'Breaking The Silence - A Caregiver's Voice' - Description:

"Breaking the Silence - A Caregiver's Voice" continues the series on caregiving and writing Frances Kakugawa began in "Mosaic Moon" (Watermark Press, Hi). With an entirely new selection of writings, she and five additional caregiver/writers, all of whom have faced the ordeal of caregiving and employed journals, narratives & poetry to help themselves understand and, in some cases, endure this most difficult of all endeavors.

A noted poet and educator, Frances ventures futher into the subject of writing as a tool for assiting caregivers in coping with this cruelist of all diseases. Through a sensitive and supportive commentary the voices of the presenting caregivers/writers along with herself are amplified to make visible the hidden challenges and anxieties that confront any who are thrust into the role of becoming the physical life support and emotional companion to someone they know, from the outset, they will not be able to save.

As a guide to those who are caregivers, "Breaking the Silence", is an excellent way to discover this remarkable tool of writing on their own, even those who have never written more than a few notes to the doctor and some shopping lists. For health professionals, it is an invaluable tool to introduce themselves to subjects that will not be found in any medical text; nor easily discovered in their visits with their patients and clients. It is a heart sound which even the most sensitive stethescope will not be able to hear. It is a sound which can only be heard from the voices of caregivers through their writings and musings; when, that is, the choose as they have done here, to break the silence.

Paper; 218 pp. Author: Frances H. Kakugawa; Publisher: Willow Valley Press, CA, 2010

Breaking the Silence: A Caregiver's Voice is a powerful literary contribution and teaching tool to the field of gerontology. Cullen T. Hayashida, Ph.D. Director, Kupuna (Elder) Education Center Kapiolani Community College Honolulu, Hawaii --Kapuna Education Center

Breaking the Silence: A Caregiver's Voice is a book of enormous hope and transformation. Bruce Jennings Director of Bioethics Center for Humans and Nature New York, NY --Center for Humans and Nature

ADI is the umbrella of all the patient and caregiver associations around the world. We aim for an improved quality of life of people with dementia and their families. Frances' book is written from the same perspective and therefore I'd like to recommend it. Marc Wortmann Executive Director Alzheimer's Disease International --Alzheimer's Disease International

Patricia Blanchette, M.D.,MPH

Frances Kakugawa has written an insightful and moving book that will both help and inspire all who struggle as caregivers for loved ones afflicted with Alzheimer's disease or other dementia. Breaking the Silence is an essential book for Alzheimer's caregivers. It's a thoughtful and honest look into what caregivers face each day, providing a real value for those who must cope with incredible pressure, anxiety, and difficult decisions. It's a compilation of poetry, journal entries, and how-to advice. Frances weaves her own poetry and that of six other caregivers together, along with journal entries and advice for the novice poet. It's a handbook for caregiving survival.
In Kakugawa's poem, "Plastic Orchids," she writes how her 91-year old mother, Matsue, mutters two harsh curse words to herself, recognizing the insincerity of an aide who addresses her by her first name and tells her she loves her. Frances applauds this in her poem-a glimpse of the "real" Matsue, before she slides back into the fog of dementia. Caregivers Eugenie Mitchell, Linda Nagata, Elaine Okazaki, Jason Kimura, Rod Masumoto, and Red Slider add dimension to the book with unique perspectives and shared experiences. In the last section of this book, Frances provides a short course in journaling, writing poetry, using literary elements and devices, and finding your "voice."
This book shows realistic day-to-day caregiving, with all the rewards, challenges, and pitfalls.Medical and other professionals with organizations that deal with and fight Alzheimer's disease, as well as authors, editors, and fellow caregivers, all agree that Breaking the Silence is a major source of inspiration and advice. Whether you are a caregiver, a professional dealing with the disease, or just someone who knows a caregiver or who may someday be in this position yourself, Breaking the Silence will provide you with great comfort and wisdom.
"In the busy world of healthcare, one might think that stopping for a time to read a book of poetry might be time better spent 'catching up.' However, among all of the other gems of wisdom found in this book, Frances Kakugawa reminds us of the Japanese saying 'Iso geba maware,' words spoken amazingly on point by a person with advanced Alzheimer's disease, in overhearing a woman tell of spilling a carefully prepared cup of coffee onto her clothes while suddenly rushing to do something else. "Iso geba maware" translates to the equivalent of "when rushing to do something, one travels in a circle, not a straight line." What wonderful advice to give to a busy health care professional. Slow the rush, take the time to hear your patient, reconnect to the healing art of a person-to-person connection, read a section of this book, be reminded of the person inside the patient."

— Patricia Lanoie Blanchette, MD, MPH.
Professor of Geriatric Medicine
John A. Burns School of Medicine
University of Hawai´i at Manoa

J.W. Niclaus writes:

"If you are not familiar with Johann Sebastian Bach's classical piece 'Air On The G String' then I wholly suggest searching it out, or if you have it find a few moments to settle down, close your eyes, and let the music surround and penetrate you. The piece possesses a sonic beauty that tugs ever so gently upon the heart, satin-soft in its melancholy yet inescapably lifting in its hope and depth. An identical stir from within happens throughout Frances Kakugawa's Breaking the Silence: A Caregiver's Voice. "A writer can use words to connect with the reader, to attempt to place the proper words in the perfect order, but often the best stories tell themselves and the writer becomes less a presenter and more of a companion, a guide with a gentle hand upon the shoulder. Kakugawa does dignified service to those who have sacrificed years of their lives to take care of loved ones which Alzheimer's disease has attempted to steal. Through poetic example and personal stories imbued with gravitas she captures the struggle for both patients and caregivers. "I have been blessed-thus far-to not have had any family ensnared by Alzheimer's. I had casual shadows and grief long held from view, and through their own stories and poetry bravely stepping into the light to justly show the rest of us what caring for another person is genuinely about. From their examples and words come the same satin soft ripples upon the soul, joyful even in their melancholy, hopeful in their remembrance, respectful and dignified for posterity and for all mortals with a heart."

- J. W. Nicklaus
Author: The Light, The Dark, and Ember Between

from Cullen T. Hayashida, Ph.D.:

CAREGIVER POETS

"Frances Kakugawa's Breaking the Silence: A Caregiver's Voice is a powerful literary contribution and teaching tool to the field of gerontology. While our Center provides practical training for family caregivers in the mechanics of caregiving - basics in nursing skill-sets, an overview of community services, key definitions and even how to deal with our parents' stuff, there is so much more regarding the burdens, grief, memories and joys that helps us understand and to mend in time. Kakugawa has been among a few (to the best of my knowledge) who have tried to capture the humanities of our afflicted parents suffering from Alzheimer's and ourselves as caregivers in a literary format. I strongly recommend this book to read, laugh, cry and reflect. I would also encourage the promotion of more courses on writing as therapy based upon her work. Her detailed guidelines and recommendations for instructors may hopefully springboard more activity in this still uncharted waters of the humanity of caregiving."

- Cullen T. Hayashida, Ph.D.
Director, Kupuna (Elder) Education Center
Kapiolani Community College
Honolulu, Hawai´i

Bruce Jennings - Center for Humans and Nature

"In our aging society, care is the most necessary resource, and the most precious. Will we find-among us as a society and within us as individuals-sufficient capacity to provide the care that will be increasingly needed by our parents, our spouses, our loved ones? And will we find caregivers for ourselves, privileged as we are to live in a time when dying of chronic, degenerative disease is the norm? Cancer, heart and lung disease, and dementia-these are the main story lines in the last chapter of our lives. "Poet and teacher Frances H. Kakugawa answers these questions with an echoing, Yes! Breaking the Silence: A Caregiver's Voice is a book of enormous hope and transformation. In it we listen to women and men who have mined the vein of care that lies under the surface of our seemingly narcissistic society. They know that dying, illness, and caregiving are very hard work, and they have discovered that such work can be affirmed by keen observation, self-reflection, and creative written expression. The terrible reality of Alzheimer disease is a crucible where this wisdom is hard won, and Breaking the Silence shows how resilient Alzheimer caregivers quietly are and how far our system of long-term care still has yet to go in order to support both patients and caregivers in a decent and just way. "The texts in this book are poems, notes, journal entries, and brief commentaries by Kakugawa and five others who have been guided by her in a writing support group process. These texts are intimate, but not idiosyncratic. In them we find facets of a universal human significance-molded by the particular personality, culture, imagination, and sensibility of different individuals. This is a book about what fundamentally matters-the humanity of caring in the face of dependency and mortality, loss and change, holding on and letting go. This book does more than simply ask us to read; it calls us to reflect."

- Bruce Jennings Director of Bioethics Center for Humans and Nature New York, NY

'BREAKING THE SILENCE - A CAREGIVER'S VOICE' - 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