My Year with Alzheimer's

SIX YEARS AGO I began gradually losing cognitive function: getting lost in familiar areas, losing mental arithmetic skills, getting confused, and losing memory. A year later a neurologist diagnosed me with “probable” Alzheimer’s disease.

As a physician, I knew what “probable” meant: He thought I had it but wouldn’t make a formal diagnosis until it got worse. I believed I had Alzheimer’s disease. One year later, however, my cognitive dysfunction, while still real even today, had improved slightly and, more important, had not been progressive. A new medical test demonstrated conclusively that, whatever it was, I didn’t have Alzheimer’s. So... for one year I had “Alzheimer’s”; then I didn’t.

I hesitate to write this for fear of downplaying the very real suffering of Alzheimer’s disease. For caregivers, it can be especially devastating. But my year of believing I had Alzheimer’s was among the best of my life. I became less aloof; my friends said I was more pleasant; I was emotionally and spiritually more open; I experienced God’s grace.

I chose not to keep my diagnosis to myself. I went slowly but informed an ever-widening circle. After I announced it to our small congregation, they overwhelmed me with their love and support. It had always been there, I’m sure, but now I experienced it.

To chronicle my losses, I began a blog, “Watching the Lights Go Out.” A small community developed around the blog, mostly caregivers but others with cognitive loss, too, some much more advanced than mine. I discovered a stunning hopefulness. A minority of people with Alzheimer’s certainly become paranoid, hostile, and generally unpleasant. But the majority, it seems, are like Janice Hicks’ mom: more receptive, perhaps, and living “squarely in the present.”

What can I say to you? For you with early disease, don’t hide it. Others will notice, anyway, and the embarrassed silence will be painful for you both. If you both know, you can talk about it, maybe even joke about it. You’re still you! Fear of their own cognitive future may drive some close friends away, but with others the relationship will evolve, perhaps deepen. And you can give up the embarrassment.

Recognize that it’s your caregivers who will suffer most; give them a chance to grieve. We talked with our adult children about inheritance. Discuss your end-of-life care. Write down and sign, even notarize, what you decide.

For caregivers, drop the heroic stoicism. This will be the hardest thing you’ve ever done. As care needs increase, get friends to help, perhaps give you a vacation. But as with Hicks and her mom, while some treasured parts of your relationship are lost, others will appear.

I remember a documentary from years ago chronicling a woman and her mother; they were joyfully dancing with each other. “My mother and I used to hate one another,” she said. “Now we’re best of friends.” There is much suffering with Alzheimer’s, but out of suffering and sadness, joy can sometimes emerge.