My Mom Had Alzheimer’s. Now I Do Too, but I Learned From Her Not to Despair.

My mother spent the last three decades of her life afflicted by the loss of memory and control that comes with Alzheimer’s. I remember her panicking in the night, waking my father at 3 a.m. to search for her long-dead mother. He would often give in and drive her through the deserted streets of Los Angeles to lull her back to sleep.

When I was diagnosed with the same disease last fall, I would wake up early each morning and replay this disturbing scene. I visualized a pathetic decline that would make me and my family miserable.

But that is far from the full story. There are other lessons to learn from my mother’s experience. I know because I chronicled those lessons in this very newspaper 25 years ago, after my mother died. I know firsthand that a diagnosis of the disease doesn’t have to freeze our lives and herald the end of our stories; it can instead invite us to a new stage of life.

In August 1999, I wrote about how my mother was blessed by several graces among the losses. Her lifelong depression gradually faded in her last years as she began to live in Zen-like moments. She could be delighted afresh by the repeated appearance of the same white carnation. Her presence still delighted others. After my father died, when she had few words left, she could still hobble around her assisted-living home, tugging the apron strings of a favorite caretaker, who would lead her to a seat where she could “work” by folding napkins. She blew kisses to everyone who smiled at her. She was happy.

Through watching my mother and through volunteer work I’ve done writing minibiographies for people who are losing their memories, I’ve learned that many of the more than six million Americans with Alzheimer’s have a relatively tolerable experience. They shouldn’t be referred to as victims, sufferers or even necessarily as patients. They’re still individuals in pursuit of happiness.

Those numbers will skyrocket as my baby boom generation ages. But we don’t have to be scared into denial, as I’ve learned. With early detection, it’s possible to improve symptoms right now, become connected to fresh medical discoveries and help one’s family prepare for an uncertain future.

At age 74 and with my family history, I always knew that I had an elevated risk of Alzheimer’s, but in 2023 I was plagued by a constellation of seemingly unrelated difficulties. I was unsteady on my feet, limped, strained to hear, hunched over, choked on food, made wrong turns, forgot more and more things and was infuriated by my computer. Above all, my lifelong depression deepened. Friends asked my wife what was wrong with me.

I knew that all those problems could develop with normal aging and that, starting in our 60s, thoughts of decay and death could haunt our thoughts. But for me, I could see that seemingly small things were getting worse. A visit to my doctor resulted in a referral to a neurologist, who took a brain scan and gave me a cognitive pen-and-paper test. The diagnosis came in: I was in the early stages of Alzheimer’s.

Though I was not entirely shocked, I was shaken. When my mother was diagnosed in 1983, we were told that there wasn’t much to do about it. Since then, I’ve done a lot of reading and talked a lot with experts about ways to make things better. Still, things went dark when I heard the news of my own diagnosis. I began planning the playlist for my funeral.

Over the weeks following my visit to the neurologist, my wife periodically tried to get me to talk to her. “I have nothing to say,” I would bark, then stalk from the room. I thought I had nothing positive to say and negative thoughts would only increase the pain. My spouse just felt rejected.

But then things changed. As I moved forward with the neurologist’s practical suggestions and with my wife’s urging, I began to see improvements, even from simple actions. My mood has risen, thanks to stopping medication that had suppressed my dopamine levels. I got new glasses and boosted my hearing by removal of hardened ear wax. Vocal and swallowing exercises ended the choking, and physical therapy brought me back to the gym after a three-year Covid hiatus. Those actions didn’t address the disease directly, but my gait, balance, posture, strength and stamina are recovering, and I began to discover a cheerier outlook.

After six months of waiting, I got an appointment to visit the Johns Hopkins Memory and Alzheimer’s Treatment Center, where the doctors ordered a phalanx of tests in the hope of getting clarification about my prognosis. It may take another year, but I’m becoming more patient.

I’m talking to my wife again. I’ve plugged away to organize photos, write down family history and cull my memorabilia for the sake of our children. My wife and I had already moved out of our big old house, but now we’re looking into continuing-care retirement communities. It’s still my story, and more than my mother could, I’m determined to continue shaping it.

I know I’m fortunate, perhaps more than my mother in some ways. I have a resourceful spouse and children, great health insurance, top doctors and the benefit of decades of medical research. I understand that my future still could turn bitter, as it does for many people with Alzheimer’s who undergo personality changes as well as rapid physical and mental deterioration. My heart bleeds for them.

But I am also inspired by my mom’s capacity, in spite of her disease, to be thrilled by familiar things. In her assisted-living home, a Catholic priest once visited to hold a stripped-down prayer service for the old ladies. He punctuated simple prayers with a few venerable Protestant hymns. And even though my mother was no longer capable of stringing words together into sentences, she sang along with every word of songs she learned as a young girl in 1915 at a Congregational church in Massachusetts.

As activities and some aspects of my previous life inevitably fade away, I hope to be similarly graced by a deepening of other capacities. Now if anyone were to offer me the same deal as my mother’s — to live to 89 with receding memories but to drift away in sleep still enjoying life and bringing joy to others — I’d grab it in a second.

Stephen Gettinger is a retired journalist who covered national politics in Washington, D.C., for four decades.

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