Sacramento woman uses poetry to change dementia caregiving
By Kerry Larkey, MSN, RN
Author, poet, daughter, caregiver and advocate; Frances Kakugawa shares her experiences to help others in Sacramento learn about Alzheimer’s disease. In 1999, her mother was diagnosed with Alzheimer’s and Frances became her primary caregiver. Now, as the creator and facilitator of a poetry writing support group, Frances wants to change how others experience caregiving by exploring compassion and dignity through creative writing.
Frances and Matsue’s journey with Alzheimer’s
Frances remembers her mother, Matsue, as an incredibly caring woman with wisdom far beyond her 5th-grade education. Matsue was known to others for her kind and gentle spirit. A woman of Japanese descent, she lived in Hawaii and worked at a flower farm. Matsue helped to raised five children, of whom Frances is the middle child.
Like many people living with Alzheimer’s, Matsue’s cognitive decline was gradual. Sometimes family members do not notice the 10 early signs and symptoms of Alzheimer’s until a bigger event draws attention to the issue. “We don’t always see the symptoms,” Frances agrees.
The first clue that Matsue was struggling came when a neighbor found her walking in her own neighborhood, lost and unable to find her house. The neighbor told Frances about the incident and the conversation changed everything. Soon after, Frances, retired, moved her mother to Honolulu to become her primary caregiver.
The face of caregiving
Like Frances, approximately two-thirds of dementia caregivers are women. Data released last month from the Alzheimer’s Association® 2023 Alzheimer’s Disease Facts and Figures report shows that among primary caregivers of people with dementia, over half take care of their parents. One-third of dementia caregivers nationwide are daughters caring for a parent.
The number of people living with Alzheimer’s is growing and more caregivers are needed to care for them. According to the Facts and Figures report, from 2020-2025, Hawaii alone is projected to have a 20.7% increase in the total number of people aged 65 and older with Alzheimer’s dementia. California is expected to see a similar increase of 21.7% with an even greater increase in Nevada at 30.6%.
“It was a very emotional journey,” Frances says of caregiving. Facts and Figures report also states that fifty-nine percent of family caregivers of people with Alzheimer’s rated the emotional stress of caregiving as high or very high. “Caregiving really changes us,” Frances goes on to explain. “It’s a great humanizer that forces us to be in the present.”
Finding support in her community
Fortunately, Frances recognized the need for extra support and joined the Alzheimer’s Association support group in Hawaii. “They just opened their arms to me,” she says, “and I really appreciate that. I think the Alzheimer’s Association is doing a wonderful job. That’s the first place I turned to and there were all types of support groups. It made me feel, not only that I’m not alone, but because the loved ones are in various stages of the disease, the group prepared me for things to come.”
Like Frances, many caregivers benefit from the Alzheimer’s Association support groups. The Facts and Figures report shows that support groups allow caregivers to share personal feelings and concerns to overcome feeling alone. Studies have also shown that caregivers who connect with other caregivers through support groups have a higher quality of life.
The power of words and a red feather boa
As a support group participant, Frances noticed the choice of words used to describe their struggles. She believed that words could change the way people experience challenges. “The vocabulary we use builds our attitude and results in certain behavior,” she explains. “For example, replacing ‘coping’ with ‘embracing’ can transform our attitude. Or replacing ‘defensive behavior’ with ‘trying to retain their own dignity’ or ‘trying to retain who they still are,’ bring understanding and compassion.”
Poetry is the perfect tool for exploring the significance of words. The realization hit Frances at 3 a.m., the first time she cleaned her mother’s bathroom. As she sat there scrubbing, exhausted and drained, Frances suddenly wondered. “Maybe there’s a poem here.
“The moment I said that, I was no longer a poor caregiver. I was a poet/caregiver,” Frances explains. “There were two of us in the room; there was me cleaning the floor but there was also a poet/caregiver thinking, ‘How should I write this poem?’”
Later, Frances chose glamour and humor in her poem, “A Feather Boa and a Toothbrush”. Writing about her struggles helped Frances become a more patient and sensitive caregiver. “Through the poetry you can see all the transformation happening, turning someone into a state of pure compassion,” she says.
Frances’ poetry support group for dementia caregivers
Inspired by her writing, Frances volunteered to start a poetry writing support group for caregivers with the Alzheimer’s Association Aloha Chapter. “I knew how valuable it was for caregivers,” Frances says. The first two support groups worked out well. When Frances moved to Sacramento several years later, she started a poetry group with the Alzheimer’s Association Northern California and Northern Nevada Chapter.
Participants write poems at home and share them with the group ahead of time. At the meeting, people respond to each other’s poems and talk about their caregiving experiences. The group meets online monthly since the pandemic.
Caregivers are welcome to join. No writing experience is required, just a willingness to try. “I enjoy working with people whose only writing is shopping lists,” Frances laughs.
Participants are encouraged not to worry about spelling, grammar, or form. “Just write what’s inside of you,” Frances guides. “We go for content. I don’t go into improving their poetry. Eventually, they bring in their images, the poetic inferences, the language of poetry and metaphor. Eventually, they naturally evolve without lessons on poetry writing. That’s the process of writing.”
Transforming how caregivers cope with challenges
Through writing, support group participants explore their emotions and reflect on challenges related to caregiving. “Instead of being frozen in their own personal feelings [they] learn to put some distance and they get to see a new person evolving in front of them,” she explains.
As one male caregiver wrote: How could a man writing poetry make him stronger and a better caregiver? Yet, this happened to me.”
Like Frances and the feather boa, participants learn how to change their perspective from caregiver to poet. The new viewpoint can help turn difficult emotions like frustration or anger into kindness and compassion. “[Writing poetry] gets you back to your own humanity,” Frances explains.
“There is something about writing poetry that helps you make so many decisions,” Frances continues. “You have to pause and say, ‘Is this me?’ You may have a caregiver who is angry or negative and listens to another caregiver’s poetry about compassion and love. This becomes a change agent for them, too.”
“Speak to me for I am still here”
Poetry also shifts how caregivers relate to their loved ones as the disease progresses. “Many times I use the voice of my mother. You see caregivers when they’re frustrated or sad and when they give voice to the one they’re caring for, it really changes things,” Frances says.
In a passage from the poem “Emily Dickinson, I’m Somebody”, Frances writes from Matsue’s voice to express her mother’s desire to be cared for with love and humanity:
My words have all forsaken me, My thoughts are all gone. But do not let this thief Forsake you from me. Speak to me for I am still here. I understand hugs and smiles And loving kindness. Speak to me and not around me. I am not a she or her or even a room number. I am still here.....
By writing from her mother’s perspective, Frances better understood how her attitude impacted her mother. “It dignifies the whole process of giving care,” Frances clarifies. “Caregivers find out whatever we do to my loved ones, we do to ourselves.”
Sharing caregiver poetry with the world
Frances collected the caregiver’s poems from the first support group and created a book called Mosaic Moon: Caregiving Through Poetry. The book explains the process of creating caregiver poetry. She has written two additional books of poetry: Breaking the Silence: A Caregiver’s Voice , I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving.
Frances is also the author of a children’s book series about a poet mouse named Wordsworth who uses poetry to resolve human problems. In Wordsworth Dances the Waltz, the mouse brings insights to the adults about his grandmother who is beginning to lose her memory. Wordsworth teaches that grandma is still grandma whether she has her memory or not.
In November 2022, The University of Hawaii premiered a musical adaptation of the first two Wordsworth books: Wordsworth the Poet and Wordsworth Dances the Waltz. Frances and Wordsworth continue to work with children at all levels.
After Matsue passed away in 2002, Frances began speaking at national conferences about her experiences and the transformative power of poetry. Frances’ goal is to bring love, compassion and dignity to caregivers and their loved ones with all the lessons she’s learned as a poet/caregiver and with her work with other caregivers.
Frances now lives in Sacramento and continues leading poetry support groups. Strengthened by the memory of her mother—and a red feather boa—Frances still advocates for caregivers and people living with Alzheimer’s. She cultivates her love of language and inspires caregivers to experience more dignity and compassion. “It’s such a joy to use poetry,” Frances says, “and to be given the opportunity to help others do this, too!”
The Sacramento Writing and Poetry Dementia Family Caregiver Support Group meets the first Thursday of the month from Noon-2 p.m. For more information or to register for this online support group please contact the Alzheimer’s Association 24/7 Helpline at 800.272.3900.
Facts and Figures is an annual report released by the Alzheimer’s Association. It reveals the burden of Alzheimer’s and dementia on individuals, caregivers, government and the nation’s health care system. Download your copy and learn more at alz.org/facts.
Check out alz.org/asianamericans to learn what the Alzheimer’s Association is doing to address health disparities and provide support for Asian Americans and Pacific Islanders living with Alzheimer’s or another dementia.