Of course, I set the situation up, so I do not really have a choice. I recorded an interview with two wonderful people, Kat Hartley and Nancy Nelson. One is Dangle and the other is Dot, and they are extraordinary people working to make the world more friendly for people like me.
In 2018, about five years ago, I was diagnosed with “Mild Cognitive Impairment.” Last year, after a series of brain scans it was determined that the source of my impairment is Alzheimer’s Disease. So today, depending on which doctor I talk to, I have Early-Stage Alzheimer’s, Alzheimer’s Disease with Mild Cognitive Impairment, or simply Mild Cognitive Impairment. Why the confusion? Well, a definitive diagnosis of Alzheimer’s isn’t possible until an autopsy is performed.
Susan’s advanced breast cancer diagnosis and how we dealt with that era of our lives have been great training for both of us. The shoe is just on a different foot. The experience and time I spent on the board of the World Institute of Disability, as a “non-disabled person” at that time, also gifted me with a vision of how to be in the world with what I will now face. Then, there is Lynn Fielder, my friend and now role model who has taught me how to embrace what I am, whatever that is, as who I am! All those stories are in the book, The Actual Dance, Love’s Ultimate Journey through Breast Cancer.
Now, I meet these inspiring ladies, Dangle and Dot – and they are teaching me how to integrate all that is happening to me into the new reality of a life-altering diagnosis – dementia. They are activists, among other things, in a movement called “Dementia Friendly.”
What a scary word -- dementia. I am reminded of my introduction to the disability movement about 40 years ago when ideas of reshaping the world to accommodate and work with people with significant disabilities were viewed with great skepticism. “What, change all the curbs in on streets in America for what? Who’s going to pay those bills? And besides, look around, there are no people in wheelchairs around.” I heard those words, and then, as the physical world was changed, we saw people in wheelchairs, walkers, and even baby strollers everywhere!
Dementia Friendly is like that early disability movement, and it has already helped change my life. It started in Britain and is now available to be implemented in every city in America. The goal is to bring full awareness and accommodation to people with dementia as has been done with other disabilities. The stereotype of mental illness and dementia can manifest similarly. The stereotype is that people with this disability are broken and cannot be fixed. They cannot be accommodated. People “like that” -- like me now -- must be isolated, cared for in nursing homes, or the like. It just isn’t true.
I am still exploring what it means for me. My goal is to keep performing The Actual Dance, talking about the journey with Susan, my life partner, and one day soon begin writing more about this phase of the journey. It is part of who I am.
Now I invite you to enjoy our conversation!