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Archive for the ‘Alzheimer’s Disease’ Category

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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Thank you, participants and Brookdale Foundation and RAPP for all the welcoming mats. It was an honor to  help open the conference with a keynote address  followed by book signings and two workshops on the following day. It was a nice way to introduce my new book: Dangerous Women: Poetry for the Ageless. Participants are to be highly commended for making a difference in the lives of our elders, our children and in the humanities.

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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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