When I’m asked the proverbial question, “What do you do for a living?” my response is always met with an awkward silence and then the inevitable, “Oh.” Writing poetry with people who are living with dementia is an unusual occupation.
I understand the confusion. To suggest I make a living writing poetry is weird enough. To do it with people most have assumed are “lost” perplexes even the most creative thinkers.
But what many don’t understand is that although Alzheimer’s a is terminal disease affecting over 5 million people in the U.S., the vast majority of those affected are living with the disease. Up until the end stages, people with dementia — not unlike people with cancer — can lead happy lives, experiencing a quality of life most of us can’t imagine possible for them. it’s up to us to adapt our thinking and behavior, to discover new ways to engage, creatively stimulate and empower those who deserve more than the status quo.
A Personal Quest
The idea to start my poetry facilitation business, Mind’s Eye Poetry™, in late 2013, could best be described as a midlife epiphany, one born of grief and a desire to change accepted practices in dementia care.
My reasons were personal. In 2008, my father was diagnosed with Alzheimer’s disease. He lived for three years with the disease, over which time he was in and out of memory care. In 2012, my mother was diagnosed with Alzheimer’s. She died just nine months later, after a stroke exacerbated her decline. She briefly lived in the same memory care center as had my father.
After my parents passed, I enrolled in, and completed, a graduate degree in creative writing with an emphasis in poetry. During my studies, I began to replay my interactions with my parents. Why had I not been more patient? Why didn’t I find ways to engage them creatively? Why was I determined to cling to who they were before Alzheimer’s, instead of embracing and loving them for who they were becoming? And perhaps more importantly, why had the so-called “experts” in their memory care center not done any better than me?
It’s not unusual for people who struggle with language to tap out the rhythm of the poem with their fingers.
Armed with passion, a healthy dose of naiveté and a fierce determination to change the culture of dementia care, I developed a poetry facilitation method. It stimulates memory and imagination in those who are living with dementia, people like Barbara. When I met her, her caregivers had told me she hadn’t spoken in weeks. Barbara was slumped over in her wheelchair, seemingly in her own world. Then, things changed — as I’ll explain shortly.
To date, I’ve worked with hundreds of people across the country who are living with Alzheimer’s and other dementia-related illnesses. I’ve facilitated over 800 poems using the ideas, words and phrases of the participants, people many assume no longer have the ability to engage in any form of interaction, much less a creative activity.
My one-hour sessions are theme-based, such as the ocean, springtime, or train travel. During the first part of my sessions, I show the group items that remind me of the theme, things that might trigger memory and imagination — like a seashell, a rose,or a train conductor’s hat. We examine the items, noting the way they look, feel and sound. While I sometimes work with individuals, most of my sessions are with groups in memory care. I work with people who’ve just been diagnosed, and with people like Barbara who are in the more advanced stages of the disease.
In the second part of my sessions, I recite several theme-related poems. We enjoy the rhythms of the poems. It’s not unusual for people who struggle with language to tap out the rhythm of the poem with their fingers.
At this point in the session, very few heads are down. Not only do I have the attention of the group, but I also see smiles, hear laughter and listen as fond memories and imagined stories are shared. On the day I met Barbara, she seemed to “wake up” when I read the poems about the ocean. She focused her eyes on me and began to mumble.
During the last 20 minutes of my sessions, I ask the group questions: When you think of the ocean, what comes to mind? How would you describe the sunset over the ocean? How does the wind feel when you are at the beach? If you could paint the ocean, what would it look like?
After each question, I write the participant’s ideas, words and phrases on paper, beginning to arrange them in poetic lines. Sometimes, I can barely keep up with the group because they are so enthusiastic and eager to participate. When I’ve written enough lines to form a poem, I stop and read their poem back to them. The looks of amazement are thrilling. And I hear them saying things like: “We did that!” “Hey, that’s my word!”
I typically facilitate three poems in a session, poems that are testament to the human desire (and capability) for creativity, even in the midst of disease.
My experience with Barbara when we began to write was profound, but not unusual. When I asked the group, “How does the wind feel when you are at the beach?” Barbara became animated. She struggled to get the words out, making several attempts that I could not understand. I assured her that she could take her time. I would wait.
A few seconds passed, then a smile washed over Barbara’s face, she looked off into the corner of the room as if remembering something beautiful, she gently touched her own cheek, and then clearly spoke these words: “The beach. The wind. It’s peppering my cheek.”
Art therapy isn’t new, but it is not being utilized to its full potential with dementia patients. There is an ever-increasing body of scientific evidence that suggests exposure to the arts — music, painting, woodworking, quilting, photography and yes, poetry — can increase a person’s feeling of self-worth, improve quality of life and perhaps most importantly, help maintain a person’s sense of dignity.
Arts for Life
People like Barbara, and the millions of others who are living with dementia, deserve the joy and satisfaction that comes from expressing themselves in a non-judgmental environment. They deserve life-affirming, dignified interaction. After all, we could one day be them.
The residents of Belmont Village Senior Living in Dallas, Texas, created the following poem in February 2015. © Mind’s Eye Poetry, 2015. All rights reserved.
The Sea’s Reflection
The quiet orange sail
whispers on the breeze.
A salty wind
peppers my gentle cheek.
Cotton candy clouds
melt into golden reflection.
Next Avenue is bringing you stories that are not only motivating and inspiring but are also changing lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. What story will you help make possible?