Art as alchemy: How creative expression can transform your care partnership

When you paint, repot basil, play guitar, or craft poems, your focus settles.

Artistic expression allows practitioners to be deeply present with what is here, now. 

That kind of mindfulness is a balm for Care Partners who find their attention constantly elsewhere and everywhere — doctors appointments booked and attended, dinners planned and prepared. 

For those supporting someone living with dementia, the arts can prove especially beneficial. Creative pursuits can facilitate a deeper connection between a Care Partner and her person, and they allow her to process a complicated emotional landscape, too.  

“I find some alchemy in the pain and the grief to turn it into something more beautiful than it is, or something that’s more tangible than it is,” said Beth Copeland, whose poetry collection, Blue Honey, documents her father’s Alzheimer’s and her mother’s short term memory loss. “It helps when I’m feeling sad or burdened, it helps me to be able to put it into words.” 

One of the poems she wrote during this time, “Falling Lessons: Erasure One” inspired a short film by the same name. 

Her father had neuropathy and, as his Alzheimer’s progressed, he would often rise without his walker, yielding frequent falls. Her initial poem that explored these incidents was long, but she kept culling the most essential lines.

“I became interested in the idea of erasure, because I felt that the process of erasure is a reflection of what happens to people when they have memory loss,” she told PBS. “I found out as I was doing it that the distillation process made the poems stronger.” 

Falling Lessons: Erasure One

My father steps into a field of lost
sensation, sunflowers, a yellow star. 

He lives in the garden without maps. 

My father dreams through
what he feels and believes is real.

He loses his memory, his flesh,
his child with seawater eyes.

He forgets the fog. 

We forgot to speak and snow was falling
on blue mountains, a vein 

of childhood, blood, and sorrow.

I walk into this memory when my thoughts
start falling into a funnel, when I’m failing

to love, falling into a freeze-frame
where time fades like the flurry 

of furious wings. I fall. 

The erasure left Copeland with the poem’s core, its essence. In this way, her process mirrored her subject matter. 

“It made me think about how my father was losing his memory but there was a part of him that was still there,” she said. 

Cincinnati’s former Poet Laureate, Pauletta Hansel, experienced a similar feeling as she tended her mother, who was diagnosed with vascular dementia nearly 10 years ago. 

“Things really get stripped down to their essences in a way,” she said. “It becomes an experience of touch and love and presence.” 

The creative process allows the Care Partner to approach each situation with a gentle curiosity. 

“If you’re looking at something closely enough to put it on the canvas with paint, or whatever your medium is, then you’re really paying attention to that thing,” said Hansel, who now hosts writing workshops for caregivers. 

Her own writing practice served as an anchor that yoked her more closely to her mother – a process that yielded the poetry collection Palindrome. 

“It’s hard not to push the feelings away and to not back away from the intensity of the experience,” Hansel said. “Writing became a way to stay present to my mother and to stay involved with my own feelings. I didn’t set out to write a book of poems about my mother and her experience with dementia, and my experience with her, but it became clear as I was moving forward that that was exactly what I was doing.”

Hansel, who had long related to the world through the words it offered her, said that this particular creative endeavor was also her self-care practice.

“There are other ways of providing self-care, but writing is a form of that because it is taking time out of the direct line of fire and taking stock and paying attention to what’s happening in your own inner self,” Hansel said. “Poems in many ways act as a portal, a doorway between the self and some other experience.” 

In a post for AlzAuthors — a blog and podcast that spotlights authors whose lives have been somehow touched by dementia — Hansel called herself a “meditation dropout,” saying that writing is how she experiences the pause practitioners observe between inhalations and exhalations.   

“Yes, breath is one continuous, mostly involuntary, movement. Yes, there exists a slight gap within that movement through which awareness can enter,” she writes. “For me, writing is that gap. And by writing, I don’t just mean the act of putting words onto paper or screen, but the act of noticing what is, while knowing that words will someday be what I make of it.” 

A palindrome describes something that is the same whether it is examined backwards or forwards. Hansel titled her book Palindrome and explored how the intimacy with her mother evolved and mirrored itself as time passed. 

“What I began to understand was that, between my mother and myself there became a physical and emotional intimacy,” she said. “A caregiving intimacy, the same kind of intimacy that my mother might have felt with me when I was a child. I began my life with her caring for me, and she ended her life with me caring for her. That intimacy is a gift. It’s a hard-earned gift. You begin to look for those moments of tenderness, of closeness, to accept what is there instead of always looking for whatever isn’t there.” 

Palindrome explores the duality inherent in the caregiving relationship — “what is difficult as well as what is a gift.” 

You Never Were

the mother I wanted at the time
I had you. Always I was
swallowing down the longing
rising for the mother
come and gone. The one

whose cool hand nested
in a tangle of my curls. The one
whose hair was blueblack
crow, caught midflight.
Once gravity had settled you

to ground, and I away
from you, I hungered
for the mother whose shovel
shouldered through red clay
to bring up bulbs I’d plant,

still clinging southern soil, in my
midwestern garden. Today it is
the mother who remembers
this I want, even as I hover
over you, my fingers

feathering the dark threads
woven through your grey.
I would cling
to whatever does not change
if I could find it.

(Pauletta Hansel, from Palindrome, Dos Madres Press, 2017)

Both Copeland and Hansel were published poets prior to their books that explored dementia, but they said that you don’t need a writing background to self-express this way. 

“You can’t get over something. You can only go through it to get to whatever the other side of it is. I think that writing is, for many people, a way of being able to give oneself the insight and the courage to get through situations that simply need to be endured,” Hansel said. “It is certainly possible that I could have been writing and journaling and not writing anything that anyone would see.” 

Copeland suggested that Care Partners start free-writing or gratitude journaling. 

“I think we all need creative expression at some point in our lives,” she said. “I think it can be a very healing process. You don’t have to be a writer, you just have to give voice to something you want to express. A poem, or a paragraph or whatever works.”

AlzAuthors cofounder, manager, and board president Marianne Sciucco says that whatever is written can remain private or can be shared among close family members. 

“(Tell yourself) it’s not going to be a book,” Sciucco said. “It’s just for me, and that gives you permission to make it.”

For those who’d like a little extra guidance on the journaling front, Hansel offers a free, guided journal designed specifically for Care Partners. Hansel and author Annette Januzzi Wick will also offer a virtual “Caring for the Caregiver” writing workshop Nov. 14, from 10am-12pm. 

“In our writing workshops, that’s the most important thing is self-expression, but we also have opportunities in our workshops for people to share with each other as well,” Hansel said. 

The community that results from self-expression is an anecdote to the isolation that sometimes accompanies care partnership. 

 “People want to know they’re not alone,” Sciucco said. “They would hunger for stories. If this person could make it through, I could make it through. It gave them confidence.” 

Marianne Sciucco

For some writers who discuss their work on AlzAuthors, sharing their hard-earned wisdom offers a way to pay it forward. 

“There are certainly other creative practices that are certainly very useful,” Hansel said. “Whether it’s visual art or music, or singing with other people. There are many ways that people can find their self-expression. Writing just happens to be mine.” 

Jim Laird, who supported his wife Audrey through Alzheimer’s, found that playing acoustic guitar was particularly soothing. 

“One of the things that I kept hearing was that self-care was very important and one of the ideas that had been mentioned at various times was learning to play a musical instrument,” Laird said. 

He played for Audrey, and, after she went to sleep, he played for himself. 

“I would spend two hours playing guitar straight,” he said. “Without stopping. It was a way of comforting my soul in the midst of very little comfort… It isolates you from the pain that’s all around you.”

Laird said that becoming a Care Partner for his wife also changed the way he interpreted music.

“Songs that weren’t intended to touch on Alzheimer’s screamed Alzheimer’s to me,” he said, referencing Bob Dylan’s “Make You Feel My Love.” 

“That song perfectly describes the situation that a spouse is trying to deal with when dealing with dementia,” Laird said. “You lose the ability to communicate. You cannot communicate with words. To make her feel my love was my goal just about every hour of every day.”

He ultimately wrote a song for Audrey. 

Without You, I’m Gone

Verse 1:

I knew you were leaving

My love couldn’t hold you

I did my all, but couldn’t keep you

And now without you, I’m gone

Chorus:

Without you, who am I

Without you, I don’t know why

Without you, there’s no reason

But without you, I must try

Verse 2:

You forgot that you once loved me

You didn’t know me anymore

When the time came I wasn’t ready

Without goodbye, I watched you gently fly

Verse 3:

You helped me become a man

You showed me the way

You loved me just as I am

You filled my heart every day

Verse 4:

In the silence, I still hear your voice

In the darkness, I still see your smile

While walking, I still hold your hand

Late at night, I still love you

© Jim Laird 2024

For Laird, the artistic process is spiritual. 

“It goes to the depths of who we are as people created in the image of God,” he said.