Dementia’s Toll
CK and friend, December, 2022
It happened so fast: the downhill mental slide; the loss of cognition. The last time we met, we celebrated the winter solstice in my backyard. It was just the two of us. I wanted to give her my full attention because her speech and memory were deteriorating. She walked the candlelit labyrinth unaided, then sat bundled up in her long coat as I took my turn. Suddenly I heard, “My friend Cynthia…she loves me.” It was halting and third person, but it was a beautiful declaration; an appreciation for the time and effort I’d made to pick her up, feed her and bring her to my home.
In December, my friend could still communicate, albeit with difficulty. As an interfaith minister, she presided over the signing of my son and his wife’s marriage license at a nearby tavern. I desperately wanted her to do it. It was a final vote of confidence; a recognition of her life’s work. Her text messages were garbled the week before the ceremony. I engaged a back-up officiant…just in case. At the crucial moment, around the table at the tavern, we handed her the papers and held our breath as she carefully, with supreme concentration, answered the questions on the documents and slowly scrawled her name on the signature line. The words were mostly legible, the sentences mostly complete. The paperwork was approved and delivered to the married couple a few weeks later. I felt relief, on so many levels.
These days, I call and leave messages. When, and if, she calls back, her words are confused, frustrated attempts to convey the logistics of where she’s living and how she’s doing. I’ve tried buzzing her apartment. I’ve called her former employer to ask her whereabouts, but confidentiality prevents the release of this kind of information. I realize, starkly, I may never see her again. We have no mutual friends. I do not know her family. How could it come to this? Should I have anticipated her decline, talked to her about it and asked how we might sustain our friendship once she was no longer fit to reach out?
Caring for people with dementia is a tricky tightrope. We balance high in the air, wobbling precariously between love and resentment, duty and exhaustion. In truth, maybe I didn’t want to see the severity of her condition and the rapidity of her decline. It takes time, energy and incredible emotional strength to care for people with memory loss. It compels us to imagine our own demise. Will we meet the same fate? Will we be taken care of? By whom, and at what cost, physically, emotionally and financially?
In this episode of CK Unmuted, my friend and neighbor, Ramona Salotti, talks about caring for her husband, who is in the early stages of dementia. Listen to the podcast with Mona and check out the resources she recommends below. There are amazing organizations, lead by amazing people who dedicate themselves to helping others on this journey. Following are Ramona’s recommendations for resources and organizations that help the care partners:
Books
Basting, Anne PhD. Creative Care: A Revolutionary Approach to Dementia and Elder Care. New York, HarperCollins, 2020.
Dunlop, John. Finding Grace in the Face Of Dementia. Wheaten, IL, Crossway, 2017.
Genova, Lisa. Still Alice. New York, Pocket Books, 2007.
Genova, Lisa. Remember: The Science of Memory and the Art of Forgetting. New York, Harmony Books, 2021.
O’Brien, Greg. On Pluto: Inside the Mind of Alzheimer’s. Expanded Edition. Brewster, MA, Codfish Press, 2018.
Richmond, Lewis. Aging as a Spiritual Practice: A Contemplative Guide to Growing Older and Wiser. New York, Avery, 2013.
Non-Profit Organizations
ARTZ Philadelphia. Enhancing quality of life for persons with dementia and their care partners through arts and culture. www.artzphilly.org
Alzheimer’s Association. The leading voluntary health organization in Alzheimer’s care, support and research. www.alz.org
