The shaky hand, the labored breathing when she sleeps in her wheelchair, her shrinking body nourished mostly by vanilla ice cream: as we move into the eighth year that my mother’s brain is being ravaged by Alzheimer’s disease, none of it seems like a gift. And yet. Sometimes when she looks straight into my eyes now, no longer weighed down by judgment or disappointment or even yes, envy, the gaze is so piercing it cuts right through the haze of grief I walk around in. Fleeting as these moments are, I am able to see them as gifts. Although I can’t honestly refer to them even in their aggregate as a silver lining, I am willing to accept them as my “silver moments”.
I haven’t talked much about these brief connections with this version my mother publicly for fear of inviting responses running anywhere from insensitivity to idiocy. There is, understandably, very little space in anyone’s life for people on the front lines of Alzheimer’s disease to consider the possibility that this “long good bye,” as it was called by the author Kathryn Roberts in her book by the same title, might actually be a gift. Then I had the good fortune to be interviewed by Lori La Bey for her podcast “Alzheimer’s Speaks.” Her mother had Alzheimer’s from age of 55 to 85. That’s right, 30 years.
“I really think Alzheimer’s is a gift,” she said – out loud. While recording! In my “silver seconds” this thought had crossed my mind and I quickly dismissed it as irrational ticker-tape. But Lori is smart and thoughtful and has been in the Alzheimer’s game much longer than I have.
She then continued, explaining that the experience of caring for her mother taught her to slow down and be completely in the moment. And rather than arguing with her mother, she would embrace the imaginary, as long as it gave her mother peace. Turning the choice of not correcting or arguing with the person who is cognitively challenged into an act of generosity. I have learned this too. Not only in my experience with my mother, but with the hundreds of seniors I have worked with this year. I’ve been taking the Improv comedian’s “yes, and…” principle out of the theater and into people’s lives — not just to get laughs, but as an act of kindness.
I’m a born teacher, which is another way of saying that I love to correct people, so this was a lesson I sorely needed. What does it cost me to let a person in cognitive decline be right? The answer? Nothing.
For the record, I’m not talking about world leaders or policy makers or people in their right mind — or at least people we expect to be in their right mind. I’m talking about your mother. Or your father, sister, brother, grandparent, friend: the people we love so much it hurts. If we let them be, it can hurt less.
Hearing La Bey’s unorthodox take on the disease freed me a little. Because the truth is I’ve had exchanges with my mother in the last few years that do feel like a gift. They definitely never would have happened before. At their best it’s been like meeting her for the first time. This impish, fierce woman is now eager to smile and stick her hands in buttercream and lick her fingers. Something the woman I was raised by would have found “disgusting.” My mother made great use of the word “disgusting.” It was the perfect pejorative for everything from peanut butter smeared on the floor to a man cheating on his wife to a payment she was owed that never came. “Disgusting” no longer exists, which, in her case, leaves a lot more room for smiling.
After meeting with La Bey, I assumed she and I were the only grateful unicorns in the Alzheimer’s world. Then I ran into the mother of a friend of my son’s. I couldn’t remember her name (no comment) but the minute I saw her face, I recalled how she had called me with questions about her mother and Alzheimer’s a few years back.
“How is your Mom doing?” I asked her after we said our hellos.
“She passed two years ago,” she said, adjusting the glasses on her nose.
“I’m sorry,” I said.
“Thanks,” she touched her glasses again. “It was really an act of mercy, frankly,” she added. Our eyes locked in the unique way that I do now with people who have a visceral understanding of dementia.
“I get it,” I said.
“But you know my mother was very sweet in the end,” she added. “And so peaceful. She had been a very agitated, competitive woman in her life. She became a person happy to sit in a garden and take in a bird on a tree limb. It was quite beautiful.”
In that moment I had an experience of everything around us moving out of focus and the two of us standing there, with total clarity, acknowledging this very strange truth.
Dani Klein Modisett