The more I can learn about what it’s like to live with dementia, I hope I can offer better care, service, and understanding to the people God has brought into my life who are affected by these “unspoken” diseases. Vicki, Bruce, Mary, Freda and other people sharing about their lives and supporting others through their online comments are indescribable gifts from God.
It’s important – essential – for me to keep remembering, though, that I’m not just trying to learn about dementia, but want to understand what living with these diseases is like. I need to reflect, to try imagining to the extent I can what it’s like inside. That way I can be a better companion for your journey.
I’ve been reading two books suggested by Vicki to help learn about dementia, especially people’s experience of having it. The first is “Still Alice” by Lisa Genova. Although it’s a fictional novel, it’s written to describe real-life experiences. The second book is “Dancing with Dementia” by Christine Bryden, who was first diagnosed with Alzheimer’s Disease and later re-diagnosed with Frontotemporal Dementia. Both of these are powerful descriptions of people living with dementia.
I found another recent book written by a person with Parkinson’s and Lewy body dementia. It’s “Life in the Balance” by Thomas Graboys, MD. From reading the Foreward and Preface, I can tell it’s another powerful story from inside a person suffering with dementia. Although this will be a long post, I’d like to share the opening paragraphs with you. I’ve been reflecting on these words – his what and why – since last night:
Nothing is second nature to me anymore. No task is too simple, no activity so routine that I can do it without forethought. Is the glass right side up, or will I pour orange juice all over the counter again? When I leave the kitchen to walk to the bedroom, how will I get there? At the party tonight, where will the stairs be, and how will I navigate them? Will I be able to join the conversation? Or will I be standing in a corner, nearly catatonic?
For social gatherings, I have what I call my cassettes: a repertoire of conversational riffs on various subjects that will allow me to enter the converation and, with luck, appear to be a reasonable facsimile of the old Tom Graboys. Can I pull it off? Can I act the part and mask the reality of dementia? One of my goals in social situations is to have people go away saying, “You know, Tom seemed pretty good.” It allays the anxieties of friends and colleagues when you look and sound good, even if they cannot fathom the effort it took to muster such a performance.
Without my cassettes, entering a group conversation is like trying to get on the freeway traveling at twenty miles an hour while the traffic is rushing by at seventy. Slowness, an all-encompassing mental and physical slowness, has descended upon me. It is not going to lift.
Again, it’s time to reflect.