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Archive for the ‘Elder Care’ Category

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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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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Drop by and say hello…these are my Fall lecture events:

 

Sat., Sept. 20 at 1:30 pm

Basically Books

160 Kamehameha Ave., Hilo, Hawaii 96720

I will be on a panel with other authors to discuss memoir writing based on Writing the Hawai’i Memoir by Darien Gee

Contact:Christine Reed

808-961-0144, Fax: 808-935-1553

Toll-free: 1-800-903-6277

bbinfo@hawaiiantel.net

www.basicallybooks.com

 

Wed., Sept 24: Hilo Hawaii @ 5 p.m.

The Art of Caregiving…

Hilo Alzheimer’s Association

County Office of Aging: Kinoole St.
Contact: Chris Ridley: 808-443-7360
Mon., Tues., Sept 29 & 30: Honolulu HI

Hawaii Pacific Gerontological Society 18th Biennial Conference: Imagine 2030…Mobilizing

Our Communities Across Generations.

My session: The Future of Caregiving: Writing and Poetry to Preserve Our Humanity”

Hyatt Regency Waikiki Beach
Tues., Oct 7: Honolulu HI

Kapoho, Memoir of a Modern Pompeii

15 Craigside, 3:30pm

Contact: Cookie Nakai: cookie.nakai@15craigside.org

 

Fri., Oct 17: Leeza Gibbons radio Talk Show: Leeza’s Care Connection

Poetry and Caregiving

Time: 10 – 11 a.m.

 

Mon., Nov 17: San Mateo

Kimochi: 453 North San Mateo Dr

Time: 1 – 2:30

Title: I Am Somebody: Dignity in Caregiving

Contact: Liz Bissell (650-346-0849)

 

Tues. Nov 18: San Francisco

San Francisco Family Caregiver Alliance

1715 Buchanan St San Francisco

Title: I Am Somebody: The Art of Caregiving

Contact: Fumiko DiDomizio (425-931-2294) ex.127

 

 2015 ( Details to follow )
Maui

May:

Tri-Isle Resource Conservation and Development Council. Inc.
Kahului, Maui
Executive Dir: John Tomoso

November:

Maui County Office of Aging

 

 

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DearFrancesThe Hawai‘i Herald newspaper has a beautiful new website so now you can read my complete column online! Here is a condensed excerpt from this month’s column. For my complete reply, please read the column at the Hawai‘i Herald website. For my newest column every month, be sure to get your copy of the Hawaii Herald by subscribing. To visit my column archive on their site, click on my new “Dear Frances” logo to the right.

 

Dear Frances,

I’m not a caregiver, but will probably need one in my old age. Is there anything I can do now to not become a burden to my children or husband?

Helen
Kaua‘i

 

Dear Helen,

How wise of you to have such foresight. Yes, here are a few suggestions.

On Promises: Do not ask your family to make promises for the unknown future. Many caregivers live with remorse and guilt when their loved ones need to be placed outside of their own home because of promises made, such as: “Promise me you won’t put me in a nursing home.”

We cannot foresee the future. Oftentimes, nursing facilities become the only alternative due to the condition of your loved one. To leave your voice, saying you want to always remain at home may create additional grief and guilt for your family members. Why not lessen the trauma of putting you in a nursing facility by giving them permission to do whatever seems right and appropriate?

We need to be openly free and unafraid to discuss these possibilities before care is needed.

My mother and I had this conversation often in a very playful way. Yes, discuss this in casual conversations to ease the way into a subject that is a natural part of life.

Okasan: When I get old, just put me in a nursing home and you don’t need to visit me.

Me: Naah, I’ll take care of you at home. If you’re nice, I’ll give you nice warm baths. But if you get nasty, I’ll hose you down with cold water in the garage for your baths.

Laughter.

Yes, we teased and laughed a lot about her later years, but the message was clear: She gave me permission to put her in a nursing home, and when the time came for that placement, I recalled with gratitude, those conversations. And it was very OK for both of us.

On Funerals and Services: It relieves family and friends to know your wishes in advance. Do you want to be cremated? If you wish to have services, name the church of your choice. I know of people who have made all of their arrangements, right down to catering services. One creative woman had her own funeral services while she was still alive — it was a celebration of her life among family and friends.

On Advance Directives. If you have not made an advance directive, I strongly suggest that you get this done. An advance directive is a written statement about your future medical care. It is a gift to family members and friends so that they will not have to guess what you want if you can no longer speak for yourself.

These two websites can give you more information on health directives.

POLST — Physician’s Orders for Life-Sustaining Treatment — is a physician’s order that gives patients more control over their end-of-life care. It specifies the types of treatments that a patient wishes to receive towards the end of his or her life.

The Kōkua Mau website has the updated Hawai‘i POLST form that was amended during the 2014 legislative session.

A video on end-of-life care made by Kōkua Mau is also available on this site. My mother and I appear in it!

Here’s a little background story on the making of this video. The staff at my mother’s nursing facility was told that we were coming to do this video. When we arrived, the aides had painted my mother’s nails bright red and her face was made up like a woman of the streets. We had to scrub much of the makeup off and find alcohol to rub off her nail polish. They even had a tiara in her hair. They saw her as a movie star. I was deeply moved at what the ladies had done.

Take care,

Frances

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Here is an excerpt from my “Dear Frances…” column in the Hawaii Herald newspaper from last month. For my newest column every month, be sure to get your copy of the Hawaii Herald by subscribing.

Dear Frances,

I’m taking care of my mother, who has Alzheimer’s. My sister and brother live out of town and criticize many of the things I do when they come to visit. How can I get them to understand and help me out?

Sally
Honolulu

Dear Sally,

I find this common among many families, so I’m going to address this to out-of-town siblings: Become a pillar of support. This means, do not give advice to or judge the primary caregiver. Their job is all consuming and they are doing the best they can.

Unless you live with the person being cared for, you will not know what caregiving encompasses. Telephone conversations with loved ones reveal very little because of social graces. My mother had a standard conversation:

Okasan: “Hello . . .”
Caller: “Long time no see. How are you?”
Okasan: “Oh, I’m fine.”

This conversation did not give a clue as to where she was in the stages of the disease, nor the demands being made of the caregiver. Asking questions requiring very little memory tells us hardly anything about the state of their dementia. For example:

Caller: “Did you have breakfast?”
Loved one: “Yes.”
Caller: “How are you doing?”
Loved one: “Good.”
Caller: “What are you going to do today?”
Loved one: “Oh, not much.”

Do not judge so easily that the caregiver is exaggerating because the loved one sounds so normal on the telephone. To find out what’s really going on, spend a few weeks, or even months, with your loved one without the primary caregiver in the house. Find out for yourself by taking on the role of primary caregiver.

Before visiting, please check to see what dates are best for your loved one and his or her caregiver. There are schedules and appointments and unless you are able to take care of these, your visit needs to be coordinated with the caregiver — not made at your convenience. We need to respect the world created by the caregiver and the loved one.

If you are unable to become an active caregiver, there are many other ways you can help. Ask the caregiver about:

  • Finances: Contribute your share of expenses.
  • Household: Pay for someone to do house cleaning or to take care of the yard.
  • Carpentry: Work to make the house safe and Alzheimer’s-friendly.
  • Express and show gratitude: For example, give gift cards for restaurants, massages, manicures, etc.
  • Join a support group to learn about the disease and the demands it places on the caregiver so that you will have a better understanding of the situation. Educate yourself about the disease and its symptoms so that you will be able to converse on the same wavelength.

This is now addressed to you, the caregiver: Be honest when you are offered help. Asking for help does not mean that you are not the perfect caregiver. We often feel that others will not be able to give care like we do because of the structure and schedule we have established.

I often felt that it was too much of a bother to explain to someone else how to give care to my mother because she was so used to me. There are many ways of giving care, as long as no one is hurt or mistreated. When a sibling helps with caregiving, try to get out of the house; ideally, take a vacation when they’re visiting. Write out the schedule for your siblings to follow, as change will confuse the one being cared for. A list with the following information will help:

  • Physician’s name, office phone number (cell, if available) and address
  • Names and phone numbers of people who may have to be called upon in the event of a crisis (plumber, electrician, medical personnel, neighbors, friends, etc.)
  • Shower/bath time
  • Meal times
  • Outings
  • Favorite foods, TV shows, music and activities.

Both primary and out-of-town caregivers: Not everyone is cut out to be a caregiver, so be honest if you feel that you cannot handle the demands of being a caregiver and give help in other ways.

Aloha,
Frances

Dear Frances,

My husband was just diagnosed with Alzheimer’s. I’m at a loss, and I’m scared. I know there is so much mis-information. Where do I begin to obtain good information? What kinds of meds? How do I make our house Alzheimer’s friendly?

Roberta
Hilo

Dear Roberta,

Whoa! One day at a time. One need at a time. We need to progress with his needs as the disease follow its course; otherwise, we will be overwhelmed and frozen with stress.

To begin with, your husband’s neurologist is the best source for all of your medical questions.

For information: Put together a list of your concerns and visit the Alzheimer’s Association office in your community. They can direct you to the right resources. If you cannot get through the neighbor island numbers listed below, call the Honolulu office for information.

Hawai‘i Alzheimer’s Association Contact Numbers

Maui: (808) 242-8636
Hilo: (808) 981-2111
Kaua‘i: (808) 245-3200
O‘ahu: (808) 591-2771

The National Alzheimer’s Association contact number and website are: 1-800-272-3900, www.alz.org. Call them for help.

Another good source is the Eldercare Locator, which you can reach by calling 1-800-677-1116, or visiting www.eldercare.gov. Eldercare Locator helps families find resources and services in their own community (home care, adult day care and nursing homes). Eldercare Locator is a public service of the U.S. Department of Health and Human Services’ Administration on Aging.

If there are support groups in your area, consider joining one, for it is here that you will not feel alone. You will learn how others are resolving some of the same problems you are facing. When I joined a support group at the Alzheimer’s Association, there were caregivers with loved ones at all stages of the diseases. That gave me insight into what to expect on a general level. I say “general” because there are individual differences in how this disease affects each person. Caregivers are very creative and these support groups are filled with them.

Most of the Alzheimer’s Association offices have a library. Here are some book titles that may be helpful:

The local libraries probably have these books on their shelves, too.

Remember: Take a deep breath . . . one day at a time.

Aloha,
Frances

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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

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Check to: The Hawai’i Herald
P.O. Box 17430
Honolulu, HI 96817-0430

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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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