A Unique Look at the NCCA Creative Caregiving Guide©

To work as a lead artist on the National Center for Creative Aging (NCCA), Creative Caregiving Guide© project, for the past three years, has been an honor.

To inspire you try the guide, I want to take an unusual path and look at the guide, through Rebecca Solnit’s writing on her caregiving experience. In the opening chapter of her book, “The Faraway Nearby,” she introduces her mother, who is the first stages of memory loss. Solnit’s writing on dementia through the lens of her relationship with a loved one is among the best I have read.

Describing early morning walks, to help curb her mother’s wandering, she writes,  “When the rest of my conversations with her were chaotic or perilous, I talk to her mostly about the colors of the houses and about irises, honey-suckle, nasturtiums, passionflowers, sunflowers, morning glories, and the other plants we passed on those walks.” You feel the daughter and mother at ease in warm fragrance of the spring air, ablaze with color.

In that passage Solnit touches on two things at the core the NCCA Creative Caregiving Guide© and using arts with a person living with memory loss:

1.     She stays in the moment, by focusing the discussion and attention on what is in front of her and her mother.
2.     She steps outside of their normal routine to spend time together on the walk.

A main focus of the NCCA Creative Caregiving Guide© is being in the moment and carving out a little time away from the things we have to do to get through each day.

As the founder and Executive Director of the Alzheimer’s Poetry Project, I was thrilled when I read: “As I was writing this I went to see my mother, and a little way into trying to be with her in the era past when she would murmur more than an occasional word and I would only rarely understand it, I remembered that I had a copy of Rilke’s Dunino Elegies with me and read three of them to her. In one of them were the words,

‘what we’re now striving for was once
nearer and truer and attached to us
with infinite tenderness. Here all is distance
There it was breath…’

It was a good way to keep talking and I listened too, and the familiar lines became more fiercely elegiac, more stern and wild spoken aloud.”

Solnit gets to the benefits of creative aging, when she writes that using poetry is a good way to keep talking and how she also listened deeply to the words.

The arts and the lessons in the NCCA Creative Caregiving Guide© may serve us, as communication tools and as ways to be together, for us to see and listen deeply to each other.

Like many people touched by caregiving, Solnit experiences a profound shift, as she goes through this experience. She finds her relationship with her mother in some ways improves and even with all the negative of dementia, there can be positive.

Capturing the essence of caregiving she writes, “Another thing to come to terms with was that there was no preventing or changing the course of events, the disease was a road she was going down no matter what. All we could do was help her travel it as gracefully as possible and locate what pleasures and comforts were available along the way.”

We designed the NCCA Creative Caregiving Guide© to be a map to those pleasures and comforts, laughs and smiles, dance, song stories.

The creative aging movement is grounded in the concept of person-centered care, that Solnit finds her way to as well, “I learned a lot in witnessing her travel steadily into the unknowns and unknowables and in contemplating a self beyond possession of skills and facts, and the value of the self beyond functionality.”

Finding that self, through the spark of being creative together, can be joyful.

"Taking care of the elderly," Solnit writes, "comes without the vast literature of advice and encouragement that accompanies other kinds of commitment, notably romantic love and childbearing."

We all need advice and encouragement, especially when navigating memory loss. I am proud to a part of the team that developed the NCCA Creative Caregiving Guide© and hope it contributes to the culture of caregiving, along with the kindred spirit of “The Faraway Nearby.”