BY MARY BOUTSELIS
JULY 04, 2021 07:00 AM
My mother was a sturdy soul. She was of German descent, born and raised in a farming community in Michigan. Her motto was, “If anyone is still working, you don’t sit down.” When she came to visit us later in her life, she would say “Give me something to do.” It’s no surprise that once diagnosed with Alzheimer’s disease, she lived another 17 years — well past the mean of 10 years. As her primary caregiver, she and I had a long journey together.
At first, of course, it was heartbreaking and devastating to witness an intelligent, curious, energetic woman struggle to take care of her life and to become less and less able to engage in life as it unfolded. At times, I was angry and at times, consumed with sorrow. But from a spiritual perspective, it was the most impactful circumstance of my life. Her illness and progression went on and on, always changing and perpetually presenting a new opportunity to meet change and loss.
I am both Christian and Buddhist, perhaps an unusual combination. Buddhists frame life with a lens that we suffer because we live in a distorted sense of reality. The distortion or delusion in which we live is that things are fixed, permanent or won’t change. This is how we would like it to be so that we feel agency in creating comfortable circumstances and can then try to hold on to what we’ve created. We try to live on the “positive” side of the ledger, oriented toward wanting those things that make us happy and not wanting those things that bring pain. The release from suffering comes with wakening to this reality and learning that it is our mind which carves things up into “desirable” and “undesirable.”
This common sense approach seems like it should bring contentment. It’s not sustainable though, because it causes us to constantly live teetering on the edge of trying to hang on to circumstances that we like and to avoid circumstances we don’t. But, inevitably, our lives change. We become sick, our children succeed or suffer disappointments, we get or lose the job we want, or someone we love dies. Droughts and wildfires occur and we are confronted with unspeakable human violence. Yet, we try to hold on to things which will inevitably change or to escape something which we’d rather not face. The most central reality squarely faced in Buddhism is that, once born, we cannot escape old age, sickness and death. Most of us, however, spend a good bit of life pretending this isn’t so.
My mother’s illness afforded me a front-row seat to a long stretch of continuous loss and change. At first, I could only see the loss and mostly focused on the responsibility of caring for my mother. As time went on, however, I grew to appreciate the time that we shared, the humor that emerged from her disjointed reality, and the comfort she experienced in the repetition of stories, and the absolute newness of each moment. As the years passed, the range of experiences in which she could engage became more and more narrow.
We could no longer go for walks, so I pushed her in her wheelchair. She couldn’t appreciate what I read to her so we looked at old photographs. She couldn’t speak so I prayed the rosary with her as she followed along, her hands fingering the beads as she had for nine decades. As dementia relentlessly demonstrated the noble truth of impermanence, I had no choice but to let go.
As I let go, I was able to see the gift of what was in front of me.
My journey with my mother gave me the extended opportunity to wonder exactly what makes us who we think we are … we are so attached to our sense of our self as an individual, a fixed person who is separate from others. So, was my mother the bright, inquisitive, able-bodied woman or the woman who could not recognize me as her daughter and who could not feed herself? I watched as my mother slowly but definitively changed. Who was she? I could see that we are each a fluid part of something infinite (however one frames that infinite), but we are definitely not this discrete body which we struggle to preserve. There were many moments when I experienced God or, a Buddhist may say, our True Nature, when caring for my mother. Some of the most profound moments were when I was brushing her hair and felt God’s presence in that simple act. There was no illness, no one who was giving, no one who was receiving, simply that perfect moment.
While dementia is devastating, I bow with gratitude to the reality which it revealed.
Mary Boutselis is a Zen Buddhist practitioner who leads the local Six Rings Sangha meditation group. She loves gardening, bicycling and living part-time in Montana. This column is coordinated by www.learningtolivewhatsyourstory.org, whose mission is to create educational and conversational opportunities for meaningful intergenerational exchanges on loss, grief, growth and transformation.
This was first printed in the Centre Daily Times on July 4, 2021.