'Mosaic Moon' - Description:

In Honolulu, Hawai'i, caregivers meet at a writing workshop and together create the life-changing poetry in Mosaic Moon. Yet this book is much more than a collection of inspirational poetry. It is a unique resource for anyone with a loved one suffering from Alzheimers disease or other long-term illness. Here is a writing tool for non-writers, brimming with ideas and techniques for finding solace in journaling and poetry. Designed for both individual caregivers and for support groups conducting workshops, Mosaic Moon offers hope, humor and a powerful antidote to the heavy burden of caregiving. More than an extraordinary collection of inspirational poems, Mosaic Moon is a unique resource for those with loved ones suffering from Alzheimer’s disease or any other long-term illness. Created from workshops conducted for the Alzheimer’s Association by noted poet and educator Frances H. Kakugawa, is a writing tool for non-writers, full of ideas and techniques for finding solace in journaling and poetry. Designed for both individual caregivers and for support groups organizing their own workshops, Mosaic Moon offers hope, humor and a powerful antidote to the heavy burden of caregiving.

Paper; 218 pp. Author: Frances H. Kakugawa; Publisher: Watermark Publishing, HI, 2002

from Island Scene Magazine:

Circle of Solace: Poetry helps Alzheimer's caregivers transcend the daily burden of care.

A retired Department of Education resource teacher, Kakugawa is the published author of four volumes of poetry. For five years, she served as the primary caregiver for her elderly mother, who had been diagnosed with Alzheimer's. Having found writing a "saving grace" that helped her manage the tremendous burden of care, she founded the poetry and journaling support group for the Alzheimer's Association-Aloha Chapter [in 2000].

Mosaic Moon portrays the group's collective spiritual journey born in the depths of despair. The poems attest to the durability of the human heart, and to the power of creativity to heal and transform.

When she retired in 1996, Kakugawa had looked forward to traveling. Instead, she began an endless drill of bone-gnawing exhaustion. The eldest of five siblings and the only one unmarried and without children, Kakugawa found herself "squeezing out urine from carpets and bedding, scrubbing bathroom tiles at 3 a.m., staying up nights, answering constant calls." She couldn't sit down to a crossword puzzle or finish a meal without interruption.

Nearing her wit's end, Kakugawa finally linked with local support groups, and found catharsis and renewal by venting her frustrations in her journal. Without such help, caregivers are at increased risk of developing depression and health problems, or of even abusing their loved ones. "So the golden rule of caregiving is to take care of yourself first," says Kakugawa.

When 91-year-old Matsue died peacefully in her sleep, Kakugawa felt her mother was finally set free, leaving her with a precious legacy of lessons.

Mosaic Moon contains many of those lessons. Like those paradoxical Island moments when the sunshine perseveres through heavy rains, humor mixes seamlessly with loss in the poems. They encompass a symphonic gamut of emotions: wrenching sorrow, guilt, anger, resentment, hope, tenderness, even joy. They powerfully testify that memories may wax and wane, but love endures. --Naomi Sodetani, Island Scene Magazine

Attests to the power of creativity to heal and transform. Without such help, caregivers risk depression and health problems.

Product Description Mosaic Moon is much more than an extraordinary collection of inspirational poetry. Here is a unique resource for anyone with a loved one suffering from Alzheimer's disease or other long-term illness. Created from poetry workshops conducted by the Alzheimer's Association Aloha Chapter, this writing tool for non-writers is brimming with ideas and techniques for finding solace in journaling and poetry. Designed for both individual caregivers and for support groups organizing workshops, Mosaic Moon offers hope, humor and a powerful antidote to the heavy burden of caregiving.

— Naomi Sodetani

Hawaii Woman (January 2003):

A noted poet and educator, Kakugawa, personally cared for her ailing mother for one-and-a-half years. During that challenging period, as she watched her mother regress, miraculously she herself was reborn. Each day brought new trials and intense emotions — fear, frustration, fatigue helplessness, despair — all of which served as fuel for her poetry. Writing not only became a way for Kakugawa to chronical her experiences as a caregiver, but it became a way for her to grow, to find strength and to feel serene and grateful even in the most trying of times. "I told myself, I don't care how ugly and hard care giving can be. It's okay because I'm writing these poems," she says. "It's the process of giving life to something versus the process of dying."

And so it could be for others, she thought. A meeting with Janet Bender, executive director of the Alzheimer's Association Aloha Chapter, resulted in the launch of a support group where, through poetry, Kakugawa helped fellow caregivers identify, cope with and express their bewildering and often disturbing rush of feelings.

Twelve people attended the first two-hour monthly session in March 1999, none of whom had done any creative writing before. The work of five of these participants — Lynne Halevi, Lani Kaaihue, Setsuko Yoshida, Irene Asato, and Jody Mishan — appear with Kakugawa's poems in the recently released book "Mosaic Moon: Caregiving Through Poetry ", an extraordinary, insightful journey through the emotionally rugged terrain that defines caregiving.

In her Christmas Letter of 1997, the year her mother was diagnosed, Kakugawa told all her friends that she had taken on the role of caregiver. She expected them to say, "You poor thing; It's so hard." Instead, one friend wrote, "There is something divine about caregiving." The word 'divine' stuck in Kakugawa's mind. "I told myself I'm going to find the 'divine' in caregiving." That single word, asserts Kakugawa, changed her whole attitude toward caring for her mother. Instead of succumbing to anger, depression, and self-pity, she resolved to maintain a disposition of cheer and tenderness. Mother Into Child, Child Into Mother, the very first poem she wrote as a caregiver, muses

     There must be hidden
     Somewhere,
     A gift very divine
     Into this journey back.

Kakugawa brought her mother to live with her in 1999. By that time, she says, "She didn't know where she was. She didn't realize she was on Oahu with me, she thought she was still in her own home on the Big Island." Occasionally, there were moments of hope and happiness, as Kakugawa recounts in A Mother's Day Gift:

     Her eyes are clear, her smile rich with joy.
     She acknowledges the blooming pink asalea plant.
     She thanks me for all I've done and apologizes
     For all the troubles she's caused me.

     She smiles and says good-bye when I leave.
     What force cleared her plaque-ridden brain
     And told her it was Mother's Day?

But for the most part, the path led downhill, as the poem concludes, NEXT DAY: The briefly opened window was sealed. She knew neither my face nor name.

In addition to losing her memory, Matsue Kakugawa Went from Walking unassisted to using a walker to being confined in a wheelchair. She was an insomniac, Often staying awake until three in the morning, hallucinating monsters living in the paintings on her bedroom walls.

"I thought, Oh no, please don't say that because that's so abnormal," recalls Kakugawa. "I knew it meant she was getting worse. I couldn't convince her otherwise, and I had to strip her bedroom of artwork and other things she thought were going to hurt her."

Eventually, Matsue became incontinent and stopped speaking. She live the last one-and-a-half years of her life in a nursing home at Kuakini Medical Center, "A shell of a woman," as Kakugawa describes her in Thief:

     Then the thief came quietly into the night.
     Like that fog on little cat feet.
     An slowly began to rob her
     Of what was rightfully hers since her birth
     Childhood memories
     Dates and Places.
     Yesterdays and todays
     Childhood memories
     Even family faces.
     Oh so quietly, so silently
     Stolen without a sound.

Through it all, writing helped ease Kakugawa's anguish. "Each time I wrote a poem, I felt it was a gift from my mother and Alzheimer's," she says. "Each time I wrote a poem, I felt it was a step toward the divine." In Wings she exults:

     If you had ears,
     My delicate little butterfly,
     You would hear my voice
     Aged with wisdom say,
     "Freedom, my dear,
     Comes not with wings,
     Pretty as they may be
     No, freedom comes
     through the expansion
     of my little mind.


Kakugawa's poetry support group continues, with new caregivers discovering the power of creative writing. "They need to go through the process themselves," she notes. "It's a gradual learning process, but the transformation — the healing, the enlightenment — will happen. Art in whatever form puts us in touch with our humanity. There is so much good that results from it, not only for the patients but for the caregivers themselves because when your loved ones are gone, what are you going to be left with? Yourself."

In emerging victorious from her own struggles, Kakugawa has come to the realization that "The purpose of "Mosaic Moon" is to help our loved ones receive the most compassionate, loving care possible. My work with the Alzheimer's Association and the poetry support group is all about helping people transcend the burden of care with love, understanding and kindness so all this can be transmitted to our loved ones. They're our goal."

Kakugawa completes her poignant journey in Bless the Divine:

     What other path is there
     Except the divine
     Where love, kindness, compassion
     help me discover little pieces of myself
     That make me smile,
     Bringing me such quiet joy
     At the end of each day.
     When she is gone,
     The gift she gave me of myself
     Will bring me such sadness
     but lasting peace.

— Hawaii Magazine article by Cheryl Chee Tsutsumi

C. Pang (Honolulu HI) writes:

This remarkable book should have been subtitled "Searching for the Spiritual in Alzheimer Caregiving through Poetry". This is what these five intrepid women set out to do. It's hard to think of a more unlikely combination -- but you know what? They found it! Maybe the subtitle should have been "Finding the Spark of the Divine in Alzheimer Caregiving through Poetry." In 15 years of practicing as an internist and caring for numerous patients with Alzheimer's disease and their caregivers, I have never seen anything like it!

Carinig for Alzheimer's victimes has to be one of the most disheartening experiences one can imagine. Up to now, there has been very little to offer caregivers in surviving the process -- this discovery is sorely needed and welcome -- and to me, truly amazing. Hope and the possibility of transcending spiritually the rigors of the situation can be extremely powerful.

None of these women are Maya Angelou or Emily Dickinson -- in fact, that is the whole point -- this is something that anyone can discover with the will and a little work and thoughtfulness. The hope of this book is to share this journey with others who may be able to benefit from it. This book is recommended for caregivers (and not necesarrily just of Alzheimer victims) and anyone in the helping profession looking for something to offer caregivers. But it is also recommended for anyone that's human,for it speaks directly to the humanity in all of us.

- Mary Kaye Ritz, Honolulu Advertiser

from The Hawaii Herald (October 4, 2002):

CAREGIVER POETS

Author and poet Frances H. Caught herself pondering a frivolous thought. Stuck in traffic, she watched a woman with a black umbrella journey across an overpass. Had it been a red umbrella, she thought, how much lovelier it would be against the azure backdrop of the sky. The thought was a relaxing moment in her mind, a mini respite for her brain as she drove her incoherent elderly mother with Alzheimer's to adult day care.

The work of a caregiver is an ordeal that tests the human spirit in every possible way, seven days a week, sometimes 24 hours a day, with hardly any time off. The demands on the individual are relentless, often sapping away the very energy they desperately need to care for their loved ones. The "thief," the label used to describe Alzheimer's disease, victimizes both patient and guardian — frustrations in equal measure to both parties. Yet, the caregiver "angels" refuse to give up. Not on their loved ones, or on themselves. Hence, the rise of a poignant moon.

In Mosaic Moon, the personal struggles are at times, uncomfortabley graphic to read. But the experiences are truthful, with poems covering the range of feelings, emotions, and common occurrences in which caregivers inevitably find themselves immersed. There is no glamor here. Alzheimer's is not pretty, but the compassion that shines through is beautiful. It reads more like a collection of diary entries than a book of poetry.

Nonetheless, the accounts expressed in verse will raise the consciousness of society. The book reveals that there are still kind and compassionate people in the world. What would the rest of the world be without them?

The project began with six women of various backgrounds, joined by a common thread — a husband, father, mother, or loved one afflicted with Alzheimer's. Ironically, the disease that created havoc in their lives brought them together to provide one another with invaluable group support.

Led by Kakugawa, with the encouragement of Janet Bender, executive director of the Alzheimer's Association Aloha Chapter, poetry writing was introduced as a useful aid for easing the stress of caregivers. A whole new world opened up for them, a world strictly their own.

The women poets make up an interesting group. Kakugawa, whos mother was afflicted, was a teacher, writer and published poet.

Lyn Halevi, who cared for her husband, had a master's degree in speech pathology and taught at the University of Hawai´i. Victor, her husband, was a captain in the Second World War and a successful sales executive who spoke three languages.

Lani Kaaihue, whose father was afflicted, was a vice-president at one of the largest banks in Hawai´i. Her father was a highly decorated staff sergeant who later became a Civil Air Patrol Pilot and a captain at Hawai´i State Prison.

Setsuko Yoshida, a registered nurse, was taking care of her husband, Patrick. Years earlier he had done the same for her when she contracted tuberculosis and, later, suffered from a nerniated disc. He provided care for both her and their young son. He was a soldier in the 442nd Regimental Combat Team who later became a real estate broker and an insurance agent.

Irene Asato, who continues to care for her mother, returned to Hawai´i after living in San Francisco and working as a secretary. When she was a child, her father abandoned the family, leaving them to grow up in a "Japanese Camp" in the poor side of town.

Jody Mishan, originally from New York, still has her father to care for, while working as a writer and producer. She studied drama and was accepted by Yale Drama School's Master of Fine Arts Program. Her father was a Navy pilot who received the Distinguished Flying Cross for Valor. He toured the world, teaching aviation in London and at the University of California at Berkeley.

If there is a common characteristic among the afflicted featured in the book, perhaps it is tenacity, the strength that helped them to perservere and become successful in their own right. Their Biographies offer glimpses into their past — their personal hardships and triumphs — as we meet them as younger men and women. We also come to know the caregivers and their relationships with their loved ones. Through the caregiver's poetry we see them as being as tireless and dedicated as those they care for, despite the changing dynamics of the relationships, the ebb and flow of feelings, and the suffering caused by an illness that's not even their own. We also see abiding and transforming love.

"Both patients and caregivers slowly evolved into new people who simply haden't existed before." according to Janet Bender, executive director of the Alzheimer's association. "Almost every caregiver's journey began with anger, frustration and confused helplessness. But negative attitudes and feelings began to dissipate, replaced by the renewal for a truer self."

But the metamorphosis doesn't happen overnight.\

In "Oscar Time" Kakugawa sees herself as best supporting actress for her "acting ability" in maintaining her composure around her mother. Wher her mother hallucinates about a baby being in bed with her, she remains unfazed, even as the thought scares her half to death. She keeps her composure even when she responds to her mother's questions for the 150th time, responding as though it were the first. She remains calm as she cleans the bathroom floor after her mom had a little "accident."

Other caregivers would seem themselves and easily relate to "Oscar Time."

Another poem "Drought," expresses succinctly Kakugawa's feelings of being "sucked dry of life," like soil slipping through the fingers of a farmer. "Will the rains never come?"

Lynn Halevi's poem "Keeping Busy" captures precisely what a caregiver's day is like, right down to its anxious rhythm. She writes about having a packed schedule, with reminders to herself, emotions spilling over, errands to run, things to do; she keeps busy, blocks the sadness, and stays positive. The internal dialogue races like the Kentucky Derby.

For those wanting to experience what it's like to be a caregiver, I would recommend reading this poem 10 times—fast.

Another poem that really struck home was Lani Kaaihue's "The Car." She expresses what it was like when the decision was made to no longer allow her father to drive. Taking away the keys meant more than taking away his freedom; it was like taking away a part of himself.

I struggled through a similar situation with my father and found this to be surprisingly comforting. The thoughts and feelings I've had about my own situation were right there in the poem.

Setsuko Yoshida's "Reality" illustrates the inner strife of spirtuality warring against human nature and the struggle to maintain control.

All caregivers, or preceptive individuals for that matter, would appreciate the inner conflict and enlightenment expressed in this poem.

In "Mom" Irene Asato's perspective of her mother paints a picture of a woman who suffered personal hardships yet never allowed the pain to penetrate her facade:

     Whenever I see and ask you,
     How are you doing?
     You always reply,
     "Everything is perfect."

There's an entire life story going on here, with so much hidden feeling and emotions. Its poignant in its simplicity.

"Moonbeams" shine through Hody Mishan's piece. Caregivers are described as flowers blooming in the night. They come together to share their feelings, awaken their spirits, and celebrate as kindred souls."

Mosaic Moon is not a book at weakness. It is a book about strength that arises when one offers one's self to another. Spirituality comes into play when there's a sincere desire to give loved ones the care, respect and dignity they so deserve in their final years.

- Reiko Nakama Tom, Hawai´i Herald.

Sharon L. Goodman (Indiana, USA) writes:

Naked Hearts & Feelings

Kudos to Frances H. Kakugawa. She has done the near impossible. She has drawn caregivers into an environment so filled with trust that they found the courage to be truthful about caregiving. Caregivers, as the contributing authors of MOSAIC MOON Caregiving Through Poetry, bear witness to some poignant facts including...

1. Caregivers are often (usually?) people without medical training. 2. Caregivers are usually filled with love for their patient & grief for their own losses. 3. Caregivers' personal services and sacrifices are not to be taken lightly.

Frances H. Kakugawa, in birthing this remarkable book, has provided insightful evidence that caregivers are usually individuals who set aside their own lives, draw deeply on their own human love and miraculous God love, to put someone else's needs before their own for an indefinite period of time.

I challenge anyone who does not think caregiving is a daunting task to read this book. Then consider who their own caregiver will be when the time arrives that they cannot care for themselves, and let their imagination wander....

'Mosaic Moon' - More Information:

Hawaii Woman (January 2003): "FRANCES KAKUGAWA NEVER CRIED."

Not when she was on her hands and knees in the wee hours of the morning. scrubbing her mother's excrement off the bathroom floor.

Not when she was removing a painting from a bedroom because her mother believed demons were going to jump out of it and harm her.

Not even when Alzheimer's disease had ravaged her mother's brain to the point where she didn't recognize her own daughter any longer.

The tears didn't come until Matsue Kakugawa peacefully slipped away in January 2002 at age 89, two weeks before her 90th birthday

Only then, when she was alone in the shower, did Frances Kakugawa allow herself to weep. "Somehow, with the water and my tears mixing," she recalls, "it felt cleansing. I don't like to cry because I feel I'm going to totally disintegrate into a heap of nothing and cannot bring myself together again. Maybe that's why I write — to release my emotions through writing."

— Hawaii Magazine article by Cheryl Chee Tsutsumi