I had a conversation with a barista at a local café, which eventually came around to the topic of Alzheimer’s disease. I told him that I was living with, and caring for, my mom who has the disease. His reply was not untypical: “It must be really hard and painful.” I surprised myself with my reply.
Yes, losing parts of Mom has been painful. But I also wonder if those parts — playing competitive tennis, loving jazz — were just window dressing anyway. Were they really Mom? Who’s to say that what she’s getting pared down to as she makes her way through this disease isn’t really her at her most essential? The barista was taken aback.
The next day at my Alzheimer’s support group, and later in conversation with a friend, my thinking deepened: without Mom’s “window dressing” and without the history of how I have responded to it, I am more free to enter the moment with her. To Mom, the moment is all there is. There’s little or no past (not even five minutes ago), and certainly no future worth worrying about. Mom may not remember that a neighbour came by to offer some flowers this morning or that tonight her son is coming to wheel her around a local park. But when she’s in those moments, they are their own delicacies. She delights in them, and her perpetual invitation is: come and share this moment with me.
After my dad died a year and a half ago, my ability to share in those moments expanded considerably. Perhaps it is a blessing of Alzheimer’s that Mom’s grief didn’t seem heavy or enduring. She just seemed to start anew.
She soon began holding court on the front porch. Dog walkers started bringing their friendly, slobbering charges up for a visit; neighbours or friends from church would drop by. When the weather is disagreeable, she sits inside in her big easy chair at the window and becomes a one-person Neighbourhood Watch.
Tending to Mom is an opportunity to share these simple and rich moments, and to recognize the massive gift they offer. Getting under a blanket together and watching a storm, savouring the brilliance of a quiet summer afternoon on the veranda — caregiving has become my spiritual practice, and Mom my spiritual guru.
The moments aren’t always happy. One day, Mom was sobbing as she returned from her day program. I plied her with comfort (hugs, blankets, heat packs, tea) and listened to her. “Everything’s broken,” was how she responded to my question about what was wrong. “Why hadn’t anyone told me about Dad? When did he die?” Evidently, Mom had been following one of the men around, thinking it was Dad, and had been confused by his rebuffs.
Do I think that everyone who tends to someone with Alzheimer’s experiences the disease as I do? Absolutely not. If Mom was hitting me or was angry or confrontational, I might not be writing this, or writing about it this way.
Back to the barista — mention Alzheimer’s, and most of the time it’s with a heaviness, a sadness. No question, there is that experience. But, at least for me, that’s not all there is. Alzheimer’s has given Mom and me a treasury of moments. I’m grateful to continue to say yes to them.
Monica Plant is a writer and sculptor in Hamilton.