A few days after I returned from the museum conference in San Francisco, I attended a conference on dementia in St Paul. While the CAJM conference was small, a little over 100 rather hip attendees, the dementia conference had around 1300 people and a lot more grey hair. Many of us in our 60s were attending to learn more about how to support parents coping with Alzheimer's. Because I am doing a series of artwork on memory loss, I also wanted to see if I could learn some facts on which to build my work. Ideally each piece supports a relevant aspect of the disease.
One of my initial questions for exploration was what happens to identity as we lose memory. My sample of two, composed of my mother and late father, seemed to indicate that identity is persistent, remaining even as memory fades. My mother, the former first grade teacher, "cuts and pastes" each day. My father, the college professor, used to make his rounds to tell his stories at the university.
My observation of persistent identity was supported by our speakers. One shared several anecdotes. One was about a gentleman who each day would get up and then pull himself under a bed. What was he doing? Finally someone asked him and he reported that he was fixing the drive train. A former mechanic, he was reenacting a familiar role. They in turn entered his world suggesting he might want a pad because the floor was oily and offered him a blanket.
Another gentleman would poke his head into each room at a certain time of day and check on the residents. A former doctor, he was making his rounds. They asked if he would like a nurse to accompany him lest he start examinations and he happily agreed.
I especially appreciated a talk by John Zeisel, author of I'm Still Here and President of the I'm Still Here Foundation. Zeisel spoke about choosing the model of hope rather than despair for dealing with the disease. The public narrative is largely one of despair complete with social stigma. It is the perspective that it is all downhill from here and results in withdrawal from the world.
I remember when my father was losing memory, a former coworker suggested that his frequent presence in the world in his diminished state would tarnish his legacy. Like an aging beauty, it was presumably his time to retreat to preserve the perception. I understand where that comes from, but my father was never one to retreat. He would have responded with a none too polite expression. I mentally said it on his behalf.
Zeisel proposed that if we approach with hope we get curious. It occurs to me that my exploration through artwork accentuates my curiosity. When my mother speaks of feeling that she is in a wilderness, I begin to contemplate what that wilderness looks like. It has begun to bring me into a different place.
In a model fueled by hope we see the person for who they are, not her remaining skills, but her essence. We do things together, go places. Our loved one feels less lonely, as do we, for we forge a connection with the person who is there and appreciate their abilities.
He noted that a lot of programs are inspired by Montessori programming.
He spoke of how much of our brain is hard wired to appreciate nature, use landmarks, facial expressions, visual expression and respond to touch. An awareness of these facets can help us in creating meaning for our loved one.
There were two points that he mentioned that tied closely to my observations of my mother. The first was about identity that remains and can continue to be expressed in their environment.
The second observation is that even while they may not remember the particulars about an experience, they remember how it made them feel. My mother associates me with doing things from our prior travels. When I come in to visit she says she looks forward to the fact that we do things. No, she doesn't remember what we do, but that isn't the important part of the experience for her.
A program within I'm Still Here is ARTZ which focuses on arts programming, developing collaborative programs with artists and museums that engage those with Alzheimer's.
Sean Caulfield, director of ARTZ, spoke about their programming and the principles that underlie it. There are three parts of the creative process.
Imagination-freeing one's self from mental constraints
Action -perception, sensory reaction
Reflection - how can we do it better
The first two are unaffected, also consistent with my mother's creation of art. I have often envied her ability to suspend judgement and just create. It is a state artists often struggle to achieve. The ARTZ program works with both the visual arts and poetry and many of the artists create work that both surprises and delights.
I was especially touched by artwork Sean shared from a person who could no longer speak. It was of a tree with the word "mad" written by it. When asked why the tree was mad she wrote "No longer in the forest".
I thought of an elderly person isolated from the world, no longer able to communicate through speech. I'd be mad too. Artwork remains a vehicle for expression. If we listen carefully we might just learn something.