A labor of necessity

Alzheimer’s is often ranked as the most feared disease, even though many other diseases kill much more quickly. But recently I’ve been wondering whether it is worse to be the person who takes care of the person who has the disease, particularly in Alzheimer’s later stages.

First, a word about “caregiver,” the formal term the Alzheimer’s Association uses to denote a spouse or other significant other. At this time, I prefer to describe Paula as my administrative assistant—the title she had in the Northeastern University political science department when we met in 1989. Early on, her unflappable manner became evident. One night I woke up around dawn with an allergy-related panic attack, briefly mistaking it for a heart attack. Big difference, of course. Paula calmly explained why my symptoms were not those of a heart attack. Then she went back to sleep.

Since my diagnosis, Paula’s perseverance and masterful organizational skills have been essential. I like to think that, for the most part, state and federal government does a reasonably good job of providing services. But I would be lost in a bureaucratic wilderness if I tried to navigate the Social Security system or Massachusetts’ innovative but flawed Health Connector. It is not hyperbole to say that Paula has been on the phone for an hour at a time searching for the answer for a relatively simple question.

The really hard work, for Paula, is likely still many years down the road. Barring something more abrupt killing me, such as getting run over on my bicycle, there is a good chance that I will eventually move into a realm in which I will need professional care, first at home, but maybe eventually in an institution. And this is the great unfairness of the disease. For middle-class families like ours, the cost of professional care could be staggering, based on how long I live. And, because I am otherwise in excellent health, it seems plausible that I could live for another decade, with my cognitive faculties slowly deteriorating.

As I wrote earlier this year (“End Game,” March 4), I’ve learned that some people with later-stage Alzheimer’s still enjoy simple pleasures, such as reviewing pictures of relatives, particularly ones who have passed away. This activity is called “scrapbooking,” and it appears to have genuine therapeutic value. I could imagine myself being content, at least for short periods, waxing nostalgic about various periods of my life—my years as a high school athlete, my vocational training on my college newspaper, my youthful decision to abandon journalism to focus on writing fiction, and my deep frustration in failing to find a publisher for my first novel.

And I can imagine boring Paula with my repetitive stories—repetitive because my mind will struggle to remember what I just said. Maybe I’ll say something insightful, but then quickly forget what it was. Talking in a sustained and coherent fashion will become a struggle. And, ultimately, the lights will go out, my cognitive reserve depleted, and I will sink into darkness. And Paula will likely feel relief (I certainly would), knowing that the long ordeal is over. But the drain on Paula’s resources could be immense.