Posts Tagged ‘Caregiving’

08-2018_Caregiving A dignifed LifeDrop by to say hello if you’re near the library.


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Hi Everyone,
Here is an hour long interview I had with Micheal Pope,  CEO of ASEB (Alz Services of East Bay) this morning on aging and giving care. I read poetry from Ageless Woman and I Am somebody. Micheal is an amazing woman who devotes her life to helping others.
I don’t know how I did…I just about never listen or watch anything I say or do on radio or TV.
Take care,


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My blog site is included on this site for people who are caring for loved ones with various illnesses . Please go to this site for the entire sets of blogs from various caregivers.


My own is listed below.

20 Valuable Blogs for Caregivers in 2018

Caregiving for a Loved One, Young or Old, Is an Incredibly Difficult Job. These Bloggers Share Their Wisdom, Helping Any Caregiver on Their Journey

Frances Kakugawa

Frances Kakugawa is a distinguished author and poet, whose experience in caring for her late mother, Matsue – who lived with Alzheimer’s – influences much of her work. 16 years after her mother passed away, Frances remains an active voice in caregiving, and has published four books on the subject – including one for children. She writes a Dear Frances advice column for caregivers in the Hawaii Herald, and her long-standing blog has a vast amount of posts about caregiving, ranging from practical advice to profound poetry.



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New Year. Traditionally,  it is a  time for hope and renewal. I’m going to take a different path here and return to the past. Sometimes, there are life-changing events that need to be revisited again and again. These are the parts of history that would do us best if they became part of our present and the future.   I know each of us hold many such events in our lives. Here are mine:

I’m 18 years old, a freshman at the University of Hawaii, now Hilo Campus. I’m living with a Haole family as a live-in maid, working for my room and board. The transition from Kapoho is earth shattering as I  shift from chopsticks to place settings of  numerous forks and spoons.

What I missed most during these years was rice. The standard sandwich in my new household was made with mayonnaise, lettuce and peanut butter. But for some miracle at Hilo campus,   I had rice balls and okazu for lunch every day for the next 1 1/2 years.   Ella, also a freshman,  must have observed and sensed my drool as I watched her enjoy  her rice ball lunch as I bit into my Haole sandwich. So she brought me a home-made lunch of rice balls and okazu for the next 1 1/2 years before we transferred to Manoa Campus.  She made this lunch for me every day.

(Later when I transferred to Manoa Campus, I ate baloney sandwiches for 15 cents, the most I could afford.   So do not feed me baloney or peanut butter and mayo sandwiches because just thinking of them brings a dull ache to  my gut.)

I knew then, that I would take that daily rice ball and someday return this gesture of such kindness and generosity to someone who needed it as much as I did during those years. Opportunities were in abundance.

I once opened a savings account for a very musically gifted Vietnamese student who was living a life that seemed so hopeless. On his graduation from high school, I cashed in that account for his future plans.

I have observed him from afar as he passed on that rice ball. Once, he invited me to play my flute with him in Waikiki during the holiday season.

“We’ll leave a hat to make money,” I told him. “We can have a good Christmas dinner together.” He laughed and said, “Frances, I was thinking of giving that money to the hungry.”

So that rice ball continues to make a difference in other people’s lives. Last year I fulfilled my mother’s wish. I grew up hearing her voice wishfully saying, “If  I get  rich someday, I want to give a scholarship to someone at Pahoa School.” Last year a student received the first Matsue Kakugawa $1,000 Scholarship.

It doesn’t always need to cost a penny.  There are so many volunteers making a difference in nursing facilities, churches, at the Alzheimer’s Association and other non-profit organizations. During the holidays, I had the privilege of observing an act of pure human kindness.

In a supermarket aisle, a woman who reminded me of a grandmother in a kitchen, baking cookies, snarled at me, “Watch it!” when my cart got close to hers. Dumbfounded, I quickly gave her space.

In line at the post office, I heard a voice in a menacing tone growled to an elderly man, “You’re standing too close to me. People like you shouldn’t be allowed in public.”The closer we got to Christmas, the more distance we seem to need from each other.

At a furniture store, the sales people had their radar turned on full. They swooped in succession. Did they smell cash in my pocket? I shouldn’t have worn my leather coat.  “Thank you, I’m just looking,” I repeated, and walked toward their room displays.

The door opened and another customer entered. I smelled his presence before I turned to look at him. The salesman was on the man in an instant. “May I help you?”

I heard the man reply, “I just want a place to sit.”

I looked twice at him. He didn’t look like cash to me. He was unshaven with that sallow and gaunt look.  His dripping wet thin coat hung loosely around him. He looked like a refugee from Loaves and Fishes ( a refuge for the homeless)  who was out of his realm.

I braced myself for the confrontation that I knew was about to come and prepared to run defense for the man. The salesman looked the man over and then gestured to a collection of pricey sofas.

“Be my guest,” he said softly”. Then as an afterthought, “Just be careful not to wet the furniture.” He walked away. I didn’t buy anything that visit. But you can be sure, when there is cash, I’ll be back to the same store and that salesman.

There is such a need for these acts of human kindness more today than ever before. Some of the best come from complete strangers.

When I first moved to Sacramento 14 years ago, I walked around Arden Fair Mall every morning. I had no friends, except for Red, felt very alone on these walks, often thinking, “What am I doing here.”

Then one morning I ran into the Challenge Butter delivery driver, parking his delivery truck near the mall. He greeted me like an old friend. He was a handsome  young man and we used to chat on those mornings and I felt joy and not so alone. I felt I had found my first friend in Sacramento. We never did exchange names. This ended when I joined the gym.

This morning after gym, I walked over to LaBou Coffee Shop for my morning coffee when I saw the Challenge truck parked outside the parking lot. I told the driver: “Now you’re the smart one by parking on the street. Others park in the lot, blocking cars.”

He said, “Thank you, I know how those guys park.”

As he walked into the restaurant with his delivery cart, I realized he was that same young man of 14 years ago, older now. I asked him if he were delivering at the mall 14 years ago and he said he has been doing this for 23 years. I told him of what he had meant to me; that I had just moved here and never forgot his kindness. He was moved and thanked me. I wrote and sent a copy of this story to his bosses. I hope he not only got a raise but his kindness will be part of the entire personnel at Challenge Butter.

As with every experience in life, there is too, the other side of the coin. For anyone whose past memories are not as pleasant and worth preserving, unlike Ella’s rice ball,  would it be possible to take a negative memory and recreate it into a more meaningful memory to benefit our well-being and those of others?

To caregivers, you may not know it or feel it, but you belong to that very select group of people who live the humanities day after day. In your busy life, you may not know the impact you are making . There is no medal or special ceremony at the end of each day, but know that your acts of compassion and human kindness are being appreciated, observed and learned, and are being passed on to our children and to all who come in contact with you.

What better gift to leave to our future generations than a legacy of knowing what it takes to be a kind human being, and you are all of this and more.

So as another year appears before us, thank you, everyone, for your support and for all the emails and feedback. There is so much wisdom out there, please share yours with us. May our new year bring more dignity, compassion and countless acts of human kindness.  Happy New Year.

By tradition, the Emperor writes haiku for each new year.  I’m no Emperor but here is my haiku to  greet the new year.


bamboo pic haiku



This article first appeared in my Dear Frances column in the Hawaii Herald.



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I will be in Hawaii during May and June and in West Covina, CA in July. I hope you’ll drop by to say hello. I’ll also be introducing my new book I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving.
This is my schedule:

Hilo HI
The Gift and Legacy of Caregiving
Time: 5-6
Site: Aging and Disability Resource Center
1055 Kinoole St, Hilo, HI
Contact: Chris Ridley: 808-443-7360
Sponsor: Alzheimer’s Assoc.

May 23
Maui HI
The Art of Caregiving
Time: 9-11 a.m.
Site: Hale Mahaolu Elima Community Hall
11 Mahaolu St. Kahalui, Maui
Contact: Lynsey Capone: 808-242-8636
Sponsors: Alzheimer’s Assoc

May 30,2015
Hilo HI
Book signing
1:30-2:30 pm
Site: Basically Books
160 Kamehameha Avenue
Ph: (808) 961-0144

July 18
West Covina, CA

Keiro Health Conference
The Art of Caregiving
Time: 8:30- 4:00 (all day conference)
Site: East San Gabriel Valley Japanese Comm. Center
1203 W. Puente Ave
West Covina, CA 91790
Contact: Kanako Fukuyama: (213) 873-5709 direct

To Caregivers: Do check my monthly Dear Frances advice column for caregivers in the Hawaii Herald.

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Yes, please make a line twice around the block.

from: a shameless dreamer

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11-2014-Art-of-Caregiving-MMy marketing manager at my publisher’s office says she wants to apologize for working on my event calendar before having coffee. The wrong date for my Modesto workshop was posted on my web calendar for a few days. (Thank you to Alison H. for calling this to our attention!)

The correct date is Wednesday, November 12. The session will be held at the Alzheimer/Dementia Support Center in Modesto, California (700 McHenry Avenue, Suite B). I will be sharing tips on caregiving and how writing can help you on your caregiving journey (even if you’ve never written anything longer than a grocery list). Check-in and refreshments start at 10am. Lecture begins at 10:30, followed by resources and book signing at noon. To register, please call 209.577.0018. Respite will be available.

This event is presented by the Alzheimer’s Association and co-sponsored by the Alzheimer/Dementia Support Center. Refreshments provided by The Stratford at Beyer Park.

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On my Soapbox to Two Men  Caregivers

“Never ever take care of an Alzheimer’s patient. Institutionalize them for your own sanity.”

“You don’t do anyone favors by keeping them home. You’re forgotten the minute you walk out of the nursing home.”

I’m shouting through a megaphone on a soap box after reading the above comments from two men on giving care to loved ones with Alzheimer’s disease. I’ll try to remain calm.

1.Some sons (and daughters) are not meant to become caregivers.

2. No, they don’t remember but they deserve dignity, compassion and love from us because this is what it means to be human. Being human doesn’t end because one has no memory or speech or whose bodily functions have been eliminated.

3. Better said than done, it may seem,  but as  a caregiver for my mother the daily discoveries on how to be the best possible caregiver brought many answers not yet found in medical offices. I couldn’t change the physical and medical aspects of this disease, but I could change my attitude and this dictated to me, what caregiving was going to be about. Never, you say? There are as many circles to caregiving as there are families. Never or Always denies the individuality of each situation.

4. Above everything else that goes on in caregiving, we must preserve human dignity because whatever we do to others, we do to ourselves.

Some of my discoveries:

There are two normal worlds, mine and hers. I entered her world instead of trying to bring her into mine because the disease doesn’t allow this. So when she said, “My sister was here,” and in my world,  her sister  has been gone for years, I entered her world and asked,”Did you have a good visit?” And she shared her hallucinations with me. We flowed together, she and I, in her normal world. I often brought her into mine when we went to restaurants or walked or wheeled the mall or sat at the beach.

Yes, the constant repetitions do hit many nerves. In her world, she was asking it for the first time so I entered her world and answered each repetitive question as though it were being asked for the first time.

I also embraced the new person who was evolving before me and I learned to love this new person, perhaps more than the one before Alzheimer’s because of the care she needed and of who we were before Alzheimer’s. The changes in our roles transformed our relationship,  and had I  held on to the former, it would have evoked  helplessness and negative human emotions.

Words. Words make such a difference. They create attitudes and attitudes become part of how we perceive caregiving. To call any of her behavior  abnormal creates frustration. To call that exact behavior as her attempt to retain her own dignity brings compassion. Words.

To those  two men, I’ll put my megaphone down after I repeat my Emily Dickinson  poem, the poem written when I asked myself one day,  if my mother  could speak, what would she say?

Emily Dickinson, I Am Somebody 
If I could speak, this is what 
My voice would say: 
Do not let this thief scare you away. 
Do not let this thief intimidate you 
Into thinking I am no longer here. 
When you see me, tell me quickly who you are. 
Do not ask me, “Do you know me?” 
Help me retain my own dignity by not forcing me 
To say, “No, I don’t know who you are.” 
Save my face by greeting me with your name 
Even if the thief has stolen all that from me. 
It shames me to such indignities to know 
I do not know you. Help me 
In this game of pretension that the thief 
Has not stolen your name from me. 
My words have all forsaken me, 
My thoughts are all gone. But do not 
Let this thief forsake you from me. 
Speak to me for I am still here. 
I understand hugs and smiles and loving kindness. 
When I soil my clothing or do something absurd, 
Do not ask me “Why didn’t you?” 
If I could, I would. 
I know I have turned into a monstrous baby, 
If I could, I would not allow this thief 
To let you live and see what he 
Has stolen from me. 
I know my repeated questions 
Are like a record player gone bad, 
But my words are gone and this is  
The only way I know to make contact 
With you. It is my sole way of saying, 
Yes, I know you are here. This thief has stolen 
Everything else except for these questions 
And soon they, too, will be stolen away. 
I am still here 
Help me remain a human being 
In this shell of a woman I have become. 
In my world of silence, I am still here. 
Oh, I am still here. 

Gloria Steinem recently said that changing the way we think about masculinity is one of feminism’s great remaining challenges. After decades of feminism, she said, “we know that women can do what men can do… But we don’t know that men can do what women can do.” And that needs to change, because “it’s really important that kids grow up knowing that men can be as loving and nurturing as women can.”

I’m reacting to those two men alone  tonight because I know many men caregivers who are as compassionate, caring and capable as women. These men obliterate gender. I hope these caregivers, along with women caregivers,   will add their stories to this post so we can  reassure Gloria Steinem that what she suggested has been happening for decades. And more importantly, we  reach those caregivers whose voices echo those two men above.

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A Caregiver’s Workshop over Apple Martini


After spending all morning at the AARP conference, friend  Elaine and  I went to the Pineapple Room at Macy’s for lunch. Fortunately, as it turned out, there were no tables but the bar was open.


I love sitting on bar stools; it makes me feel wicked. I ordered an Apple Martini ( the best in town) and  a salad. Soon a man sat next to me. He noticed the leis around my shoulder and asked if I were celebrating a birthday. “No,” I explained, “I just gave a lecture at the AARP conference.”


And now the most unique “pick up” began, not by one but by two. Since I’m no longer 25, this is the best I can expect in this game of “pick up.”


Our conversation led to his story of his wife struggling with caring for her father with dementia.

I sensed all the loopholes so began a mini-workshop. A woman next to him leaned over and said, “I didn’t mean to eavesdrop but I’m caring for my sister who has Alzheimer’s.”


So over my Apple Martini, I gave a condensed version of what I had covered earliar at the conference. They took my business card and hope to read my books on caregiving. The stranger said, as we left, “This was meant to happen. Thank you. ”  Yeah, but he didn’t pay for my drink.


Elaine said, “This is way better than sitting at a table in a restaurant. This would never have happened outside of a bar.” Elaine paid for my martini lunch.





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The Bus is Coming

Did you hear that great story the other day (NPR) about a care home in Dusseldorf?

Older, dementia patients were always running away, trying to get back to their old homes, or wanting to get downtown, or just wandering away on “journeys”.

One day, one of the residents came to the office and said, “Give them a bus stop.”

When the staff stopped laughing and thought about it, that’s what they did. They built an authentic bus stop in front of the main entrance.

Residents who wanted to run away or wander would simply go to the bus stop and wait for a bus. Of course there were no buses. But after awhile
the resident would forget what they were waiting for, or get hungry, or think of something else to do, and wander back into the home.

It worked like a charm. Staff even found it useful to say to someone who was getting homesick, “Let’s go out and wait for a bus to take you home.” They would do that, and then the person would calm down and the home-sickness would pass. Then they’d go inside and move on. Just like that.

(We don’t need a bus stop to do this. When a person with dementia says, “I want to go home,” why not say, “Okay, let’s go get your handbag and sweater” and go for a nice walk. Or when loved ones say, “My mother came to visit me,” instead of turning to our own world, stay there with her and say, “That is so nice. Did you have a good visit?” She may have fascinating stories to tell you.

We preserve their dignity by not insulting them with “Your mother has been dead for 20 years.”

Last week, I was part of a panel at the Alzheimer’s annual conference, discussing caregiving in Asian communities. A question was asked: How do I get my mother to take her medication when she simply refuses?

I took a deep breath before taking the mike because a minister was also on the panel . It was time for my Thou Shalt Lie.

“Lie a lot,” I said. “My mother respected doctors so I told her, “The doctor wants you to take this medicine so you don’t need to go into the hospital.” And she did.

When she wondered why I was sending her to adult day care, I told her, “The doctor said you need to go to this exercise place . If you don’t go, you might end up in the hospital.” She attended day care 5/7 without complaint. My lie led her to activities in a social environment.

It wasn’t a lie, really. Trying to stay in my own rational world would have been more of a lie to her . As with those residents in Germany, that bus stop entered their world of existence. To not do this, would have been the bigger lie.

We look at each individual and enter his or her world of dementia with their truth, not ours. One caregiver told her mother she was going to school because mother was a former teacher. Another caregiver told her dad, he was going to work. Both happily attended adult day care. Interestingly, there was one day in the week when I didn’t need to get my mother into her world and that was to the hairdresser’s. She understood “hairdresser’s” because we both carry the same genes of Vanity.

The following is lifted from my most recent book: Breaking the Silence: A Caregiver’s Voice.

“Many Alzheimer patients return to babbling in later stages of the disease. These next two poems pose the question, “Have we thought that maybe, we are the ones with language deficiency?” Perhaps if we learned to see through their eyes and hear through their ears, we will learn more of their world instead of being stuck in our own. This may lead us to find a way to caregive with less conflict.”


Babbling …
sounds without words
a soliloquy on stage
her eyes on fire
her head nodding with passion
periods commas disappear her babbling
Continues chuckles laughter …
We speak our French, Italian,
English and even Japanese,
but no one, no one
has taught us Babblelese.
Why so much laughter in Babblelese?
Are all her secrets being released
Riding the winds on whose wings they fly?
Babblelese –
Language reserved
For the precious few.


Another misdiagnosis: Hey Doc,
She ain’t got no language/perception
Decay, she’s merely turning into a poet,
A literary jewel of metaphors,
A perceiver of images unseen
By passers-by, medical tests and research.
Ah, Doc,
Blessed are the poets
Born daily into our lives.


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