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Archive for the ‘Alzheimer’s Disease’ Category

A Salute to Patrick at Punchbowl Cemetery

(A Military Burial)

 

The soldiers stood cemented to the grassy ground

Like statues, while Buddhist sutras filled the air.

Movement would dishonor the man who once stood

In his uniform, like his comrades today.

 

The three – gun salute, the wailing taps,

The precision of the folding of the flag,

A salute purified by white gloves

For the presentation of the symbolic flag.

 

Each step of ultimate precision, a tribute to dignity,

Honor and respect for the fallen soldier,

From the country whom he had served

With love, dignity and honor.

 

Whatever Alzheimer’s had stolen from him,

All was returned to him today.

Whatever memories, forgotten,

The country that he loved, remembered.

 

A final rest in peace.

 

Frances H. Kakugawa

This is what a country should do  to people who have served her.

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This is lifted from my Dear Frances advice column for caregivers which appears monthly in the Hawai’i Herald.

 

Dear Readers,

Today I honor the children. Too often we isolate our elders from the children when they are no longer able to speak or recognize people. I’ve compiled the writings of several children who remind us of how sensitive and caring, and aware they are of their elders. We have so much to learn from them.

 

First meet Maxwell Shukuyu, the grandson of Mary Swisher, who is a member of my poetry writing support group for caregivers in Sacramento. Max spends most of his days and nights at his grandparents’ home.He is a natural with his grandpa. He will easily divert his grandpa’s attention away from behavior caused by the disease by inviting him to sing with him as he plays the piano or violin. He laughs along with his grandpa and just goes with flow with him. Here’s what Max wrote about his grandpa.

 

 

The King of the Ice Cream

My grandpa is a smart man. He likes to say, “I went to Washington University in St. Louis—it’s in the top three medical schools in the country.” I’ve heard this phrase, this proud declaration, more than once—in fact, I’ve heard this phrase and others countless times, but my grandpa isn’t an egotist.

 

Another favorite is, “You know, there are parasites in all fish. Mary (his wife and my grandma), don’t you remember coming to that lecture?” And she’ll say, “No, Bob. I think you’re mixed up. Now, eat your fish.” Or, my personal favorite, “Did you know I’m the King of the ice cream. If you want ice cream from the freezer, you come to me first!” he’ll say while grinding his teeth.

 

They’re more than routine catchphrases; my grandfather’s axioms are ingrained into the very fibers of his mind. But old age is a testament to mortality—the unshakable can fade and identity is fleeting.

 

But my grandpa is still my grandpa. He knows his name, knows my name, and knows my grandma’s name. He still peruses the house like a power-Nazi, removing offensive high-wattage bulbs and turning off unnecessary lights. And when asked what the proper name for a heart attack is, myocardial infarction is usually on the tip of his tongue. But, at the same time, there’s a disconnect. It’s like his brain’s “VACANCY” sign is half-lit. He’ll grope for the powdered sugar and sincerely ask, “Is this the syrup?” He’ll tell me—twice in fifteen minutes—about how he evaded his fraternity’s hell-week by hiding in his basement. He’ll come to me asking, “How do I use my phone’s voice-dial?” And I’ll go through the steps, and he’ll thank me. And the next week he’ll say, “How do I use my phone’s voice-dial?” And he’ll thank me again.

 

It’s true—I don’t know a lot about death, aging, or mortality. I’m 18. Of course, there was my paternal grandfather’s death, which I was too young to understand or fully remember. And, of course, there are acquaintances—old family friends—that passed. But my dog Beethoven’s death is the closest I’ve been to loss. I can remember regretting that I hadn’t taken more photos with him and how hard it was to let go. Otherwise, I’ve been rather fortunate in that death is a fairly foreign concept. And, in terms of aging, my experiences have been limited to observations. But watching my grandpa as he aimlessly walks around the house humming the tune to “The Java Jive,” has given me some insight. Denial, delusion, avoiding the truth—it isn’t necessarily harmful.

 

Maybe, in the depths of his mind, my grandpa realizes how much he’s changed. But, honestly, I hope he doesn’t. There’s some quote floating around on the internet that says, “Worrying is like a rocking chair. It gives you something to do, but it gets you nowhere.” In his present state of ignorant bliss, my grandpa still smiles, sings, dances, jokes, and laughs. Why take that away from him? I can’t see how emphatically breaking the news in some dramatic family meeting or constantly reminding him would be beneficial. I don’t think anyone should live the last few years of their life identifying as “someone with dementia” or “someone with Alzheimer’s.”

 

Is this lie by omission immoral? Maybe. But life isn’t short. The last couple of years of anyone’s life—as 21st century medicine progresses and desperately tries to squeeze out and extend everyone’s last few drops of existence—aren’t pretty. Life often ends uglily with a painful slog to the backdoor. Why make it any worse?

 

Maxwell Shukuya

Age 18

Sacramento

 

The following poem was written by a sixth-grader who attended one of my poetry workshops.

 

“Oh no,” the sixth grader said as he put his head down on the poem he had written. “Miss Kakugawa, I’m going to be punished for this. Oh no, look what I wrote. I called my grandmother stale bread!”

 

I read his poem and said, “This is a very beautiful poem, your images are very powerful. ”

“Really?” he asked, taking a deep breath.

Once students are told their poems are wonderful, they see and accept the true nature of their art.

 

My Grandmother

 

My grandmother is like

A stale piece of bread.

I feel sorry for her

Now that she’s almost dead.

 

As she limps down the dark road,

She looks wrinkled and so old.

I wish my grandma was young again,

Like a freshly baked loaf of bread.

 

Geoffry Waggoner

11 years old

Hawai’i

 

The following poem was written by another 11-year-old. Note his awareness of his human environment.

 

Old Man

 

Old man of the town

Wrinkles all over his skin

He sits all alone.

 

Justin, 11 years old

Hawai’i

 

 

Every Saturday I took my mother to Kahala Mall to have her hair done. One day, while wheeling her through the mall, we passed a group of teenage boys. One boy stopped and looked at us. I heard him say to his friends, “Wow, you guys, just look at that. That is so beautiful. When I get kids someday, I hope they will take care of me like that.” They stood in silence and watched me push my mother through the mall. I was glad we were out in public just at the right time and place. I was glad isolation had not become my mother’s world. Perhaps, even in her dementia state, she had taught a young man something about compassion.

 

And here’s my Poet Wordsworth from Wordsworth Dances the Waltz. He continues to make a difference in people’s lives.

 

After introducing Wordsworth to the audience in my keynote address at a health conference recently, a young caregiver came to me.

“You just made me realize,” she said, “how I need to listen to my young children. They keep telling me that I talk mean to Grandma. I didn’t realize this until I heard your poems from your Wordsworth book.”

 

“Your children are Wordsworth,” I said. “You are a good mother to be raising such sensitive and loving children. Listen to them, sometimes they see more than we do.

 

I want to close this month’s column by inviting you to join me at my table at a bakery where the window looks out on the world.

 

Make Me Cry, World

 

I sit at my favorite table in my coffee shop cave,

A cup of coffee in one hand, a pen in the other.

My scenic view, the parking lot.

Each space occupied under the trees, the first choice

for drivers in this three digit heat.

 

Soon there is movement. A woman with a walker,

osteoporosis humped on her back, snails her way

toward a sedan. A young woman, her granddaughter I presume,

opens both doors, the passenger’s front and back and waits.

And waits.

 

The woman knows her dance. She turns her walker around, two steps from the door,

inches her way, backside toward the seat, pauses and offers both arms to her granddaughter.

Both dance the familiar dance. Granddaughter gently and gingerly removes

the jacket off her back. The dance ends with sleeves carefully

pulled and tugged off both arms.

 

They share a smile before the walker is stored in the back

and grandmother is on the front seat in a light flowered cotton blouse.

Seatbelt is snapped and the engine turns.

Images of a time long past enters my cave…

a time when my mother and I once danced the same dance.

 

Tears roll down my face, not for the dance now finished and gone,

but for the kindness and smiles shared between the elderly and the young

and knowing, this dance being danced somewhere,

Again and again…

 

 

©frances kakugawa

( Hawai’i Herald: subscription: call 808-845-2255)

 

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group at mary's

A group of us from my Sacramento Poetry Writing support group for caregivers met for a holiday/oldies sing-a-long at caregiver Mary’s home yesterday. Yes, that’s me on the only available male lap of Bob.

raj's mother

Raj, thank you for bringing your mom. She reminded us about the beauty of dignity that still resides in our loved ones.

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I have borrowed the title of this post from Dianne Kujubu Belli, who is the Chief Administrative Officer of Keiro. This was the title of a blog post she wrote about what I had to say at the recent Genki Conference: Caregiver’s Edition where I was a speaker.

In her blog, Dianne says:

…one of the most profound lessons learned at the Conference was something that keynote speaker, Frances Kakugawa,  related about “entering the world” of the care recipient.  Bob DeMarco of the Alzheimer’s Reading Room calls this parallel world, “Alzheimer’s World.”

…Frances’ advice at the Caregiver’s Conference and Bob’s advice on his website is to enter Alzheimer’s World.  Do not try to correct your mother (or dad or spouse); she may feel angry and discounted.  When you accept that your mother is living in her own reality in Alzheimer’s World, you will accept her reality and you will feel less frustration.  She cannot change her reality, but you can change your own definition of reality.  You will be treating your mother and her reality with dignity.

To find out why Dianne picked the title “Take Me to Rodger Young Auditorium (Although I have Alzheimer’s),” please read Dianne’s complete post on the Keiro GenkiWoman blog. I am glad to hear that my speech resonated with the attendees at the conference and that Dianne continues to promote what I wanted to convey.

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Thank you, Keiro Healthy Community, and the East San Gabriel Japanese Community Center. It was an honor to give the keynote address at your Caregiver’s Edition conference last Saturday in West Covina. To all who attended, your attendance and personal comments came home with me. Thank you, too, for purchasing my books. It’s an author’s dream to be faced with a line of people with books in hand, signing for two whole hours. It’s not easy to be humble after being treated with such graciousness and kindness.

Keiro book linekeiro

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This essay and poem were previously published in The Hawaii Herald, and it recently appeared on the Keiro Genki Woman blog. I will be speaking at their upcoming Genki Conference: Caregiver’s Edition on Saturday, July 18, 2015 at East San Gabriel Valley Japanese Community Center.

Look closely, you may be one of these people who’s turning the caregivers’ world into a community of humanitarians. These are the people who help to make the caregivers’ world less and less isolated. These are the people who enter the caregivers’ world with acts of kindness. These are the people who live the humanities, not for the purpose of thickening resumés or for making points with one’s conscience. These are the young who do the right thing, not because it’s part of a school project or for college entrance essays. These are the people  who have become the altruistic neighbor or stranger.

A friend from Maui spent six months in Seattle with her husband who needed to receive treatment at a cancer center.  When she returned, her lawn and pasture land behind her house were mowed and clean. Her house looked as though she had returned to an open house. Her neighbors had silently risen to the occasion.

Years ago, my niece and her husband from Hilo were in Seattle for his bone marrow transplant.   Fellow workers from Okahara & Associates, on Oahu and in Hilo and Kona donated their vacation time so my niece could have paid leave to be with her husband. When she returned home alone, her co-workers cooked meals to help out since her girls were 4 and 8 years old. It was, she said, these acts of kindness that helped her after her husband’s death.

These stories are boundless.

Linda, a caregiver, had this to share:

“On my way home after taking Mom to the doctor, we stopped at Peet’s Coffee for Mom’s favorite cookies and coffee.  It was becoming increasingly difficult to get her in and out of the car so when we got back to the car I had to put down my wallet and shopping bag to maneuver her back into the passenger seat.  I then picked up my shopping bag, put it in the back seat, and drove Mom to her residence.

When I arrived home, I didn’t have my wallet.  I called the doctor’s office, Peet’s,  and the staff at Mom’s residence, thinking I might have left it in one of those places, but no, my wallet was gone.

So I resigned myself to cancelling my credit cards and applying for a new driver’s license.  Then someone knocked at the front door.  Before me stood a young man, probably high school age, with his bicycle and backpack.  He asked, “Are you Linda Donahue?”

When I said yes, he handed me my wallet, saying he had found it on the freeway overpass as he was bicycling.  Everything was in it, including almost $80.  He had ridden two miles out of his way to return it to me.

I suspect I left it on the roof of the car and forgot about it after helping Mom into her seat.”

These acts of kindness are possible because they were received with grace. Once we attach obligation to these gifts, we turn each act of humanity into one of indebtedness, destroying the gift in the spirit in which it was given.

Red was a caregiver for his mother for more than ten years.

“During these ten years, my lawn was always mowed,” he said. “Until today I don’t know who did this and it’s not important for me to know, nor is it important for that person to be thanked. We both know why my lawn was mowed.”

Thus the practice of “Pay it forward,” when we repay these gifts of  kindness to others instead of  to the initial benefactor.

And when we do this, the feeling of sheer joy about oneself is immeasurable. Sometimes, all it takes is to leave the door to your kitchen unlocked.

The Kitchen

Fanny’s kitchen was always open
to grubby little me who, in want of a pepsi
always knew where to go.

too shy for social etiquette,
I sat on her porch
waiting to be seen.

soon her voice, “Oh, Hideko,
I neva see you. So hot today,
you want some pepsi?”

my nod took me
into the  kitchen where she poured
warm pepsi into a white porcelain coffee cup.

she could have used crystal,
it would have been carefully held
between my hands, as I  sipped and felt

warm pepsi  flow down my parched throat.
there was no ice in our village, no electricity
or supermarkets. deprivation was  bliss.

looking back, I hear the dialogue
between Fanny and her children:
“ma, what happened to the can of pepsi?”

“oh, that Kakugawa girl was here again
so I gave it to her.”
“oh man, she always here, drinking our pepsi.”

when I became a caregiver
for my mother with Alzheimer’s,
I sought Fanny’s kitchen once again.

she was gone then, and we were
all scattered, after Pele’s red hot fingers
snaked their  way over our village.

oh, how I needed a pepsi drink
living half in fear in the eerie world
called Alzheimer’s.

using that Kapoho girl savvy
I found solace in Jane’s  home.
a Fanny in every aspect.

her door unlocked for my visits,
I went straight into her kitchen, declaring
“I need a mother,”

and sat myself down at her kitchen table.
“I dropped my mother at adult care
and I’m tired and hungry.”

that brought Jane to her feet. brewed decaf coffee,
lunch or breakfast, pending time of  my visit,
dessert and more decaf while I kept one eye on the clock.

there is something so comforting to hear,
“eat, eat. you look too thin.”

once again I hear the conversation at the end of Jane’s day,
“don’t we have leftovers for dinner? “
“oh, Fran was here today.”

it was a place where I sat to gather,
a self that was being gnawed away, too,
by that relentless Alzheimer’s thief.

Jane died last week and I grieve
for the kitchen she offered me, no matter what time of day,
a mother when my own was slowly taking leave.

there’s  a kitchen here in Sacramento
since my move ten years ago, a kitchen with another
name, but the same kitchen as long ago.

Mary’s kitchen is where I now sit,
when my need for a mother,  or a friend
creeps up on me.

I sit and sip freshly brewed coffee,
or hot green tea with healthy snacks,
vegan-made by Mary’s hands.

a sense of peace falls over me,
watching squirrels run up oak trees,
and patches of sky in morning glory vines.

I honor all three women this quiet day,
for their  kitchen without lock, and warm Pepsi
to soothe a parched life.

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I will be making my first visit to offer a caregiving workshop session on Maui next month. For those of you on Maui (or with family or friends there who could use some insight), please consider attending. Thank you to Lynsey and the Maui chapter of the Alzheimers Association for inviting me.

May 23, 2015 |  9am to 11am
Hale Mahaolu Elima Community Hall | 11 Mahaolu St. Kahului, Maui
(Please park in unnumbered stalls or outside of the housing facility along the road.)
For more information call Lynsey 242-8636 or Kathleen 871-5804

Refreshments provided for attendees
Open to the public. No reservation required.

FrancesMAY23

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