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This is the introduction to my April 2016 “Dear Frances” column in The Hawaii Herald.

Dear Readers,

I received the following letter from Dr. Christian Serdahl, a physician in Sacramento. He was responding to my Feb. 5 column in The Hawai‘i Herald titled “Support Group Angels.” In it, I questioned the lack of good medical care for our elders. His letter arrived a day after he read my column.

Dr. Serdahl is the first physician to ask me, “What exactly do you say to caregivers to bring compassion into their care?” He sat in his examination room and listened to every word I said. I felt like I had preempted his busy schedule, which I actually had done. Dr. Serdahl has no computers in his examination rooms, choosing, instead, to communicate directly with his patients. “My computers are in another room,” he said. His letter explained why.

For Dr. Serdahl’s letter, as well as several poems I’ve written about some of my medical experiences, go to The Hawaii Herald website. My column for them runs at the beginning of each month in the paper, and stays posted on their website.

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IMAG1943_1Thank you, Kevin Kawamoto of the University of Hawaii, and The Hawaii Herald for the following review of my newly released book, I Am Somebody, from Watermark Publishing. My monthly “Dear Frances” advice column for caregivers appears in The Hawaii Herald. This issue is about Alzheimer’s and Caregiving and I addressed making mistakes in caregiving. My next column focuses on holidays and caregiving. Enjoy…

One of the first poems that appears in Frances Kakugawa’s latest book from Watermark Publishing, “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving,” is succinctly titled, “SOS!” The narrator in that poem pleads: “I am shipwrecked / On this Isle of Caregivers / Send Help!”

The next stanza reads: “A bottle, sealed with wax / Washes up to shore. Inside / A pen and sheets of blank paper.”

And so begins a literary journey into the hearts, minds and souls of caregivers whose form of expression in this book are poetry and the occasional short essay. Including Kakugawa, 12 poet-caregivers share poems or essays they wrote about caring for a loved one with Alzheimer’s disease. Readers, especially caregivers, are likely to nod in understanding as the words unfold on each page, revealing a wide array of emotions and experiences.

“I Am Somebody” is a spiritually nourishing book that is also likely to be healing for people who lack the words to describe their caregiving experiences, both past and present, and the range of emotions that accompany those experiences. All of the poet-caregivers — Linda Donahue, Frances Kakugawa, Jason Kimura, Rod Matsumoto, Jody Mishan, Eugenie Mitchell, Linda Nagata, Elaine Okazaki, Bob Oyafuso, Red Slider, Mary Swisher, Setsuko Yoshida — offer an assortment of gifts and treasures to the readers of this book in the form of heartfelt poetry and prose.

One day years ago, they sat down with a pen and blank pieces of paper and responded to the encouragement to, “Write, write, write!” That was the answer to their “SOS!” Something amazing happened. Writing was their lifeline, and “I Am Somebody” is their enduring testament to the healing power of writing and words.

Read the entire review on the Hawaii Herald website.

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

Dear Frances,

I’m a caregiver for my wife. She hallucinates that there’s always someone in the bathroom with her when I’m giving her a bath. She said she doesn’t want to be naked in front of other people. This is a constant argument during bath time.

Bob
Sacramento, Calif.

Dear Bob,

These hallucinations are real to her, so deal with them as if they exist instead of saying that no one is there. This may only lead to arguments and frustrations, and we are not respecting her world. Enter her world, which is as normal to her as our own world is to us.

Try this: Open the door of the bathroom and speak to her hallucinations and ask them to leave. Tell them your wife wants privacy, so leave! Use body language and lead them out of the room. Ask your wife, “Did I get everyone out?“ Then close the door.

A minister told me this story. When he visited his father in Japan, he found him cowering in bed, saying the room was filled with tanuki (badger dogs). So the son rolled up some newspaper and went around the room, chasing the imaginary tanuki out of the room. The room was filled with them, so he leapt around and hit the walls and talked to the tanuki, telling them to leave the room. Finally, his father said in Japanese, “Good, good, they’re all gone now.” And then son and father had a good visit.

When my mother said something black was coming out of a painting on her wall, I took the painting down and stored it away.

Elaine Okazaki shared a poem in Breaking the Silence about how she handled her mother’s hallucination. This is an excerpt from her poem, “Humph, I Say.”

. . . Then there’s the night she woke up screaming.
She shouted about that girl and that man in bed with her.
“Where’s the man?” I stammer.
“Next to me, Can’t you see?”
“And where’s the girl?”
“Can’t you see? Against the wall.”
“Well, I say, ‘Let the man sleep against the wall.’
And put the girl next to you.”
“Oh, okay,” she utters.
Back to bed I go.
Humph! Humph! . . .

As you can see, Bob, what may seem bizarre to us, is quite normal in the minds of our loved ones. If we learn to see through their eyes and hear through their ears, perhaps we will learn more of their world instead of being stuck in ours. This may lead us to live in peace with less conflict between caregiver and the ones being cared for.

Aloha,
Frances

Here is the other question I answered in my May column.

Dear Frances,

Will I revert to speaking Japanese when I’m older? I came from Japan 33 years ago and my son is concerned that I will speak Japanese when I get old, and since he speaks only English, he’s worried that he won’t be able to communicate with me and won’t be able to help me. What shall I tell him?

Yoko
Sacramento, Calif.

For my answer, purchase a back issue of the Hawaii Herald through their office.

And here a nice letter that the Herald printed in response to the debut of my column:

Dear Frances:

What a wonderful opportunity for you, to reach out to the community and help resolve issues, or at least minimally reduce pain and angst in these times of the elderly living longer and needing love, care and attention.

Cheers for your new role of “Dear Frances” for the often forgotten folks who dutifully provide love and attention and get little reward of kōkua in their challenging journey.

You are the Band-Aid for this generation, helping to fill the gap. Kudos to you and to The Hawai‘i Herald for focusing on a very real need in a very solitary world of coping and caring.

You have my respect and aloha. And I send you good cheer, knowing you will share and send your compassion for those who need it most. The caregiver, of course; it’s hard work with no pay. They are unsung heroes and you are providing savvy advice for a community that needs it.

Wayne Harada
Honolulu, Hawaii

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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:
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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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  Mr. Kevin Kawamoto wrote a very generous review of WORDSWORTH DANCES THE WALTZ, in their special Alzheimer’s issue in the Hawaii Herald. Thank you, Mr. Kawamoto & Hawaii Herald! (Psst, Hawaii readers:  if you want a coupon code for 40% off when you buy books from Watermark Publishing, do get a copy of the Herald!) I’ll   be in Hawaii in March to speak at  various events. I’ll sign your books then.
Look, I am in the Hawaii Herald newspaper! Mr. Kevin Kawamoto wrote a very nice article about my book, WORDSWORTH DANCES THE WALTZ, in their special Alzheimer's issue. Thank you, Mr. Kawamoto & Hawaii Herald! (Psst: if you want a coupon code for 40% off when you buy books from @[71673657848:274:Watermark Publishing], go get a copy of the Herald!)

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