The other day I was asked what I was up to and launched into my unusual rhapsodic account about Mom and her art. The reaction was swift and angry. 1) Not everyone is like Mom and 2) Alzheimer’s is not something to be happy about.
On both counts—Yes, absolutely true.
I don’t mean to disrespect or deny the pain and loss that this disease can bring nor to imply that Alzheimer’s is a benign disease; but I am trying to introduce a new perspective—that there is more to this disease than pain and sorrow—that there is joy as well. When we accept that, we can vastly improve the quality of our lives together.
I used to project my fears on my father when he was in the last stages of both Alzheimer’s and Parkinson’s. In a wheelchair, unable to feed himself, diapers, dependence, confusion and delusion: everything I had been brought up to believe was a life not worth living. When Dad was asked if he wanted any extreme measures to prolong his life, all of us kids were confident that his answer would be no.
We were stunned when he said yes.
“You have to understand that life looks different from where I am.”
And this is the trap that is so easy to fall into. We think about how we would feel if we were in their shoes—how unhappy we would be But we aren’t in their shoes. When we stop imposing our perception of reality on them and instead join them in their time, we both benefit.
I see Mom’s life getting smaller and smaller—more and more content within the comfort of her small room filled with photos and pictures of her happy childhood, her life with Dad, the friendly faces of her dolls and stuffed animals, the pleasure in the moment…and I have to admit that she does not feel deprived—that’s me talking. I remind myself that this isn’t about me—it’s about her. And that is the ultimate respect.
There is a wonderful article on this subject The Alzheimer’s Reading Room: