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.