Former Big Island Resident on Surviving the Trials and Tribulations of Caregiving Through Poetry

Reprinted with permission from Author Guy Aoki.  Originally posted in the Rafu Shimpo

One of the fondest traditions of my life was going to my grandma’s house in Pahoa for the major occasions: Easter, Thanksgiving, Christmas, New Year’s Eve, and New Year’s. It was where our Hilo uncles, aunties, and cousins — and eventually, their children — gathered and grew up through the years. And we had a lot of fun with our “hip grandma,” who had a great sense of humor and always seemed so sharp and healthy (she never got sick), toiling away in the vanda fields into her 80s. I’d hoped to be as “with it” as her if I reached that age.

This past Friday, Feb. 4, marked the 100th anniversary of her birth.

In Pahoa: standing left to right: Paul Kakugawa, author Frances Kakugawa, Albert Kakugawa, Matsue Kakugawa, Sadaichi Kakugawa; sitting: Janet Aoki.

By 1995, it was clear Matsue Kakugawa had Alzheimer’s. She repeated questions she’d just asked seconds ago, eventually became hostile, accused her children of stealing her money, and woke up in the middle of the night thinking it was time to go to work. Her three Hilo children and their spouses took turns sleeping over at her house for a year-and-a-half. When it became difficult to continue, my Aunty Fran took her to live with her in Honolulu for another year-and-a-half.

Though she’d admitted having difficulty facing negative situations, Frances Kakugawa somehow managed to become a caregiver on a daily basis coming face-to-face with the obscene: feces splattered around a room, clothes soaked in urine, a mother whose mind was no longer there. Still, she kept her sanity, finding sanctuary in poetry. After all, between 1970 and 1976, she’d published four books of poems (“Sand Grains,” “White Ginger Blossom,” “Golden Spike,” “The Path of Butterflies”) but, as much as I’d encouraged her to “maintain your following” by writing more books, she didn’t have the initiative. Until faced with my grandma’s disease.

It became a way to deal with the stresses, laugh at the absurdity of it all, and feel sorry for herself. In Honolulu, she began organizing monthly support groups for the Alzheimer’s Association where she encouraged many of the locals to write about their feelings as they took care of their parents. Some wrote in journal form — which was rather easily transformed into poetry — while others wrote poetry from the get go, surprised at their skills as many had never seriously attempted the art form before.

The point was not to become the next Keating or Kipling, but to cathartically express all aspects of their emotions without judgment, shame or guilt and to be better able to carry on when returning to their duties at home.

My grandma spent her last year-and-a-half in Kuakini Medical Center. In December 2001, in her hospital room, I played a studio recording I’d made of “Hey Thief,” a song inspired by my aunty’s poem of the same name, the “thief” being Alzheimer’s. Matsue Kakugawa died a few weeks later on Jan. 16, 2002, 19 days before her 91st birthday. We played the song again at her funeral.

At Kuakini Medical Center on Dec. 21, 2001: Guy Aoki, Matsue Kakugawa, and Frances Kakugawa.

The poetry of Frances Kakugawa and members of her support group gave birth to 2002’s “Mosaic Moon:  Caregiving Through Poetry,” her first book in decades. Whereas that volume focused more on the trials and tribulations of caring for relatives with Alzheimer’s, her latest, “Breaking the Silence: A Caregiver’s Voice,” deals a little more lightly on the subject and includes work from five fellow caregivers who came to her monthly support groups in Honolulu and Sacramento (where she now lives) and helped not only Alzheimer’s patients but those suffering from stroke and cancer. It also deals with carrying on after relatives die.

(Full disclosure: The book is dedicated to me and my fellow cousins; heck, this entire article is a conflict of interest!)

As always, there is humor as in this untitled piece by Red Slider:

Caregiver: I sifted through the ashes today and, indeed found that the hand of God was in there, after all.”

Social Worker: “And what did you do then?”

Caregiver: “Handed Him a subpoena for a product liability lawsuit.”

Eugenia Mitchell gave up her partnership at a law firm to care for her mother. In “The Bull Fighter,” she finds comic relief in trying to get her mother dressed:

I am the torero.
I hold not a cape, but her coat,
a bright French blue
instead of Spanish red…
I move the sleeve towards its position.
I follow her restless right arm.
I feint slightly to her left
drawing her toward me.
Quickly, I reverse,
pushing the sleeve
toward her arm again.
But there are the moments when she can no longer stand it (“Have I Given Up?”):
I am tired of living her anxiety…
as she shuffles around the house
lifting every object with shaking hands and
placing it
somewhere more precarious for it
and more perilous for her…
as she yanks the power cords from their hiding place
behind the furniture
and lays new traps to trip herself…
I can’t stand it
I have to stand it
I would rather be screaming

“Breaking the Silence” also gives expression to those whose own voices have become lost in the haze of this disease. After her mother died, Kakugawa continued to visit Alzheimer’s patients at Kuakini. In “Dear Mrs. Kono,” she writes of a 102-year-old woman who doesn’t speak and receives no visitors:

Today, I visited her floor
She took my hand
And held it tightly
And wouldn’t let go.
“Do you remember me?”
I asked in Japanese.
She nodded, nodded, nodded nonstop,
Her fingers curled tightly into mine
As if a lifeline ran between us.
Her eyes filled with tears
When I kissed the top of her head.

One of the saddest stories involves “Nora,” a Nisei caregiver less than 4’10” tall who had to care for her parents, parents-in-law, and husband. Kakugawa encouraged her to break out of the restrictions of her Japanese culture by spreading her wings and discovering life on her own not attached to her deadbeat husband. Then she learned she had fourth-stage ovarian cancer and had six months to live.

In the back of her book, Kakugawa offers a mini-course on how anyone can write about their experiences (or even run their own support group). In response to those who fear, “I don’t know where to begin,” she suggests, “Instead of writing about the overall role of caregiving, zero in on one aspect: a feeling, a thought, or an event. Instead of writing about a whole forest of trees, go for that one blade of grass. Reach deep down into yourself at the gut level, see what’s there, and write about that.”

Even with the oppressive disease dissolving pieces of their minds, the real personalities of Alzheimer’s victims still resurface from time to time. Before she left for Honolulu, my grandmother stood in front of the butsudan, looked at the ihai with her husband’s name on it (he died in 1962) and said mournfully, “Otosan. You’re probably laughing at me.” As Kakugawa recounts in the beginning of her book, my grandmother, just days before she died, told Rev. Bruce Nakamura, “Please don’t let me be forgotten.”

Don’t worry, Grandma, they’re just starting to know you.

To buy autographed copies of “Breaking the Silence” ($15.95), go to http://www.btsilence.com. It’s also available at major bookstores, local shops, and Amazon.com (which also sells Kakugawa’s past works and out-of-print ’70s poetry books).  To reach the author for lectures and workshops, or to just say hi, contact her at fhk@francesk.org. For more info on her life and work, go to www.francesk.org.

Till next time, keep your eyes and ears open. And start writing poetry.

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Guy Aoki, co-founder of the Media Action Network for Asian Americans, writes from Glendale. He can be reached by e-mail. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.

One Response

  1. Guy, I can hear Grandma’s voice saying, “Eh Guy, thank you, thank you.” Or most likely in her own grandma way, “Eh Guy, thanks, eh.”

    Thank you for putting so much of your heart in this story.

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