Maybe I have been watching too much news lately, but recently it seems that most discussions boil down to a far too simplistic view of any given issue. It is either right or wrong, good or bad, healthy or unhealthy — it seems we can never consider a deeper view that might consider a little of both. And so it was with the PBS documentary which aired last night Alzheimer’s: Every Minute Counts.
I watched the documentary with a good friend who is living his life fully in the face of Parkinson’s and a few new mild cognitive changes. As one of the early pioneers in the Alzheimer’s support world, I find I always learn from my mentor and friend so it was important for me to watch this with him. I also just like his company. Despite the 100’s of books I’ve consumed on the topic of dementia, I find I have learned nearly every useful thing I know from the people living with the disease. So, you can imagine my disappointment that this documentary didn’t share many, if any, lessons from people actually living with the disease. What a lost opportunity for these filmmakers! The “patients” featured in the documentary were silent for the most part. Their voices were recorded and used only to illustrate how confused they were or to show how shocked they were in the first moment of their own diagnosis.
I understand that the purpose of the documentary was to provide an important wake-up call regarding funding and the impending care crisis as our population ages and the number of caregivers shrinks. Important to note, this is a crisis for old age diseases of every kind — not just the cognitive ones. Unfortunately, people living with dementia are already coping with a huge stigma related to their diagnosis and unbalanced presentations like this feed that stigma. Alzheimer’s: Every Minute Counts was a singular representation — all bad, all tragic, and above all very costly to all of us—got it, point made. People diagnosed with Alzheimer’s will “take us down” and there is no part of that glass that could be half-full. Or is there?
I see a different side to the tragedy of the disease, and that is living with the disease. For instance, when I watched Sonja endure her doctor and her caring daughter talking about her decline and demise in front of her, I saw two things. The daughter’s tears, sadness, and fierce love that are a very important part of their story and I loved her instantly. I also see Sonja, a woman who was listening with life and understanding in her eyes, but who could no longer join in a conversation about herself. As a result, she was marginalized. Why can’t we focus the lens on both the tragedy and the quality of life that’s possible with the diagnosis?
The answer, I’m afraid, is that no one would listen. Would anyone listen if we didn’t use the dramatic “tragedy narrative?” Would the message have been as powerful if it featured hopeful people and their care partners who are living pretty good lives with the disease?
I cannot say it better than Michael Ellenbogen who lives a busy life with early onset dementia and is an effective advocate for people living with dementia. This is part of what he wrote this morning:
“It is sad that you cannot ask for money when you tell them that you are living life to the fullest with dementia. It takes the sad stories to actually get their attention and money. I learned that over time and it works on so many levels. I just had conversation with a congressman this past week and went thru all kind of statistics at him in the first half hour. It was not until I opened myself up and my wife that it made the difference. Listening to the horror I am dealing with got him to say count me in for all. That is when he started asking real questions and you could see it in his face that it hit home.”
Let’s face this challenge in another way. What if instead of characterizing this as a “tsunami” that will “take us down,” we begin to look at this as an opportunity to become a more enlightened society? I agree with my friend Dr. Bill Thomas that we need to consider there are lessons for us here. Rather than persons living with cognitive differences (see what I did there?) being cast in the light of a costly burden, let’s consider what they can teach us and contribute to our society. I know from my own experience that there are deep, rich lessons that come from those whose minds work differently. Lessons that have shaped my own mind along the way to be more relaxed, patient, open, and willing to go places it didn’t before.
For a great read on the subject and to hear the voices forgotten in this documentary, I suggest you read this blog as well as its resources.
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