Special to The Hawai‘i Herald
One of the first poems that appears in Frances Kakugawa’s latest book from Watermark Publishing, “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving,” is succinctly titled, “SOS!” The narrator in that poem pleads: “I am shipwrecked / On this Isle of Caregivers / Send Help!”
The next stanza reads: “A bottle, sealed with wax / Washes up to shore. Inside / A pen and sheets of blank paper.”
And so begins a literary journey into the hearts, minds and souls of caregivers whose form of expression in this book are poetry and the occasional short essay. Including Kakugawa, 12 poet-caregivers share poems or essays they wrote about caring for a loved one with Alzheimer’s disease. Readers, especially caregivers, are likely to nod in understanding as the words unfold on each page, revealing a wide array of emotions and experiences.
Jason Kimura shares a journal entry in which he recalls one day visiting an accountant with his father and listening to the accountant talk about inheritance and estate taxes following the death of Jason’s mother. We can imagine the legalese that was spoken by the accountant in that office and the sense of being overwhelmed by that discussion, combined with the grief of having recently lost a loved one. Those who have been through that experience should also be able to relate to Jason’s reassuring his father not to worry and that he — as the adult son caregiver — would take care of things.
The adult child, in moments such as the one Jason shares, realizes the changing roles, of becoming the caregiver and the protector of a more vulnerable parent. The realization of that role reversal can often evoke a deep sadness from within the caregiver, an emotion that may be difficult at first to put into words — but possible later upon open-hearted reflection.
The English Romantic poet William Wordsworth described poetry as “emotion recollected in tranquility,” and that seems like an insightful definition as poets reach into themselves for the best words to describe significant — and perhaps even transformative — experiences as the lives of caregiver and care recipient become increasingly intertwined, especially when caring for an elder whose physical and mental health are declining.
Jody Mishan writes about being farther down the road on the caregiving journey in a poem about her father titled, “Like a Butterfly.” In this candid and honest poem, she describes the long-term progression of that journey, beginning with when her father was in his second year of Alzheimer’s disease. In his fifth year of the disease, she writes of their morning ritual.
“I have to puree all his food. / It takes me one hour each morning / To slowly and tenderly perform the / Cleaning and toileting ritual. / Encouraging him as I would a baby / So he knows who I am / And that everything’s all right.”
While Mishan doesn’t sugarcoat the caregiving experience, she does balance the challenges with an almost spiritual insight in her concluding stanza about the gifts that can arise from compassionate care:
My father is in his seventh year of Alzheimer’s.
I’ve been with him every step of the journey,
An intimacy no one would want,
But that has come with gifts and blessings.
My touch on his skin is as gentle as a butterfly.
His well-being is as fragile as a butterfly.
I toil to preserve the dust on his spirit wings
So he can flutter into the beautiful light
Seamlessly and in peace.
Frances Kakugawa is known to Hawai‘i Herald readers because of her monthly column, “Dear Frances,” in which readers can ask questions and get her thoughts about caregiving and related matters. She is also a sought-after public speaker as organizations invite her to talk about compassionate caregiving and the healing power of writing.
Kakugawa has dispensed seemingly simple and yet profound advice to caregivers based on her first-hand experiences as a former caregiver to her mother, who had Alzheimer’s disease, as well as the many discussions she has had with people about their role as caregivers. Some of the important messages she has left with audiences and readers have to do with preserving a care recipient’s dignity. For example, Kakugawa knows how frustrating it is for caregivers to be asked the same question over and over again by a loved one who has Alzheimer’s disease. But she encourages the caregiver to practice patience and understanding because the care recipient is not doing it on purpose. Compassion for the care recipient involves treating that person with dignity. If possible, answer the question as if it were being asked for the first time.
In 2001, Kakugawa began to offer writing workshops for caregivers of persons with dementia. She wanted the workshop participants — sons, daughters, wives, husbands — to think of themselves not just as caregivers, but also as poet-caregivers. Some participants were uncertain at first about their writing abilities, but Kakugawa’s welcoming and accepting approach put them at ease. The results were stunning. Many were able to open themselves up first by putting pen to paper, and then to each other.
“Writing took us to a deeper level,” she writes in the introduction to her book, “beyond the physical aspects of caring, down to that depth where our own humanity resides.” She hopes that by reading the book, caregivers will see that there are others like them, sharing in many of the same struggles and challenges, both internal and external. Other readers will be able to get a glimpse – more than a glimpse, really – into the lives of caregivers who have dared to go deep within themselves to find the words that describe the complexity of human relationships, resilience and wisdom.
In “I Am Somebody,” readers will find dozens of poems written by poet-caregivers, including many by Kakugawa herself, as well as fascinating caregiver bios throughout the book and words of wisdom interspersed in poems and prose, 264 pages in all. The book can be read in one long sitting or in pieces, like eating morsels of fine candy a little at a time. Every chapter seems to serve up a different flavor, but they are all delicious and created with compassion and authenticity. There is a refreshing variety in tone and subject matter, including some writing that is light-hearted and even humorous.
As mentioned previously, one major goal that Kakugawa tries to accomplish in many of her writings and talks is to ensure that dignity and compassion are present in the relationship between caregiver and care recipient, especially those suffering from dementia. Her message is a powerful one: Despite all the demands and burdens that caring for someone with dementia entail, the bottom line is never to forget that person’s humanity. The care recipient may no longer have the memories, abilities and personality that he or she once did, but there is a soul within that body that responds to and is deserving of love and compassion.
In the circle of life, the end of life is but a stage of transition for both caregiver and care recipient. Chapter 11 in the book is about death and dying, with writing that treats this topic with sensitivity and thoughtfulness. Setsuko Yoshida, a retired nurse who once cared for AIDS patients, writes about a loved one who has passed on.
“You reach out to comfort me / When I’m alone and feeling lonely, / We are always together / Within Boundless Light and Life / Now and forever more.”
That sense of connectivity and continuity, even after the death of a loved one, resonates in many of the poems in this chapter.
“I Am Somebody” is a spiritually nourishing book that is also likely to be healing for people who lack the words to describe their caregiving experiences, both past and present, and the range of emotions that accompany those experiences. All of the poet-caregivers — Linda Donahue, Frances Kakugawa, Jason Kimura, Rod Matsumoto, Jody Mishan, Eugenie Mitchell, Linda Nagata, Elaine Okazaki, Bob Oyafuso, Red Slider, Mary Swisher, Setsuko Yoshida — offer an assortment of gifts and treasures to the readers of this book in the form of heartfelt poetry and prose.
One day years ago, they sat down with a pen and blank pieces of paper and responded to the encouragement to, “Write, write, write!” That was the answer to their “SOS!” Something amazing happened. Writing was their lifeline, and “I Am Somebody” is their enduring testament to the healing power of writing and words.
Frances H. Kakugawa’s books can be ordered online from Watermark Publishing (bookshawaii.net/frances-kakugawa).
Children’s Books: “Wordsworth Dances the Waltz” (2007), “Wordsworth the Poet” (2003), “Teacher, You Look Like a Horse!” (2003)
On Caregiving: “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving” (2014), “Breaking the Silence: A Caregiver’s Voice” (2010), “Mosaic Moon: Caregiving through Poetry” (2002)
Other: “Kapoho: Memoir of a Modern Pompeii” (2011)
Poetry (out of print): “The Path of Butterflies” (1976), “Golden Spike” (1973), “White Ginger Blossom” (1971), “Sand Grains” (1970)