alzheimer’s, it doesn’t even survive life.” When I first read that, not long after my father’s diagnosis, I thought it was one of the most insightful things I had ever read. However, it now seems to me that exiting this world by means of Alzheimer’s is more like the soul turning inward, seeking itself.

This is not so comforting a thought as I may have made it sound. Yet I can still see a reason for turning inward. I no longer think of the demented as lost to us, rather as wise elders who have much to teach. But they, like the strong, are saying nothing.