Friends and acquaintances often send me articles or recommend documentaries about Alzheimer’s disease and dementia, knowing about my interest in aging and the prevalence of Alzheimer’s in my family. I usually don’t get through the articles and avoid recommended films entirely.
A chance reading of a letter to The Washington Post written by the caregiver and wife of a man with early-onset Alzheimer’s gave me a clue why I can’t face these well-intentioned suggestions. As a caregiver, she writes, “I’m tired of reading articles that slyly demonize dementia.” She was writing in response to a July 5, 2015, article on the front page of The Post with the headline: “Alzheimer’s spurs the fearful to change their lives to delay it.” She continues:
“Alzheimer’s is not what my family would have chosen, and, yes, we wish there were treatments for it instead of healthy lifestyle habits to possibly prevent it. Escaping dementia doesn’t mean we escape the 100 percent terminal condition of being human, and words count. This article included fear-drenched language: ‘robs,’ ‘dreaded,’ ‘erosions,’ nightmare,’ ‘burden’ and ‘in some ways worse [than death].’ This condition is already challenging. Rather than demonizing dementia, let’s put our energy into building dementia-friendly communities and accepting our mortality with courage, grace and, yes, humor.”
I watched my mother die from Alzheimer’s, and then became the caregiver for my father, who was diagnosed with the disease a few years later. They both had had healthy lifestyles, were engaged in the world, read a great deal, and were socially active in their church and community. I’m tired of people telling me I can avoid Alzheimer’s if I eat right, exercise regularly, and stay mentally active. Having Alzheimer’s is not a person’s fault for not taking care of his or her mind and body.
As I watched the disease progress in my mother, at first I was angry about God’s abandonment of this faithful person. How could God allow her to be stripped of her humanity through the loss of memory and reason? I used all the words and phrases the letter writer labeled as fear mongering and demonizing and added a few of my own.
My language and my feelings have shifted since that time. The first person who helped me to confront my fears and anger was Bishop Mark Dyer, who was on the faculty at Virginia Theological Seminary while my mother was still alive. Over lunch one day I expressed my frustration and disappointment with God and my loss of no longer having a mother to confide in or talk to. His response startled me.
“She is your mother,” he said sternly. “Nothing will ever change that.” He went on to say that she still had wisdom to impart and that it was my responsibility to seek it. I realize now that he gave her back the humanity she had never actually lost, but that I had stripped from her. My thoughts and words had never had the power to change her directly, but they had diminished me and taken away part of my own humanity.
Language does make a difference. Being aware of the words we use to describe others, especially those different from us, can help us recognize our own fears and prejudices. Changing words we use to think about and act toward others has the power to add light or to leave us in darkness.
I may start looking at the articles about Alzheimer’s and dementia that others pass along to me, but if I read words that “slyly demonize dementia,” I’ll put them down.
Dorothy Linthicum (@dslinthicum) is an instructor at Virginia Theological Seminary and program coordinator in the Center for the Ministry of Teaching.