'Breaking The Silence' - Reviewer Index:

[click name to read full review]

• Patricia Lanoie Blanchette, MD, MPH. , Professor of Geriatric Medicine, John A. Burns School of Medicine
  

"...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.

• J. W. Nicklaus, author , "The Light, The Dark, and Ember Between"
  

...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."

• Cullen T. Hayashida, Ph.D., Director , Kupuna Education Center, Kapiolani Community College
  

"Breaking the Silence: A Caregiver's Voice is a powerful literary contribution and teaching tool to the field of gerontology."

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

"Breaking the Silence: A Caregiver's Voice is a book of enormous hope and transformation...."

• Carolyn Pang, M.D.

"Frances is a true pioneer and her books, including "Breaking The Silence", provide us a precious and rare signpost for making "the future better...."

• Charles Pelligreno, author , "Last Train To Hiroshima"

"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...."

• Red Slider, poet and contributor, "Breaking The Silence"

"...there is another type of reader to whom the book may be of equal or greater value. For those who will someday have to face the question, "Do I even want to be a caregiver?", reading this book is the best way I know of to come to grips with anything resembling an honest answer."

 

Patricia Blanchette, University of Hawaii, Medical School --

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. Nicklaus, author --

"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 of "The Light, The Dark, and Ember Between"

The Kapuna Education Center Director writes: --

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

Carolyn Pang, M.D. --

Too often in the Alzheimer's literature the voices heard are those of the "experts": doctors, researchers, etc. For the most part caregivers have had no voice. Yet anyone involved with Alzheimer's patients will agree that the job of caregiver is arguably the most relentlessly demanding, tiring and spiritually draining on Earth today.

Frances Kakugawa is changing this. In her book, Mosaic Moon, she explored (by living it) the use of poetry support groups in enabling caregivers to find the divine, and even the joy and growth, to be found in caring for their loved ones.

Now, in A Caregiver's Voice, as a "post-caregiver", with moe experience with more groups,she continues the journey, reflecting on the ways in which her unique poetry groups help to clarify, examine and eventually change the trials of caregiving into spiritual growth, understanding and compassion in seeing the person still living beneath the shell of Alzheimer's disease.

We need this. There are far too few avenues of true help for caregivers now, and we will need to find the best ways to assist them in the future, when by all accounts Alzheimer's disease will continue to increase.

What better way than by actually elevating the experience? Frances is a true pioneer and her books, including "Breaking The Silence", provide us a precious and rare signpost for making the future better.

- Carolyn Pang, M.D.

Charles Pelligreno, author of "Last Train To Hiroshima" --

"I was never a fan of poetry; but when I opened Frances Kakugawa's earlier book, Mosaic Moon, and turned randomly to three or four pages, I was drawn in immediately. Here, in poetry and anecdotes written with five of her fellow caregivers, Frances once again draws the reader in - with sometimes spellbinding honesty, sorrows, and even humor. An old friend and mentor once told me that truly emotionally powerful writing is born only through isolation and great pain. My friend's own great writing seemed to have arisen from being a young man isolated by polio during the London blitz. When my father was fighting a cancer that threatened to move into his brain, he died suddenly one night from heart failure. My friend and teacher comforted me with the words, 'Charlie! That's how I want to go.' My teacher was then at the beginning of his own battle against Alzheimers-like symptoms. He was glad that my father would never know the path on which he was embarking.

These writers know that path - all of it. However, a reader no more needs to have actually known Alzheimer's in his family than to have lived through the sinking of the Titanic to appreciate Walter Lord, or studied the stars and designed spacecraft to learn from Arthur C. Clarke.

Among the stand-outs in this book are, 'Symphony of Truth'... 'A Dream'... 'Lesson #2'... 'Option Three'... 'Isogaba Maware'... 'Chocolates for Doris'... 'A Reading Specialist'... 'Nightbook #2'... 'The Ink and the Fury'...

"These are among the nuggets - the truly golden nuggets of insight - you will encounter, and remember."

- Charles Pellegrino
Author: The Last Train from Hiroshima

Red Slider, Poet & contributor to this volume -

"Breaking The Silence" is of great value to caregivers and those who support them, either as friends or professionals. I'd give it 5-stars just for that. However, there is another type of reader to whom the book may be of equal or greater value. For those who will someday have to face the question, "Do I even want to be a caregiver?", reading this book is the best way I know of to come to grips with anything resembling an honest answer. To most of us, caregiving a loved one with Alzheimer's or dementia might seem the natural thing to do, the right thing to do. But caregiving is not for everyone. It will test the patience and endurance, even the sanity of many of us. There are other options, and the choice of whether to take on the job should always be a conscious one, made after careful consideration of the question, "Should I even be a caregiver? Am I able to bear up to the ordeal of taking on this responsibility?" "Breaking The Silence" is a remarkable addition to the knowledge one must have to consider such questions; to have some way of knowing what is really being asked of them. Few give much thought beforehand to the matter. When the time comes, most of us, like the contributors to this book, are completely taken by surprise. But, when it happens, when we see our spouse or parent unable to read a newspaper or cook a meal or find their way home, that is exactly what we must decide, "Are we cut out to handle what is being asked of us?" Caring for a loved one with dementia makes demands that will test body and soul beyond anything most of us can imagine.

For those readers, then, "Breaking The Silence" may be the most important book they ever read. There really is no better way to begin to understand just what it is that 'caregiving' really demands - psychologically and emotionally as well as physically. This book is truly breaking the silence about the uncompromising nature and the trials of caregiving. The relentless grind of watching a loved one, close up and personal, have their minds peeled away layer by layer is nearly impossible to describe. But that is exactly what Frances and the contributors to this volume have succeeded in doing.

No, BTS, is not a great literary work and you won't find the tidy, well-chosen and polished writing you might otherwise expect in works of poetry and literature. Caregiving is a messy and confusing undertaking. Much of the writing in the book was done while its authors were in the midst of taking care of their loved ones. What the work might lack in the 'niceties' of writing it more than makes up for in authenticity. To her credit, Ms. Kakugawa deliberately chose to do very little editing of the contributors words. Her light hand bears the mark of a mature and competent editor who knows when to leave something as it is, despite any literary failings it might have. Caregiving is a coarse and imprecise endeavor. Any real account of what caregiving looks like from the inside cannot avoid, if it is to authentically describe that reality, bearing the marks of the haste and muddle, often despair, that goes with the job.

There simply is no other way to get at the feeling of what it is to spend years of your life in the company of someone who's mind is unpeeling like the layers of an onion. That feeling, the inside of the experience of caregiving, is where "Breaking the Silence" has its greatest triumph.

For those who may someday have to decide for themselves whether to care for a loved one or leave it to someone else to to take care of the matter, it is the feeling of what caregiving is about that is of real importance. "Breaking The Silence" provides exactly the kind of knowledge that is required before anyone can honestly say "Yes." to such an undertaking. There simply is no way to get that information other than by listening to those who have already been there and know, first hand, what it means to be a caregiver. We can be grateful to Frances Kakugawa for not only offering us a glimpse of her personal journey into caregiving; but for having assembled such an extraordinary group of caregivers willing to provide us with what we will need to know before we can authentically says "Yes." to such an awesome task. The caregivers in her book have, indeed, chosen to 'break the silence'.

- Red Slider
Poet and contributor to "Breaking The Silence - A Caregiver's Voice

'Breaking The Silence' - Excerpts:

i tiptoe softly
in the silence of the house
how loud her absence

"A few days before her death, my mother told Rev. Bruce Nakamura, a Buddhist minister, "Please don't let me be forgotten...The physical task of caring for her ended with her death, but all other aspects of caregiving and her life go on.

Will lightening strike me down
Before my first thoughts find life?
      How many mornings have I slipped
      Groggily into her room, standing watching,
      A mother over a crib...."
Frances K.

"I had visualized her last moment, her funeral arrangements, all rationally stored in my head, but nothing prepared me for her death. I still want a replay of that scene so I can do it right, with my hand in hers, because it didn't happen that way."

"It is a time for solitude
La Boheme, the blues.
It is, above everything else,
A hell of a time...."


"Last night, my mother died again.
This time, the tears
Eroded and washed down walls
Until there was nothing left,
But remnants of my grief...."
Frances K.

Nora often spoke of wanting to be free as a bird. "When I'm stuck in traffic, I used to tell my husband, 'I wish I could be a bird so I can just fly over all the cars and be on time for my appointment.' I told my husband to release colorful pigeons at the end of my funeral service but he said it's too much of a problem."

..."We do not worry about the back of the vase.
Ikebana is placed against the wall.
Only front matters."...

  ... After Pearl Harbor, Hiroshima?
     Yes, smile, be nice?
     Only front matters?
Frances K.

"I don't like to write because my father used to sit me down and read his journal to me. He did this when I did something improper or wrong. I just hated to sit and listen to him."

Option Three:

I will go to South Carolina
Where prisons cater to Alzheimer's inmates,
Those lifers have aged without parole.
I'll rob a bank in that city,
Be housed forever in their Alzheimer's section
With murderers, rapists, and terrorists,
All without memory.

Frances K.

How to care for our elderly involves issues beyond affordable physical structures for them. At first glance, this seems plausible and uncomplicated. In actuality, it quickly becomes complicated because removing loved ones from a familiar envionment, away from family and friends and placing them into a new lifestyle....

And so it finally begins:

"May 9 - The week before...oxygen...."

June 17 Father's Day: "There has been a crises every week. Medicare issues...."

The week before...tracheotomy...."
The week before...let her die...."
The week before...intubation...."
The week before...replace internist...."
The week before...medications and supplies...."
The week before...how to be a caregiver...."
The week before...conferences...."
The week before...she wanted to die...."
The week before...oxygen...."
The week before...hospital personal...."
The week before...ventilator...attorney...."
The week before...intensive care...."

The latest crisis...."

"And so it finally begins: my mother's descent to her final day. It happened on March 10th, my mother's stroke. It was unexpected only from a narrow viewpoint. The week before it happened she received oxygen in her home. We didn't expect the stroke, but her decline was becoming....The stroke was an unforeseen detail...."
- Jason Kimura

Boxes of chocolate covered Mac nuts.
So simple a gift...


As Alzheimer's steals her away.
Instead, I offer boxes of chocolates.


- Linda McCall Nagata.

Alzheimer's leaves me tilting at windmills.
Nothing to be done. No plan to follow.
No hope. No cure.
I am powerless.
I turn in my badge.


- Linda McCall Nagata

 

...not the day her knees buckled
the wild sounds in moan
or bone beat on thunderdrum.
No one was on hand to introduce
the slump thing in the wheelchair,
with an RSVP that was never sent.
Forgive us for barging in this way.
Forgive us for being late, as usual,
our insubordination, our guiless moon.
There, where there is matted grass,
Our bewildered bare feet went.


- Red Slider

They stare, they move, they moisten and dialate as one hand leaves fingerprints on the carmelated sweet potatoes and the other drops the spoon gripped loosely in the funnel of a closed fist. Even the large wet question laced across the iris disolves in its own insufficiency and the fingers give up their clutching at useless stones. They yield to the weight of a limp hand dragging them through the spaghetti sauce and onto her lap. I am just recovering the spoon when I look up to see her eyes like those of some bewildered Kong.

...I am peeled back as her eyes move side-to-side studying my face as though it were a landscape. I avert my own eyes until I can stand it no longer. I look at the eyes that look directly at mine looking at her. I have nothing to say. I drop the spoon....

But the secret of that spring,
so many springs ago, is caught in the crease
on the blue page with the little yellow flowers,
worn through from too many years of renewal...


For a moment, recognition catches
in her throat. Then, voiceless,
The parchment shudders....erasing.
- Red slider