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Posts Tagged ‘Northern CA Alzheimer’s Association’

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Yes, please make a line twice around the block.

from: a shameless dreamer

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Yes, I am now a columnist for the Hawai’i Herald! Read the intro to the first column by Hawai’i Herald:

Hawai’i Herald Columnist

…With this issue of The Hawai’i Herald, we welcome author, poet, teacher and seminar speaker Frances Kakugawa to our ‘ohana of monthly columnists. ..
…Frances was in Hawai’i last month to deliver several talks on writing and caregiving — she spoke on Oahu and in Hilo. We got together on a Saturday for a won ton mein lunch and sealed the deal on her penning a monthly “Dear Frances” column, sharing her perspectives on caregiving issues sent in by you, our readers. You can email your “Dear Frances” questions to me at kchinen@thehawaiihochi.com — or mail them to me the Herald: 917 Kokea St., Hon., HI 96817. I will forward your questions to Frances for her to answer in future editions of the Herald.

Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa

 

The first question discussed :

Dear Frances,
I am a caregiver for my mother-in-law. I’m having a difficult time because she treated me badly before she got ill. She never accepted me. And now I’m her caregiver. How can I deal with these thoughts of resentment and give her the care she needs? I can’t forget what she did.
Jane

 

Dear Jane:
We, both caregiver and the one being cared for, bring our own personal history to caregiving. I am very familiar with your feelings. As difficult as it is, it may be time to let that part of history go. See if you can be in the present and embrace your mother-in-law as a woman who needs your care, not as that woman who left you residues of negative feelings.

She may have no recollections of what she did. If you can do this in the spirit of humanity, with compassion and respect for who she is, a fellow human being, you may discover like many of us did, that rising to the occasion with love, compassion and dignity will bring peace and appreciation.
This disease will run its course no matter how we feel or behave, so for our own benefit, why not the positive so that at the end, we’re able to say, “I feel good about myself. I am a good human being, after all,’’ which often leads to that undefineable joy, for whatever we do to others, we do to ourselves. The gift of self is a powerful gift. Let me know if this works for you. Frances
The other two questions discussed are:

Dear Frances: I finally found adult care for my wife, but she refuses to go. How can I get her out of the house?
Harry

 

Dear Frances,
My friend’s mother has Alzheimer’s. What can I do to help her?
Gary

If you’d like to follow my column, subscription to the Hawai’i Herald can be made at the following:

Hawai’i Herald

$48 a year
$85 domestic airmail
Check to: The Hawai’i Herald
P.O. Box 17430
Honolulu, HI 96817-0430

Name:
Address:
Phone:

Someday I will tell you the story of my dream of writing for a paper since grade school years and how I failed twice in my efforts in becoming one. And here, after all these years, the Hawai’I Herald is making that dream come true.

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Alzheimer’s Awareness Month:November

Once a month, a group of caregivers and I meet at the Sacramento Alz office as poet/caregivers.

We sit around a wooden rectangular table  to share our intimate lives through our pens. Often, we share the seasons from our garden: figs, strawberries, blueberries, plums,  apples,peaches, zucchini, zucchini, zucchini during the Summer and Autumn months.

Sometimes there is complete silence in the room, as though there is nobody there, sometimes belly laughs so loud, I close the door to keep our laughter in. There are poems that bring the Kleenix out, poems that receive nods, “yes, I know what you’re saying.” We become poets, admiring images, metaphors and the beauty of language. But most of all, we are caregivers, using poetry to pause, reflect and to make sense of our lives as caregivers,  and to discover the abundant gifts of humanity hidden beneath the everyday-ness of caregiving. We also create new words if need be. And we learn from each other, how to be the most compassionate and knowledgeable care givers, without being afraid of truth. And there is complete trust as we open the doors to find meaning in this relationship between caregiver and the ones being  cared for. We are no longer suffering caregivers but poet/caregivers, creating art from among the “ruins.”

Mary Swisher, caregiver for her husband shares two of her poems:

 

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.

 

     ©Mary Swisher Feb. 201

These are the days

I write bitter poems

These are the days

I scream

don’t cry, just

scream

hate the person I have become

wonder who I ever was

ever compassionate, understanding

full of joyous kisses

pranks and laughing fits

over some shared escapade

the person who wrote

love notes to tuck under his pillow

or his lunch sack.

Now I write angry words

That I hide, even from myself

I have become a liar, a plotter

mapping his days and mine to avoid

conflict…I agree when I don’t really,

I say “never mind” or “it’s not important.”

Explaining is like

my speaking Greek to a Greek,

I know so little Greek.

Everything becomes confusing

to the point where

I scream

NEVER MIND … FORGET IT!

and he says

FORGET WHAT?

      ©Mary Swisher

      October 2012

voices of other caregivers will be posted throughout November.

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The Book, it arrived. Stand in line, rush, cut in line, get your copy today.

This review is from: Breaking the Silence: A Caregiver’s Voice (Paperback)


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 knowledge of it, of what ravages it performs on the human brain. But I never had the slightest notion of what its tendrils do to those closest to the host. Ms. Kakugawa draws distinctly with her pen images from her own experience with her mother, then introduces us to several others who share with us their own raw, intimate experiences as caregivers for their own family members. I could scarcely say that I would have understood the behavior of someone so afflicted before reading Breaking the Silence. Now I understand the profoundly important need for both parties to retain their dignity in the face of such adversity.

The book’s true power comes from Kakugawa and her contributors as they divest themselves of 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

Order from Willow Valley Press:
http://www.btsilence.com/

Book Lovers Book Shop
http://www.bookloverscafe.com/

Amazon.com ( and other on-line sites)
http://www.amazon.com/Breaking-Silence-Caregivers-Frances-Kakugawa/dp/product-description/0976269775

Distribution in Hawaii courtesy of Landmark Publishing. Distribution in the USA by Willow Valley Press.

Scholarly review essay by Dr. Singh is here:

http://rksinghpoet.blogspot.com/2010/09/breaking-silence-tribute-to-sufferers.html

First delivery of book by Barry Schoenborn of Willow Valley Press


Peet’s Coffee & Tea in Sacramento (Mgr Tim) where I do all my writing.

Run…don’t walk.

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November is Alzheimer’s Month so I’ll be devoting my posts to Alzheimer’s disease, to the courageous men and women caregivers, and to the equally courageous ones being cared for. Nestled between will be a look at some of my own experiences as a caregiver.

The Curtain Rises & Falls

The menu said a lot at Mimi’s restaurant. I noticed a list of mini-sized entrees since my last visit. I also noticed tables being filled by the elderly. While deciding to go with a healthy salad or a cholesterol-filled shrimp entrée, I saw a woman come in with a walker, led by a daughter or a friend. The woman with the walker was dressed in a blouse with a blue scarf draped around her neck with matching blue slacks. Her hair was coiffed as my hair, minutes after a visit to the hairdresser.

I followed them with my eyes, watched the woman’s companion sit the woman gently in her chair, fold and lean her walker against the table. The woman sat without looking at the menu. Her companion ordered for both.

A giant-sized bruise began to spread inside of me and settled at the bottom of my stomach; that same unidentified dull ache that often accompanies quiet Sunday afternoons.

I thought of the numerous times I had played this same scenario with my mother. I, too, used to dress her in her Sunday best after her weekly visits to the hairdresser and we’d dine out in restaurants for lunch or dinner. I knew her favorites so ordered the same Japanese noodle dish or chicken sukiyaki. I ran the monologue.

What was not observable was the pain I felt as I tried to disguise both our lives in an environment that spelled Normal. Look at us, I showed off, two nicely dressed women, like everyone else, dining out. But I knew our lives were anything but normal.

I observe this same drama played over and over again each time I dine out, with under-studies playing my mother. And I am still there, holding the script, with numerous takes.

10-30-02

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A friend asked me once, “What will you do when you’re 88?” And this was my answer:

Becoming 88

I will have a love affair
That will leave me trembling
On a windless day.

I will drown in Puccini,
Mozart, Verdi,
Tidal waves roaring
Inside of me.

I will feel the brush strokes
Of Van Gogh,
Clawing, bleeding
My  inner flesh.

I will be Shakespeare
Vibrant on stage,
Rivers rushing, splashing
Over moss and stone.

I will become soft,
Sensuous, wet,
Against your skin,
Silk against steel.

When I am 88
I will still be woman.
Yes!

This past week, I heard stories from caregivers who took my poem beyond its art form into real life.

One caregiver told me, “My father died three years ago and my mother, who’s 88, has a boyfriend. On his 86th birthday, he bought a Porsche and they go riding a lot. She’s so happy and confided that they are connected in all aspects.” That must mean trembling leaves, right?

Another caregiver’s mother is in a nursing facility and believes one of the male residents is her husband so she holds his hand and is simply happy to be there with her husband. And they have become a twosome.

I hope to hear more beautiful stories from my readers.
As for me, I hope when I’m 88, someone will be out there so I can say, “Ah, I wrote about this once.”

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The Presence of my Mother

At the Santa Cruz Alzheimer’s Association  conference a few days ago ( read my last blog), I received many comments after my presentation. I had read a few poems about caring for my mother who had Alzheimer’s disease. A woman came up to me and said ” I heard your mother’s voice while you read your poems. I felt her in the room.” Some minutes later, another woman told me the same.

That’s incredible, isn’t it? Two women from California, knowing my mother’s voice and feeling her presence …to be so spiritually connected to someone they had never met or known since my mother  had lived in Hawaii her entire life?

That was very  comforting  and it made me smile and even chuckle. And I treasured that thought that she was there with me, laughing at some of her moments and events I had preserved  in poetry. There are so many days when I wish I could have one more day with her and I think I did.

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The Sea

I am the sea…
Mender of broken souls…

I file the edges of broken nails,
Torn and jagged by human toil.

I take the salt from human tears
And wash out grief and silent pain.

I flow the blood that has caked
Deep within each punctured wound.

I take the weary off their feet,
Freeing sand grains between toes.

Come, my child, and walk my shores…
I am Mender of broken souls.

Alzheimer’s Conference in Santa Cruz
( A Self-Proclaimed  Day of Fame)

I was invited to speak at the Alzheimer’s Association conference in Santa Cruz yesterday.

The Santa Cruz waves made me realize how much I miss the sea. There’s such a healing quality, watching  waves wash into shore, hearing the lapping of sea against jagged rocks and cliffs. So many of my  poems written in Hawaii held sea images and I’m sharing one with you.

The conference room was like a large dance hall with  rows of lights, spider-webbing the ceiling and walls. . . perfect ambience for slow dancing or a debutante’s ball.  When I arrived I was told the local community TV Channel would be taping my talk.

I was greeted by Francie Newfield, a way younger Meryl Streep.  She was assigned my personal hostess for the day. “May I call you my body guard?” I  asked her. “This is my one chance of telling my friends back home,  I am sooo famous in Santa Cruz, I was assigned a body guard.” She protected me from all the fans eager to purchase my book.This is where fantasy ends.

A few minutes before my body guard introduced me, I saw the woman working her TV camera and I heard her mutter, ” The lighting’s so bad in here, her face is full of shadows. This is bad.”  What? I went up to her and whispered, “Oh, no, you can’t make me look ugly, now.” She looked at me and asked, “Are you Frances? Oh, I thought that woman up there was you.” She gave me a good look and comfortingly said, ‘It won’t be a problem. Just stand up tall up there.” I guess my face is flat and I don’t cast shadows.

The audience was wonderful and receptive with laughter and tears. My poetry and comments centered ,as always, on retaining human dignity in our loved ones and in ourselves because whatever we do to others, we do to ourselves.

We spent the last twenty minutes writing. I could have heard a pin drop as they wrote, all 200 plus participants.

One man touched my heart with his poem, “I want to turn the clock back five years. Five years, to do it over again. ..”

A young lady thanked me for busting free, all those thoughts and feelings deemed taboo, in caregivers.

The artist in caregivers,  understood how poetry allows us to turn a disease as devastating as Alzheimers’, into beautiful art form.

But it was Richard, the maintenance man who tugged the last string of my heart. The PA system was turned on the entire floor, in adjoining rooms and in the bathrooms. So if you were in the bathroom during my presentation, you would have heard my poetry on the john.

Richard told me he heard my talk while working on the floor and thanked me for my pig pen story. “I like how you put yourself together at the pig pen. That was good.” So Richard, I’ll keep telling that story.

I often wish I had a magic wand to let caregivers  see what awaits them at the end of their journeys. The most  incredible transformation of ourselves as human beings and the deep and loving relationships that develop between caregivers  and their loved ones. But this is one journey that can’t be fast-forwarded.

And that was my day. Thank you so much, Dale Thielges and staff, for a meaningful and fulfilling day. To Francie  Newfield, for  body-guarding the “famous.” And to all the beautiful people at the conference, my heart is with you.

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