“Creativity is evident in every one of us,” says Michelle Niedens, Director of Education, Programs and Public Policy, Alzheimer’s Association Heart of America Chapter. Every time I hear Michelle talk about the creative aspects of living with dementia, I am moved. I was so honored to have Michelle speak at my book launch for Connecting in the Land of Dementia. I treasured what she said about using creativity to live successfully with dementia and I asked if she would allow me to share her words of wisdom and caring with you. Here is her beautiful talk.
Using Creativity to Live Successfully with Dementia
by Michelle Niedens
It has been said that “we are helped by what is not, to use what is”. In Alzheimer’s disease, there are some things that are not. But welcoming this philosophy of using what is allows us to explore all the parts that are. As part of projects focusing on creativity at the Alzheimer’s Association, I have heard many people talk about how they are not creative. In one way or another, they find a way to let me know they believe they cannot create art, or stories or a collage or whatever forms of creation lay before them. Yet if we allow our minds to really think about the place of creativity in our lives, we could make a case that it is evident in every one of us. Whether it be building book shelves, writing poetry, the way we frame our words in conversation, the way we problem solve, the way we play with children, the way we garden and even the way we convince ourselves of things. Life is both complicated and simple and requires creativity to survive. It is almost as ever present as thought and breath.
In the poem, “the Necessary Art of Salvaging”, Barbara Lau writes;
In the dumbfounded middle of loss
We still manage to
Open mail
Feed the dog
Answer the phone.
The letter came the same day
My doctor announced
That the minnow heart inside me
Had stopped pulsing.
Back home I ate the lunch placed in front of me
And when the envelope fell through the slot
I opened it. The handwriting said
That a poem I wrote months ago
Would be released on a polished
White sheet of daylight.
I will never think of it as a fair exchange
But at least I know how to salvage,
How to search through the rubble
For that one unbroken teacup.
In the earlier stages of Alzheimer’s disease, creativity can serve to challenge the mind in new ways, what some might call brain exercise. It can allow the expression of the mixture of feelings in more comfortable ways or when there are no clear words to do so. Creativity can connect people and move our center from the relinquishing to the replacing.
In middle stages, there is something lost in Alzheimer’s disease that many of us only wish we could shut off. Somewhere in our frontal lobe, there is a part that tells us what we cannot do. It inhibits us. The part that tells us we would not like a food even before we try it. The part that tells us we wouldn’t be interested in a play or movie just because of some small variable. The part defines what we are willing to do or try or even to direct some interest in. For some people that inhibition is significant. It can be deeply embedded by early life expectations, culture, messages or even trauma. We can appreciate that there are times that inhibition is a good thing. But one only has to be around a person in the middle stage where such inhibition has been diminished to see the good side of that loss as well.
I remember one woman who would come to a poetry group with me every month. She lived in a long term care facility due to the significance of Alzheimer’s disease. She was an only child, parents long gone. She never married and never had children. I surmised from her history that perhaps she had always struggled with understanding and interrupting social cues and likely never had an insight into her emotions that allowed her to sort through the depression and anger that periodically flared. These tendencies did not disappear in Alzheimer’s disease, but what appeared was a person more open to others, less concrete in her interpretations and increasingly able to find ways to connect – always through creativity. On her last day attending the poetry group, she brought me a clay pin she had made. It was the shape of a heart – kind of. It was lop sided with dents where her fingers had tried to mold the clay, painted red with places missed, and wrapped in a kleenix. I still can picture her face as she handed it to me. It is one of the most treasured pieces of jewelry I possess.
Another poem, written by Lois Hjelmstad, perhaps better summarizes the significance of incorporating creativity in the experience of dementia.
Pipe Organ
I am not a large woman
And I am aging
I have been diminished by cancer, surgeries and chronic illness
But when I sit at the console
And my fingers touch the keys
My spirit soars.
Here – in the glorious sound –
My muted voice sings again
My faded beauty sparkles once more
My waning strength shakes the rafters.
What I am trying to say is this. There are all kinds of important ways that focusing on creativity adds to the lives of those with a dementia. Creativity brings laughter and fun, which we all need. Creativity brings connections to others. It provides a mechanism to share feelings and thoughts when other avenues may not be available or as clear. It can be the way that unfinished business is sorted and that we grow into someone we wanted to be. In other words, creativity can add meaning.
When I talk with individuals diagnosed with a dementia and their families, conversations include understanding what is lost and making decisions based on those that are anticipated. But what is most important is finding a way to successfully live each day. Finding those pieces that allow the muted voice to sing again. And let the waning strength shake the rafters. #
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
