Caregivers’ Conference: Gardena, CA

To residents in the Gardena, CA area, I’ll be giving the main address at:

Genki Conference: Caregivers’ Edition on June 8th, Saturday in Gardena.  This will be followed by a writing workshop. Please check the site below for registration and details.  IF you’re unable to get to the site, please get in touch with me. Attendance is free with Bento lunch included.

 

Genki Conference Flyer GVBC 6.13. revised. pdf.pdf

 

 

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Haiku Caregivers

caregivers capture

the ah-ness of a deep breath

a haiku moment

There is a magical process occurring among the caregivers in our poetry support group as I write this.

Who would have thought a few minutes devoted to haiku writing would have turned into a haiku marathon. Within hours, emails  arrived with haiku poems  written by my caregivers. I am possessive here since they belong to my poetry support group.

Their  haiku poems which appear below, show what happens when a simple form of poetry is put into the hands of caregivers, post and present, whose minds have no locks. Just as they have taken every aspect of  caregiving with diligence, bravery and  love, they  have taken their pens to still another level of being artfully human. Caregiver Julia Couzens  insightfully called this  new adventure,  “the art of distilling the now.” Ah Basho, Shiki, Buson, are you smiling as you see how this art form has added still another dimension to caregiving: A haiku pause that takes only 17 syllables; a very affordable pause, time-wise,  in their busy lives, a pause that often takes them to other places.Here are a few from their incredible spirit…

          Caring for Papa

          Also working remotely

          It must be Friday

michelle

The door squeaks softly

 A sound “anybody there?”

 Morning has started.

                  penny

 On lap, poodle sleeps

 Head pillowed on typing arm

 Small “woof.” Email sent.

                   judy

At the computer

Haiku written and erased

Now, this one is done.

judy

 

         sealed she in glass

         decisions print inked  black

         spring “spectations damped

genie

 

Oh great banyan tree

With arms outstretched far and wide

In warm aloha.

diane

 

 

Find the yellow piece.

A gnarled hand responds slowly

And finds the right spot.

diane.

 

The lone turkey hen

Limps slowly, trying to follow

Her feathered family.

mary

 

 staring at computer

 groping for words of haiku

birds frolic in trees.

julia

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Poet Caregivers

Conversations with Caregivers

Please join these conversations on the power of poetry for caregivers. The first site begins with:

“I told myself, I don’t care how ugly and hard caregiving can be. It’s okay because I’m writing these poems. It’s the process of giving life to something versus the process of dying.” ~ Frances H. Kakugawa 

 

 http://jamarattigan.com/2013/03/08/friday-feast-caregiving-through-poetry/#comment-21725

 

This second site presents  a  radio interview by Fannie Cohen of  NY on how caregiving takes us to a higher level when we become poet/caregivers…..Go to Looks Like You Made It

https://itunes.apple.com/us/podcast/doing-it/id605177565

I am surrounded by individuals who know what it means to  be human and work at preserving that humanity.

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A Caregiver’s Holiday

Really?

Take a few hours off, take a day off, take a week off, you caregivers need to take care of yourselves. When we, who are or have been caregivers  hear this , we know these words  are spoken by non-caregivers. It is  simpler said than done to suddenly step out of the 24/7 caregiving life. Caregiving , because it involves us at the emotional, psychological, physical and social levels,  is not a job one can close a door to  at the end of a day. It is a way of life and there are just too many doors without locks. So what can we do?

I recently exchanged the following emails with Diane, a caregiver from Sacramento who went to Hawaii for a week of vacation.

Dear Frances, I’m here in Hawaii and looking at all the beautiful trees. I’ll send you a picture. In the meantime,
my mom is back in the hospital and my sister Bonnie is there taking care of her. I’m trying hard not to let it spoil my vacation.

Aloha, Diane.

Dear Diane,

I’m going to be your mother’s voice : Yes, enjoy your Hawaii. Nothing would please me more than to have you enjoy your vacation. I’ll be fine. If I’m not fine, that’s all right, too. As you enjoy your Hawaii, I’m putting my hands together in gratitude to you for being that very loving daughter. Whether you’re here or not, it doesn’t matter because your love for me is  with me. And you know, just as I know, we don’t need to say it anymore. Whatever we need,  we already had before I got ill.

I’m in the hospital not because you went on a trip, it would have happened anyway. So enjoy Hawaii for me, too.

Dear Frances, Thank you so much for this wonderful message from my mother. It is just what she would have said.] I cried when I read it. You are an angel.

Love, Diane

Yes, words can keep the river flowing  or  put boulders into our midst. Sometimes, we need to give ourselves the right message, even if we know it came from our own pen.

One Christmas Day, I went to a football game while my brother cared for my mother. Throughout the game,  I felt guilty for having such a free and fun  time at the stadium.

When my mother was placed in a nursing facility, that same guilt became a constant companion until I gave myself the following message. What would my mother say?

These are excerpts from my poem “Dear Caregiver”

We were not joined by blood or vows

For this kind of loving…  

The love that I needed, you have given

Before there was a thief…  

We have bade farewell, you and I,

When there was a me…  

To your courage, your love and loyalty

To want to rise above the burden of care,

I press my palms together to you.

But listen to my unspoken words,

It’s time to be free.

Free from guilt, sorrow,

Physical and spiritual destruction.

Let us both know peace.

Return us to who we were.      

                                   From Mosaic Moon  

 

We can use words to work for or against us.

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Gloria Steinem, Caregiving and Men Caregivers

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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Alzheimer’s Services of the East Bay

I’ll be posting my 2013 events calendar as they are finalized.

Oakland, CA

May 4, 2013

ASEB’s annual art auction will be held on May 4, 2013, from 6-9pm. This year’s fundraiser will be a celebration of 25 years of service to the East Bay community.

This year, our event will be moving to a new location, the Claremont Country Club in Oakland (not to be confused with the Claremont Hotel).

The evening will feature live and silent auction, live jazz, wonderful food and drink, and, of course, a celebration of the continuing spirit of individuals affected by memory loss.

Keynote speaker is poet and author Frances H. Kakugawa.

ASEB 25th Anniversary Celebration
May 4, 2013
6pm-9pm
Claremont Country Club
5295 Broadway Terrace
Oakland, California 94618

For more information, call (510) 644-8292

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Men As Caregivers

Many months ago, I was interviewed by Nina Wu of the Honolulu Star-Advertiser about male caregivers. Nina was interested in writing an article about the rise in men caregiving for their wives. I told Nina, “caregiving makes no distinction, the demands are the same for spouses, brothers, sons.”

And I told her about Rod Masumoto, who is in Breaking the Silence, and who I have talked about here on my blog before. Rod is a very special caregiver, and I am so proud of how he came to be a better caregiver by finding his voice through poetry. Even though he said he would never write poems!

Here is the photograph of Rod and his mother, Fusae, that ran in the newspaper:

It must have been fate that inspired Nina to do this story because at the same time she reached out to me, Rod had just contacted me to say that his mother had passed away. I am happy for Rod and his mother that their story was shared. Here is what Rod told Nina:

When he first walked into her workshop three years ago, he told her flat out that he wasn’t into poetry. And yet he penned his first poem that day, titled “What Do I Feel?” and went on to write 30 more.

Today, Masumoto, a retired safety system specialist, will tell you writing those poems saved his life.

He cared for his mother, Fusae, for 14 years until her death from Alz­hei­mer’s in September.

Before going to the workshop, he felt isolated in his daily challenges, which included helping his mother bathe, get dressed and eat. It was painful to him that she didn’t recognize her son or recall the things she had taught him.

Masumoto’s anger at the situation was growing, and he was overwhelmed.

“It’s a daily battle trying to survive, and (writing) helped me vent the anger and frustration,” he said.

As he wrote poem after poem, Masu­moto found not only an outlet for his emotions, but began to find acceptance for his mother’s situation, as well as a willingness to open up to changes.

“When you take care of somebody and remain in the box (isolated), you cannot survive,” he said. “You have to allow yourself to expand and to be flexible.”

Support groups can help you see that you are not alone, he said, or offer solutions you may not have considered. His advice is to be open to whatever services are available, whether it be home care, hospice or help around the house, so you’ll have more quality time with your loved one.

Rod and I talked to Nina back in October, but the newspaper article just ran yesterday. If you have paid access to the Star-Advertiser website, you can see the whole thing. Rod and I are at the very end.

In case you can’t read the article, here is a little bit more from the article, the part where she quotes me:

“We think caregiving is more for women because it demands so much nurturing, cleaning and tasks like giving baths,” she said. ”But at the end these men become the most compassionate, most capable caregivers.”

Caregiving is physically exhausting, according to Kaku­gawa, but other aspects of it, such as handling finances and legal matters, can be stressful as well.

Men may better be able to compartmentalize their feelings in order to focus on caregiving tasks at hand, she said, but it does not necessarily mean they experience fewer emotions.  Caregiving rises above all gender and brings us all to the humanities of  caring for a person with compassion and dignity. “

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Danger: Gyms can affect mortality

I scribbled this poem after visiting five of my college classmates, four  whose back, knees  and ankles have altered their posture and walk. I wasn’t that arrogant to think my five days at the gym and my usually vegetarian diet were putting me at the bottom of the list, but yes, there was that thought that I was in the safety zone and like that little red hen, “Not I,” I thought until over a week ago in the most  unlikely places.

Seasons

 

It was a time of such innocence,

A time of timelessness,

Sitting on beds in college dorms,

Questioning, not the nature of our universe,

Or that of mankind. They were questions

Not yet found in college texts.

“What kind of car do you want

Your next boyfriend to drive?”

“A sports car,” I say, “preferably red.”

“A truck,” says someone born in Michigan.

“How about children?”

And we sat naming our children

Not yet born of sires or chromosones.

 

 

Seasons have come and gone

More than we ever anticipated.

There is still speculation,

Not of the nature of our universe

But one of our own mortality.

“Who do you think will go first?”

I was pressing 110 # on the leg  press and added 10 more pounds. After six leg presses, I felt a sudden pain in my left hip. I knew I had injured myself.  I got on the floor, did some stretching movements, called the personal trainer and asked for help. I couldn’t sit and put my hands below my knees.

“Put some heat on your back, and if in a week, you’re still in pain, you’ll need to see a doctor. You could have fractured it.” I drove home and got flat on my back with ow, ow, ow.

I began to run wild with imagination. If I had a fracture, that would mean ending in the nursing home, immobile,  as the elderly; then pneumonia and I die. I needed to know now. The faster they filled my fracture with cement or glue, the faster the healing.  I managed to get an appointment and Red drove me to the clinic.

I hobbled in with a cane. (I saw a man with a cane crossing the street today and know now, I was putting my weight on the wrong leg. It’s rocket science to use a cane properly for the first time.)

The nurse, after taking my vital signs asked, ” From 1 – 10, 10 being the worst,  what is the pain now?
I said, “10″.

She looked at me. Red said, “Ten? If  it’s ten, you’ll be screaming on the floor.”

Nurse smiled with pen in air, not writing.

“9″, I said. Red said, “Nine? You’d still be screaming with pain.”

I shouldn’t have put on my face, shouldn’t have combed my hair, shouldn’t have struggled into my sassy  winter clothes.

“Okay”, I  said,” 8. Write 8 down”  and she did. Both thought I was hilarious and a wimp.

When the Doctor asked, “How long have you had this pain?” and I said, “Since this morning, ” I sensed a normal patient would have said, “about a week or two.”  Okay, I can’t stand pain and my imagination has killed me many times.

To make the visit story  short, had my back and hips  X-rayed, no fractures and I wanted to leap. He said if after a week, the pain was still bad, I would get an MRI. Got pain killers which I later couldn’t use because of nausea and was put on 200mg of Moltrin three times a day. I had problems sleeping for a week with pain…crawling out of bed was a dance of contortions. Used the cane to walk around the house.

Red was a good caregiver…went out and bought food I wouldn’t get for myself…chocolate chip cookies, ice cream, brownies. “Hell”, I said, “I’m dying, I may as well enjoy all this.”

Tuesday  was my support group for caregivers and they are so devoted, I couldn’t cancel. I took a blanket with me so I could talk lying  on the floor. Friend Mary picked me up. For the first time since the incident, I actually sat for two hours…sat and stood without getting on the floor.

Ah, poetry and caring people give stronger healing power than Moltrin.

Poet- Caregivers thought I should get on the table and they would massage me as they read their work and talked. On the way home, Mary took me to her house and gave me a good foot and shoulder massage with heating pads under my back and on my stomach. That night was the first pain free night I had…without Motrin.

Returned to the Dr after a week.  I could do all the movements he asked me to do without pain.

My PT exercises help a lot.

Thursday was  my session with the Memory Miners..my memoir writing group. I took my blanket just in case and didn’t need it. Their stories once again created that aura of healing.

I cancelled my session on caregiving and one on memoir writing for this month, at the Asian Community Center, rescheduled for April.

It’s been eleven days since that day at the gym. I have returned to the gym and yesterday, I passed the Kakugawa health test: I went to Macy’s and bought three items on sale. Pain, what pain? Not at the mall, anyway.

Be careful, folks, that snap of pain can come anytime, unannounced, in the most unexpected places. And one piece of advice…it’s best to see the doctor with disheveled hair, face without blush and lipstick and clothed in old flannel PJ’s. You’ll probably get more respect.

And my college friends and I have stopped asking…

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Kapoho: 1941-2013

1941: Kapoho Hawaii

Two young ladies, recent graduates from Teachers College, University of Hawaii, are sent on their first teaching job to Kapoho School.

They were in the same Chinese sorority on campus so they were not complete strangers.  Beatrice Ing’s father, after checking out the site of the school, bought a hand gun for his daughter and taught her how to use it should anyone try to rape her in a place  so isolated from civilization. Teachers were housed in buildings called Teachers’ Cottages, about three miles from the village.

Pina Tam, her roommate, would be my sister Janet’s 2nd grade teacher. Kapoho School consisted of three classrooms with two grades combined in each room. They began teaching in September and two months later, their lives changed as did the rest of Kapoho and the world. The Japanese bombed Pearl Harbor.

Beatrice’s gun was immediately confiscated as were all weapons in the village. It was returned to her before she left the islands at the end of the school year. She would never teach again.

Kapoho School was closed and became the headquarters for the Army. Beatrice and Pina were housed in the principal’s home, the Campbells, and taught in the then Japanese Language School. Their lives, like the villagers, would be closely monitored by  the military.

Beatrice and Pina and their fellow teachers spent all their salary  on school supplies. They drove out to Hilo every weekend and bought crayons, coloring books, and  cheese and olives, to educate the palate of the children. The children turned their noses up at cheese, but olives would become “holiday food” reserved for Christmas and New Year’s Day in many of the homes.

I was five then. My bachelor uncle spent many an evening at the cottages, under the pretense of taking papaya and bananas to the young teachers for their breakfast.

2013:

My book, Kapoho, Memoir of a Modern Pompeii is published.

Beatrice read of the book in the Honolulu paper and ordered a copy from Barnes & Noble and asked her daughter to pick it up.

We met over lunch last November in Honolulu and she confirmed many of my memories after Pearl Harbor. Beatrice still plays the stock market and just recently gave up her driver’s license.  She held my hand and said, “I never thought, in my lifetime, that I would ever meet a real author.”

She took the lei I gave her to the gravesite of her husband and left it there in a heart shape. “You are the only one I know who will know the stories I have about Kapoho,” and so we talked and shared stories.

Pina’s daughter, too, got in touch with me and a few weeks ago, both women met after all those years in Kapoho. They are 96 years old today. Pina is doing well, inspite of her dementia.

I celebrate and honor both women today.

 

 

 

 

 

Pina Tam Lee and Beatrice Chang Ing

96 years old.  2013. Honolulu Hawaii

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November: Alzheimer’s Awareness Month:Post #4

The Forever Hurrah…….

As November, Alzheimer’s Awareness Month comes to a close, for caregivers and their loved ones, awareness  does not end,  not even after death.

Caregiving is like a river, but not  a free-flowing river, for there are obstructions from the bank, attorneys, the medical world, siblings, family, and the disease itself, among many unexpected “others”.  So we humanize care giving the best we can by  not adding our own obstacles.  And sometimes, we stand up tall, both caregiver and the one being cared for and we let our voices be heard.

 

                                The Steward’s Reply

 

The day approaches when beings

from beyond the stars come to ask,
“why should the likes of you,
defective and dangerous as you are,
be permitted to spread beyond
the light of your dying sun
and onto the wonder of the heavens?”

In reply, a single caregiver
stepped out from the cloud of humanity
as if to say, “We are the Stewards of Mortality.
In all the limitless expanse of your travel,
the countless species of your wondrous universe,
have you ever met the likes of us?”

 

                by Red Slider

               page 108: Breaking the Silence

*****************************************************

                        Hey Alzheimer’s

 

Hey Alzheimer’s,

Sitting there so smug, gloating

Over the memories

You have stolen, the years we have lost.

Do I have a story to tell you.

 

You see, Alzheimer’s,

What you think you took, we kept.

Every memory we secreted away

In our children, our friends,

Our loved ones.

 

You could not rob us, though we forgot.

You could not erase us, though we could not write.

You could not silence, though we could not speak.

The stories, the laughter, the moments that passed

Into their keep, you could not steal

Into a night of silence.

 

Look at me, Alzheimer’s.

My life is restored, remembered, reconstructed,

With tools of love, dignity and laughter.

A house of memories is built

By my children, and their children

For generations to come.

 

So here I am, Alzheimer’s,

With family, friends, and loved ones.

What you thought you stole

Is still here. We are all still here.

So Alzheimer’s,

What do you think of that?

 

                        by Frances Kakugawa

                        Page 167:Breaking the Silence

 

 

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