Over the last year, we’ve had the honor of being part of a growing movement of care partners, people living with dementia, health and helping professionals, artists, activists and advocates across the U.S. and globally who are bringing new, radically humanizing visions of care and policy to the dementia conversation. While we hope our The Joy of Dementia (You Gotta Be Kidding!) conversations are contributing to the success of this movement, it is about the lessons we’ve learned from others that we are writing. So it is our pleasure to introduce you to just two of the many “teachers” who inspire us.
Diagnosed with early onset dementia at age 60, Wally Cox lives in Northern California with his wife Pat. Wally recently shared a wonderful talk he gave for the Alzheimer’s Association in CA in which he shares his response to the doctor telling him and Pat to “go home and get his affairs in order.”
It was as if I was on a merry-go-round, standing on the outside edge as it was spinning resolutely, staring at the center pole where I saw the ‘Big Ds’ – dementia, despair, depression, disappointment and death…I was whirling in circles, becoming ill from worry, stress and the concerns I had. In the meantime, as I focused on the center of the merry-go-round and surrounding me were all the good things I would have seen if had just turned around and looked outside instead of in…I needed to look outward from the merry-go-round to see another path – the rest of my world, filled with faith, family, friends, music, love, adventure, art. I needed to recognize that I am more than my diagnosis, more than my illness…This is the path I have chosen.
He then asks the audience, “Are you staring inward at what cannot be controlled or outward at what is possible?” What a wonderful question, and one that, in our opinion, doesn’t get asked nearly enough – about dementia or almost everything else in life.
Susanna Howard is the brilliantly creative founder of Living Words, a UK-based “arts & literature charity, working with people experiencing a dementia, isolated individuals & communities.” This past November, Susanna joined Mary, Peter Whitehouse, Richard Coaten and Lois Holzman for a November webinar, “Forget What You Know About Dementia” (transcript available here).
Fortunately, she also introduced us to The Things Between Us, an incredibly moving anthology Living Words published of words and poems of people living in the late stages of dementia. Here are a couple of our favorites.
I don’t know what I think
I don’t know if it matters
I don’t think it does
I don’t think
I don’t know that I think
That’s the trouble
Live a Life
Nobody here asks what you did
In your life
It seems they seem to think
We were put on earth with broken legs
And have come for sympathy
And they say ‘Yes, yes’
Don’t really want to know
It sounds silly
But it’s quite true
We’ve all lived a life.
Let’s face it – if these words were heard in “real life” from someone with advanced dementia, they would likely be ignored or dismissed as the mutterings of someone “not all there”. But experienced as poetry, the impact is very different. We allow ourselves to be touched and inspired and embrace the humanity of the “poet.” Freed from the constraints of truth and knowing and assumptions, we have an opportunity to create more intimate relationships with those we love, whatever their life condition.
All of which has helped us appreciate that Joy of Dementia is also using a different lens – the lens of development and growth. As seen through this lens, human beings no longer individuated and isolated individuals but relational beings and part of something larger than. Indeed, it is the relationality and the collaborative nature of what humans do that allows us to grow with, rather than fear, the unknown. In our work, we emphasize the ensemble activity of creating the performance.
Of course, most people don’t view themselves as “performers” so we help them along. A fun way we do this is by directing the groups with whom we work on their “audience performance.” We ask them to perform as bored, as excited, as outraged, etc. – all of which they do remarkably well! Not only do they experience themselves as performers (in the most ordinary sense of that word), they begin to see that, as performers-in-life, they can continuously decide how to respond – in the workshop and in life.
Will looking “outside instead of in,” embracing the poetics of dementia or using new “glasses” ensure a “happy ending”? No. But having the capacity to see and create new possibilities in even the most difficult of life situation can make a huge difference in the quality of our lives. And this, for us, in the challenge – and joy – of dementia and life.
Danuta Lipinska says
Thank you for this refreshing and affirming perspective. Susanna and Living Words are the Pioneers of supporting new ways of looking at and feeling about living with cognitive change and the dementias. Challenging our neuro-normative bias and offering options that can light us up on the inside and create empathic community on the outside, we miss these opportunities for growth and surprise at our peril.