As I look to the close of November which has been National Alzheimer’s Awareness month, I thought it would be helpful to allow someone who was diagnosed with has Alzheimer’s to give this devastating disease a voice. Richard Taylor, Ph.D., a psychologist from Houston, Texas, died in 2015 from cancer, but he also died with dementia. Early in the progression of his condition, he committed to writing about his experience so that others with a loved one who has dementia might gain some personal understanding of what dementia is like.
When he was seven years into his diagnosis, at age 65, Richard Taylor wrote Alzheimer’s from the Inside Out, and he followed this with a monthly newsletter on the subject. The following is an excerpt from an edition of his newsletter in 2011:
“I am Richard, an individual living with the symptoms of dementia, probably (maybe) of the Alzheimer’s type. This is my monthly newsletter for February, the month of my birth (Chicago, Illinois/Jackson Park Hospital 4:30 PM), at least that is what my Mom told me. This really isn’t a newsletter; it’s more like a report of what’s happened to me in the past 30 or so days. It is sort of like my book, Alzheimer’s From the Inside Out, except this newsletter is free and without charge (at least for now). It will soon be published in five languages – the newsletter that is. Through it, I have made and maintained friends with kindred spirits all over the world.
We all share more than a failing memory and slipping cognitive skills. We all want to know as much about what we “have” as possible. We all want to understand the research that is going on. We all to a greater or less degree are hoping for a cure – whatever the hell that means to each of us- within our lifetime, affordable to our families, with side effects that are significantly less than the symptoms of dementia with which we now live, and oh, by the way, could it reverse at least some of the more intrusive symptoms of this or that form of dementia.
I have spent a lot of time this month thinking and writing about this. I am not a researcher; I am not a physician or a pharmacist. I am just, Richard, a tall guy with a beard who is living with the more and more intrusive and more insoluble symptoms of dementia with which I have to cope if I want to live a purpose full, joy filled, love filled, and complete life. Most times this is much harder than I want it to be. It’s not fair, it’s not right, it just is. So I most times try to cheerfully embrace today, live in it as fully as I can by myself, and live in it more fully as a result of the enabling support of my family and those who love/like me.
Welcome to my inner and outer world more and more defined by dementia, probably (maybe) of the Alzheimer’s type.”
Charlotte Bishop is an Aging Life Care Advisor, Geriatric Care Manager and founder of Creative Care Management, certified professionals who are geriatric advocates, resources, counselors and friends to older adults and their families in metropolitan Chicago. She also is the co-author of How Do I Know You? A Caregiver’s Lifesaver for Dealing with Dementia.