My involvement with the Alzheimer’s Association began 3 years ago, when I supported my sister in her fundraising efforts. Our grandmother had recently passed from the disease, and it was a meaningful way to honor her spirit. I know she would have been proud. Last year was the first time I was able to participate more physically in the walk. I found it a very moving experience, to make a Memory Garden with all our loved ones represented on nylon and plastic flowers, spinning in the breeze on a hillside. Each time I neared the garden, tears filled my eyes.
It is not an easy thing for me to get emotional about Alzheimer’s, as it is really a part of my everyday. To some degree you could say I am hardened to it a little bit. I have worked in nursing homes for almost ten years, and as an occupational therapist my role has been from caregiver to educator, problem solver to listener. Most of what I do for the individual is trying to retain a sense of normalcy and independence. Helping to find a room, remember how to feed oneself, or maintain comfort in a specialized wheelchair. For the families, I listen to their concerns, acknowledge their guilt of “putting Mom in a nursing home”, and help them identify ways for them to still connect with their loved ones. It is not always easy, especially when people’s behaviors and personalities are stolen by this disease. I went to a course a few years ago on Healthy Aging and the idea that struck me most strongly was when the MD said, to paraphrase, Other diseases, cardiac disease, diabetes, even cancer, affect the person’s routines, change his/her life immensely. But dementia, that changes the Person.
I try to recall this when I am the recipient of negative behaviors. I am hit, sworn at, or spit upon by people who had taught their children to behave nicely, who sang in the church choir. Families are appalled and embarrassed by their loved ones. And eventually they cannot even communicate, and therefore many stop visiting. And it is the truth of what Alzheimer’s can do to a person, and to a family. For this reason I walk. For my grandmother, for the wonderful person she was and for the fact she was taken away from us far too young– and many years before she physically passed. And for all my patients over the years, who have wandered, confused and scared. No one deserves a future like that.