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Posts Tagged ‘Poetry and Caregiving’

Hi Everyone,

I’ll be speaking at the National Council of Negro Women Alzheimer’s workshop on Nov 18th.

I’ll be addressing how I used poetry, language and story telling to help me turn the care of my mother into a legacy of dignity and compassion, and to know what it means to be human.

nov18

 

 

 

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From Hawaii:
Wayne Harada, columnist for Star*Advertiser, posted this review of my newest book, “Breaking the Silence: A Caregiver’s Voice. This is followed by reader Red Slider’s comment. Both men expressed my efforts beyond my own.

Book review: Tips on surviving caregiving
June 5th, 2011
By Wayne Harada
Columnist: Star/Advertiser

Caregiving for a beloved elder or an ailing kin or friend is no picnic.
It’s hard work — and a two-way street, for both the caregiver and the recipient of the
care and attention — and help is on the way.

“Breaking the Silence: A Caregiver’s Voice” (Willow Valley Press), the latest book by Frances H. Kakugawa, is “the” book to ease you through the process. Kakugawa, an award-winning former Islander, speaks with the voice of experience, fueled by her passion of writing poetry and honed with the skills of a school teacher, her one-time profession. She also cared for her dying mom — the catalyst for her to help fellow caregivers in the tough process.
Now a resident of Sacramento, Calif., Kakugawa has been visiting Hawaii this month to present workshops and give talks, on her experiences in dealing with caregiving, notably with loved ones who also have Alzheimer’s Disease.

She’s also on the book promotion trail — and her volume is inspirational and instructional, insightful and inventive, and surely should be a talisman for anyone involving in or eventually will be a caregiver.
OK, you can’t wear a book like a good-luck charm, but if you have this within easy reach, you’ll get by the good days and the bad days of caregiving. There’s so much wisdom and wonder here.

In what is both a confessional (Kakugawa cared for her mom, till she passed on) and a manual (you can learn how to express your thoughts by putting pen to paper), she brings light where there was darkness, hope where there was chaos, and assessment where there was confusion — not only through her personal experiences, but with the kindness and support of caregiving individuals and caregiving groups.
As they shared, she learned; as they discovered courage, she found empathy — a bonding of two communities, one helping the other.
Her bottom line: You cannot do it alone, and a day of frustration and defeat will ultimately bring a glimmer of compassion and understanding in the journey of sharing and caring.

In plain talk, she tackles tough topics with candor and honesty; with her roots in education and her livelihood as a poet and wordsmith, the book absorbs and addresses the paths and journaling of others who shared the experience of dementia and determination — folks like Red Slider, Kakugawa’s companion in Sacramento, who was caring for his mom when she entered his life. He also has helped her nurture her writings and her life as an inspirational speaker.

Other brave and proud caregivers who share their stories, about dealing with their respective moms — Jason Y. Kimura, Eugenie Mitchell, Linda McCall Nagata and Elaine Okazaki — and they reveal there are textures and gradations on how to handle the chores, deal with the grief and move on … enlightened and enriched.

Their vignettes, and of course Kakugawa’s, will touch the gamut of emotions — laughter, tears, recollection, reward. All part of life, all real, all individual.
In a word, “Breaking the Silence” is golden. And a treasure, especially for those in the initial phases of facing caregiving.

1. red slider:
June 6th, 2011 at 1:25 am

Wayne, Thank you so much for your understanding of the importance and humanity of Frances’ work. You couldn’t have gotten any closer to its true meaning than when you wrote, “‘Breaking the Silence’ is golden.” ‘Silence’ is, indeed, the most formidable challenge any every family caregiver will ever face.

I’ll tell you a little story about Frances. My first contact with her came in the midst of my long ordeal caring for Isobel (my mother) and from a shear accident of my own curiosity. I am a poet and writer, by trade, and I’d written a couple of poems about my caregiving experience. So, it was natural for me to wonder if anyone else related caregiving and poetry as I did. On a lark, I googled the terms ‘caregiving’ and ‘poetry’. At that time, only a single entry came back; Frances’ Kakugawa’s “Mosaic Moon”. I bought a copy and read it at once. It so inspired me, and encouraged me to keep writing about my experience, that I sent a note of thank you via Frances’ publisher.

A few weeks later I got a wonderful email back from Frances and the two of us began corresponding. As time went on, caregiving became more and more difficult for me. Though I tried to conceal this fact in my correspondence, I think Frances sensed that I was approaching the point of having to throw in the towel, despite the fact that I’d promised Isobel I would care for her at home. Sleep deprived and in ill-health myself, the task was becoming impossible.

Almost at the end of my rope, Frances appeared at my door on some pretext about having a book-signing in California or something. She took one look at me, sent me to bed and took charge of Isobel’s care until I had fully recovered and was able to return to caring for Isobel.

Not only had Frances made it possible for me to fulfill my promise to Isobel, but the she and my mother formed a wonderful relationship and bond. From then until Isobel’s death a few years later, I believe Isobel’s last few years were fuller and more rewarding than I could have ever provided alone. The rest, as they say, is history.

I can say, the day Frances appeared at my door was the first time I believed that there might actually be life after caregiving.

What I learned, from Frances is that caregivers are not only confronted with the diminishing ability of their loved ones to speak and express themselves, but are thrown into a world of silence themselves as their old friends visit less and less often; their nights-out to enjoy the sounds of conversation and laughter of others become fewer and fewer, and their contact with the world is reduced to exchanges on the medical condition of their loved one and terms like ‘respite’ and ‘hospice’ and ‘septicemia’. After a few years, caregivers often find themselves confined to a world as silent as the growing silence of their loved one. This takes a toll on caregivers, greater even than the physical demands of the job, which are hard enough.

The tools which Frances, through her books and workshops, made available to me were much more than a few valuable how-to’s to help make me a more efficient and effective at being a caregiver. Writing and expression are at the heart of what caregiver’s need to do if they are to keep themselves healthy and in the world, even as their loved ones recede from it.

To reach for one’s feelings and thoughts and self-presence during the experience, I learned, is as important as reaching for medications and Depends and doing visits to doctors and applying wound-care bandages and making day-care appointments.

To keep expressing oneself is the ‘golden means’ that Frances has been providing for her readers and audiences and members of her support groups for many years. Caregivers who retreat into the silences that surround them are ever in danger (as I was) that they, as well as those they care for, will become casualties of this cruelest of all diseases – Alzheimer’s, the thief of life.

“Breaking the Silence” and her earlier work, “Mosaic Moon” not only have something of value to offer to everyone who reads them – about life and the dignity of life – but something very special for caregivers who not only read her work, but find themselves inspired to pick up pen and paper and give voice to their own experiences, whether through journals or stories or poems or simply jotted thoughts. For them, the answer to the question, “Is their life after caregiving?” will almost certainly be a resounding, “Yes!”

best to you, and many thanx for the review of this important work – red

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We sat around the table, caregivers, with pens in hand, ready to
weaken that Alzheimer’s thief. And we did.

A Daughter’s Lament
(the labor of becoming our own mother)

It’s as if the overcast day has
Blown this unknown Niobe of tears
Into our midst.

Silently she rains down her
Salty drops until it puddles at her youthful feet.

The first daughter tells her sorrow … “I left my mother
In “that” home, my sister hates me, it breaks my heart.”

Our Niobe gives an audible sob and we can feel her
Tears lap at our ankles.

The second daughter speaks “My husband can no longer drive
He could get lost … and he knows it.”

More tears, enough to put a monsoon to shame, and yet …

Another daughter has gone to work, left her mother-child
At day-care.

The deluge continue, tissues mound into a white mountain now
We are sitting in a sacred lake.

Another daughter: “My brilliant husband can’t walk…on the floor
I can’t … too heavy and my mom needs more and there’s no money…”
She reads a poem, crying, out of breath.

By now we have become a Greek chorus
Buoyed on salty swells of tears.

Our new daughter speaks
Amid gasping sobs, she cries, a desperate howl
For the mother she has lost, but still holds,
And will not let go.

By Mary Swisher, caregiver

***

A Poet/Caregiver’s Perfect World

Imagine this:
A perfect world
Where grief and sadness
Are obsolete as
Yesterday’s fashion.

Imagine this:
A world so perfect,
The tears shed
Are over  first daffodils,
A twelve year old’s voice,
“I floated on air, being with you.”
She walks out clutching poems of love
Written about her Grandpa.
Imagine a world so perfect,
Daughters shed tears for beauty and love
That leave them wordless for their
Significance.  Beauty and Love
And nothing else.

No, I can’t imagine
A world so perfect.
Otherwise, where
Will the poets go?

by Frances Kakugawa

( I facilitate a Writing Support Group for Caregivers in Sacramento, sponsored by the Alzheimer’s Association. Call Alz Assoc for info: 916-930-9080)

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