For my role as social media fellow for AARP’s Asian American Community, I’ve had the pleasure of meeting, speaking with and writing about some exceptional people. Here’s another in a series of pieces I’m cross-posting from the AARP AAPI Community Facebook page that I manage:
Frances Kakugawa’s new book was perfectly timed, to be published in November for National Caregivers Month. An acclaimed poet, author and speaker who conducts poetry workshops for caregivers who help loved ones with Alzheimer’s disease, “I Am Somebody” is part of her series of powerful explorations of what it means to be a caregiver, and the emotional turmoil caregiving can cause.
In “I Am Somebody,” Kakugawa features poems and journal writings from participants in her writing groups, and places them in context by telling their story. It’s a format that is consistent through her series of books, starting with the 2002 publishing of “Mosaic Moon: Caregiving Through Poetry.”
They feature moving verse, powerful and inspirational biographies, and tips for anyone who’s facing the daunting challenge of caregiving, or writing about caregiving. Kakugawa includes her own poetry in her books, because her story is part of the chain that links these caregivers together.
She was herself a caregiver for her mother, who was diagnosed with Alzheimer’s in 1997 and passed away in 2002. Kakugawa, who was by then a professor and poet found herself writing to express her emotions and found it helped free her from some of the stress of caring for her mother.
She went to the Alzheimer’s Association in Hawaii and asked to start a poetry writing group. That group blossomed into other groups, not just in her home state of Hawaii but in California, where she now lives in Sacramento.
She’s also written an autobiography of growing up in Hawaii, “Kapoho: Memoir of a Modern Pompeii” that recalls how at 18 she and her family were forced to move from their home on the big island of Hawaii because lava from the volcano Kilauea destroyed their town. Ironically, the Kakugawa family and their neighbors moved to the next town as a group to maintain their neighborhood, but lava threatened the town, Pahoa, in October of this year.
Kakugawa is also renowned for a series of charming children’s books about a mouse named Wordsworth (a poet) including “Wordsworth Dances the Waltz,” a Northern California Publishers & Authors “Best Book” award-winner. In the book, Wordsworth worries when his grandmother starts to lose her memory and his family treats her as if she’s very ill and needs to be isolated. Instead, he wants to treat his grandmother as still a vital member of the family, and his parents realize that’s the best way to treat her.
“I’m really strong about not keeping our young people from the caregiving world,” she says, explaining that she helps kids in summer school in Sacramento. “What are you protecting them from? Protecting them from being human?”
These themes of accepting and dealing with illness, but with understanding and compassion, not fear, are woven throughout Kakugawa’s body of work. The work sends a powerful message about people with Alzheimer’s: They are still people, trying to hold onto their identity, and their dignity.
In “Mosaic Moon” Kakugawa writes how her mother filled six notebooks just practicing her signature so she wouldn’t forget who she was. “Of course by the end it was all scribbles and lines, no letters,” Kakugawa says. “If I look at it, that’s what the disease does. She was trying to hold onto who she was.”
Once Kakugawa realized what the repeated signatures meant, she says, “It was ‘wow, this is what she was doing,’ and it empowered me as a caregiver.”
In a sadly touching scene from the 2010 book, “Breaking the Silence,” which includes caregivers who struggled with loved ones who suffered from cancer and stroke, Kakugawa notes that before she died, her mother asked a Buddhist minister, “Please don’t let me be forgotten.”
With Kakugawa’s help, anyone who writes poetry or prose about their loved ones is preserving them for posterity, keeping alive their memory.
Kakugawa is also keenly aware of her Asian American roots, and how cultural values can color how we act as caregivers – or as patients. In one chapter of “I Am Somebody,” she writes about Cultural and Social Beliefs like shame and self-effacement and includes poems that tackle those issues.
Those values can make Asians reluctant to even try expressing their feelings, Kakugawa says. “It can take them a long time to come to the sessions…. If you’re Asian, it can be a sign of weakness to go to a support group.”
Instead, she insists, “We have to let go of the cultural beliefs and practices that work against us, like the element of shame, and we have to retain the things that help us as caregivers.”
When she began writing about the last years she spent with her mother, Kakugawa says just the act of expression gave her a new perspective on her caregiver role. “Poetry writing really helped me go beyond my feelings. Everything is in how we perceive things.”
And she’s seen the change in the people who attend her workshops and writing groups. “Caregivers come in fearful, angry and negative, and even with the first poem they write, they find their own voice and they listen to other people speak of their experience.”
What she’s trying to get people to share isn’t just a medical daily journal. “It’s not just a recording of events but to reflect and get to change how we think of caregiving. I try to make people feel that caregiving is a gift.”
After all, she says, “Poetry as an artform can turn even anger into an expression of beauty.”
Frances Kakugawa’s website is at http://www.francesk.org