It’s just another bright, cold day, and you decide to put on an extra sweater before heading downstairs in the morning. After searching for the one that was lying on your bed and finding that you’re already wearing it, you slowly make your way out the door and come to an immediate halt at the top of the staircase. There’s a birthday sign, and a crowd of unfamiliar faces is looking at you with anticipation. One of them steps forward. “Happy birthday, Dad,” she says, “It’s so nice to see you.”
This is the story of a person with Alzheimer’s disease. In particular, it is a story about a man I knew during my time working at a senior assisted living center — just one of the many people I have known who has experienced Alzheimer’s disease or dementia during their later years. It is also the story of a significant portion of the world’s population, as the life expectancy of our increasingly medicine-oriented society grows at an astonishing pace. Yet despite rising mental health awareness, discussions of Alzheimer’s and dementia continue to focus purely on biology, thus propagating the social isolation of affected individuals.
There are thousands of academic papers on neural plaques, white matter hyperintensities and beta amyloid peptides, but how many articles have you read on how to interact with a person who has Alzheimer’s or on the significant flaws within available care systems? I would guess the answer to be very few, if any. As a result, our society treats this very personal disease with a shocking amount of impersonality, and the social aspects that influence the day-to-day lives of people facing these disabilities are largely neglected. The truth is that unless you are directly connected to someone affected by Alzheimer’s, you are most likely not aware of the disease’s subtle implications.
So, I would like to tell you a small story.
About six months into my time at the senior center, I had a routine of teaching watercolor classes on Sunday afternoons. Most residents in my classes would feel uncomfortable making their own drawings, so I would sketch pictures beforehand and have them paint them in. One day, I was working on my own painting while Susan, a resident who was a former English teacher and theater director, was filling in a sketch of a flower I had done for her. It is important to note that Susan was, at the time, experiencing the early stages of Alzheimer’s. When the manager walked in and remarked on my painting, Susan turned to me and haughtily contested, “Well, she’s painting from a photograph. Some of us have to work from scratch from our memories,” completely forgetting that she hadn’t drawn the picture herself.
My mom always said there would be times in our lives when if we didn’t laugh, we’d cry. This was one of them. It’s crushing to watch those you love become different people. In my time at the senior center, I heard amazing stories from a resident who fled the Soviet Union during the Cold War, one who married a childhood neighbor and high school sweetheart, one who built a log cabin with her husband and one who had been a professional opera singer. But I also saw these residents become lost on the way to their rooms, forget the color of leaves halfway through painting a flower and wait every Friday for a son to visit when he lived across the country in California and only visited on holidays. Humor can be a tough pill to swallow, because it seems wrong, insensitive, like you’re betraying an obligation to sorrow. But it’s also a necessary medicine that allows you to see the harsh realities of the future ahead and still maintain hope for that future.
And that’s really the point of all this. Becoming aware of what those realities are and learning how you can work towards what lies before all of us. Maybe you’ll go into research for neurodegenerative diseases. Maybe you’ll volunteer somewhere. Maybe when someone you know experiences Alzheimer’s, you’ll understand that the best thing is to try to interact normally, or hold his or her hand, or talk about what he or she wants to do that afternoon. The first step is simply awareness.
With this goal in mind, the Brown Alzheimer’s Activists are holding an information panel the evening of Thursday, April 11, as well as our annual Awareness Day on the Main Green Friday, April 12 from 11 a.m. to 3 p.m. to show support for a more socially accommodating environment. We would love to see you there.
Emily Toomey ’15 can be reached at emily_toomey@brown.edu.
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