Swallow Press has come out with a second edition of The Last of His Mind, the book I wrote about my father’s Alzheimer’s.
Doing some research for the book’s new introduction, I was stunned by something I learned about my grandmother. I explain, in the introduction:
In the years since my father died, little has changed about this disease. There is still no cure, and scant prevention. The one new dementia drug approved by the FDA in almost two decades, Aduhelm, has been widely doubted, and will not be prescribed by several hospital systems, including Cleveland Clinic and New York’s Mt. Sinai. But the march of the disease is steady. In a little over a decade, the number of Alzheimer’s patients in the U.S. has gone from five to six million.
Here’s the close to the new introduction:
I was good with my father, but terrible with my mother’s mother....
Recently I was trying to figure out when she died. My guess was about 1969, and I went online to see if that was right. To my dismay, I discovered that she lived on in that Connecticut nursing home until 1975, three years after my mother died—and not once, in all that time, did I ever go to see her. I don’t know if anyone did. Not my brother, he admits. Not my cousin. Perhaps we all thought it was useless, because she wouldn’t know who we were. But to imagine her in that home, old and confused and alone, now horrifies me. It’s true that I was out of the country for half those years, wrapped up with my marriage and divorce and young son. But Gran had been a warm and lovely presence when I was a child. Didn’t I even wonder how she was doing? How can I, and the rest of us, have abandoned Anna Taylor Lemont so completely? It torments me.
And across the U.S. today, how many Alzheimer’s patients live as my grandmother did, with rarely or never a visit from family and friends? It seems a travesty, and I’ve been part of it. It’s an indication, I think, of how difficult and painful this disease can be for all who are touched by it.
It was not a given at the start that I would leave Ohio and move in with my father on Cape Cod. I didn’t want to abandon my friends, the upkeep of the houses I’d built, the volleyball and tennis I played every week. But it was growing clear that my father was going to need me. Those were early days, when Dad was first forgetting the way home in his car, and buying Christmas cards for a non-existent great-granddaughter and great-great-granddaughter. As I imagined living with him around the clock, day after day, I wondered if the job would crush me. At one point I laid out my dilemma to a friend, Kathy Galt, who over many years had been steadfast with her own family. I told her I might be called on, but didn’t know if I could handle it. We talked it back and forth. She understood what I’d be giving up, and what I’d be taking on. She listened to me, but in her own life she’d already made plenty of decisions like this.
“When it comes to a choice,” she said, “do what you can’t do later.”