Caregiving: A Dignified Life

Registration is requested. We cancelled the last session due to lack of interest and later discovered, many didn’t register. Numbers are needed for room set up and hand-outs.

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A Dear Frances Column for Caregivers

 

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

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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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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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AARP Conference:Hawaii

It was a privilege to give the keynote address on Dignity in Caregiving at the Hawaii AARP conference yesterday. The poetry writing workshop I conducted after giving the address led to very deep probing by caregivers. Those who have attended my sessions in the past are familiar with my one blade of grass  to get ink on paper. One caregiver discovered as she wrote, that her mother was the blade of grass.

Following is an email from Linda Nagata, a former caregiver- member of my poetry writing support group in Honolulu.

Aloha FOF (Friends of Frances),

 

It was my honor to attend the above conference yesterday and hear our favorite keynote speaker. Frances, in her boa, once again had the crowd spellbound.  You could have heard a pin drop in the conference room.  She read her poems and talked about caring for her mother -and even things I had never heard her talk about before.  It is always emotional to hear her, and as usual there were tears in my eyes.  Frances truly does a great service for other caregivers by letting them know what they are thinking, feeling and doing all have value. 

 

Frances inspired me to come home and read more of our poems from Breaking the Silence.  I still laugh over Elaine’s “More Glimpses of a Daughter and Mother”,and Jason’s always are so deeply felt and thought out.  It has now been 21 years since my mother departed.  Last night was the first time I was able to read my own poems and not cry.  Imagine – 21 years it has taken me to get to this point! At least I have reached it, and I consider that an accomplishment. 

Thanks Frances for all the encouragement along this bumpy road.

 

Care giving, as Linda points out, does not end when our loved ones are gone. Linda explains this in her poem written after attending our poetry support group.

 

Sensei (Teacher)

She came notebook and pen in hand

To lead me out of my morose state,

Encouraging, cajoling, insisting

Write, write, write.

Others spoke of current dilemmas, emotions.

I was stuck in the past —a dozen years gone by.

“Why am I so emotionally delayed?” my mind asked.

Then the wiser voice said, learn and move on.

Sensei says write, write, write,

Write about one small thing

I try to focus on one small thing

Dredging up the aged memories

Like buried garbage they are not pleasant,

Helplessness, anger, resentment.

Write, write, write

A miracle happens

The bitter emotions, softened, turn

Into acceptance and peace.

Write, write, write.

        By Linda Nagata: from Breaking the Silence: A Caregiver’s Voice

Linda, after exploring her grief through poetry, left the group saying she was now ready to move on. It looks like she finally did.

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Nursing Facilities: part two

continued from last posting:

The nursing staff and I sat in groups of five or less and brainstormed on this list of commitments which we titled : Let Me Make a Difference. If you wish to do the same with your loved one’s nursing home staff, I suggest that they create their own list to have true ownership. The second list  was written by me, taking the voice of  the residents.

 

Let Me Make a Difference

From the Staff:

I believe the trust given to me for the care of each resident  will help me fulfill my duties with human kindness and compassion.

I believe every resident  is a special human being who still receives messages even if one is deaf, blind, or unable to speak.

I believe every resident receives messages through the tone of my voice, the way I physically apply  my nursing skills and my feelings toward my job and toward the resident.

Each will know by my presence alone.

I believe every resident deserves to have his or her dignity preserved and honored by me.

I believe it is my duty to continue to improve  and practice the best possible nursing skills in

caring for each resident.

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

To My Extended Family

From the Resident

Thank you for being my support system during the last years of my life. I am totally dependentupon you and I wish for you to help me live these last years with dignity and compassion.

Thank you for your gentle touch, your soft speaking voice. Thank you for not dumbing – down to me as if I were a mindless child. I still am an adult held prisoner in this body and mind.

Please know when I am not cooperative and when I yell or fling my arms at you, and fight you,  it is my way of saying, “Please help me. I don’t know where I am, who you are, and I am totally confused and scared in this world that makes no sense to me.”

When I shout and stop you from doing your work, I am saying,” Please help me preserve my dignity. I am so ashamed you need to clean me like a helpless child. I am so ashamed to have you see me like this. Please be gentle with me and respect me even in this condition.”

When I am combative, please know this is not me, but it is the disease that has taken over the person I am. I live in  the shadow of who I am.

Please remember that once upon a time, I was a person just like you and that person is still here.

My family has given you total trust over the care of me and I am grateful and appreciative of you.  Thank you.

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Nursing Facilites: Final Home

Turning Nursing Facilities Into a Home

At our last writing support group for caregivers,  the subject of nursing facilities arose, threaded with guilt for “putting mom or dad away.”

I speak from my own experiences of having my mother in a nursing facility  during the last one and a half years of her life.  I  did not put her away.  During her last stages of Alzheimer’s, it was time for someone with more capability and expertise to take over caregiving. I was down to 94 pounds and couldn’t turn her over due to retina problems.

I became part of this family of professionals at the nursing facility.

As starters, I did their bulletin boards and the front counter with a holiday theme every season. The staff was delighted to get off the elevator and be greeted with an attractive bulletin board or a flower arrangement or a poem.

I visited my mother to feed her at lunch and my brother Paul did the dinners.

I wheeled all the others into the solarium for their meals and after feeding my mother, I fed others.  I helped to pass their lunch trays to those who were bed-ridden. Sometimes, I took their laundry and had the residents do the folding after their lunch in the Solarium.  So I knew the other residents on my mother’s floor. Paul did the same.

I left treats in the nurses lounge to show my appreciation.

When I saw a need for change, I  got involved. I wanted each staff member to see my mother not only as a resident,  but as a family member. I wanted  each staff member to care deeply , not only at a physical level,  but at an emotional level. I wanted each person to look forward to work and to feel pride  and joy. Through the director, I conducted training workshops for all the staff at each shift.

They  brain-stormed on how to become happier and more efficient in their work. This is one of the results of our brain-storming. This list was posted on the wall in the lounge.

I asked each staff member to work on one area of change. We listed these on a chart and left them on the wall in their lounge. We had follow up sessions and they bought into this, with full force and began to work on their own individual areas of need . Some were simple: Wait until  residents swallow their food before putting another spoonful into their mouths. Know each person’s name. If  a resident was a  former doctor,  call him or her by their known title instead of  Papasan or Mama-san.

We learned to dignify each patient who was under their care. Eventually, we all transformed the floor into a family unit and soon other floors began to follow suit. They got competitive in a good way, each trying to be the best in human care. We ran a door decorating contest for each resident during Christmas for families.I played my flute badly and they applauded and one residents asked if I had a CD she could purchase.

Yes, I had to ignore that feeling that arose at times: I’m paying close to $6,000 a month and why should I be doing all this work? Because it needed to be done for the sake of my mother. After my mother and I left, another family member continued what I had started.

So, no, I didn’t put her away. I went with her.

During the one and a half years, I initiated the removal of one health aide after she poured scalding hot water over my mother during her bath. You  can say I became a sort of watchdog.

On the day my mother died, I came out of her room and the entire staff stood in a line against the wall outside my mother’s room. They had tears on their faces. We hugged each other without saying a word. This is what families do.

To be continued in my next posting: The entire staff brainstormed and made a  Let Me Make a Difference list of commitments and a I Am Somebody list of requests from the voice of the residents. These became permanent on the wall of their lounge.These two lists will be forth-coming.

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July In Hawaii for Caregivers

Lectures and Writing Workshops for Caregivers

I’ll be in Hawaii during July to work with caregivers of loved ones with Alzheimer’s or other dementia-related illnesses. Please join me if you’re in Hawaii. For those not able to be in the islands with me, I’ll keep you posted on my Blog.

July10:Poetry Reading
Alzheimer’s Association: Doc Buyer’s Fund Raiser
Hilton Hawaiian Village Ballroom
5:30-8 p.m.
Registration through the Alzheimer’s Assoc:
Ph: 591-2771

July12:Caregiving with Dignity ( Lecture only)

Japanese Cultural Center, Honolulu
9 – noon
( due to high interest, registration is closed. See July 27th event, open to public)

July 23:A Caregiver’s Voice: Lecture and writing workshop
Maui Alzheimer’s Assoc: Kaunoa Center
10 –noon
Open to the public

July 25: Reading and poetry writing for children
Borders at Maui Marketplace
1 – 2 p.m
I’ll be reading my children’s book, Wordsworth the Poet, and a poem from Wordsworth Dances the Waltz. This will be followed by a poetry writing activity for the youngsters.
Open to the public.

July 27:Caregiving with Dignity ( Lecture and writing workshop)
Alzheimer’s Association: Honolulu
Ward Warehouse Conference Room
4:00 – 5:30
Open to the public

Please get in touch with me for specific details at
fhk@francesk.org

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The Last Train From Hiroshima by Charles Pellegrino

In 1945, I heard my parents discuss the death of their families in Hiroshima. A child, I didn’t know the significance of that day, a day that my ancestors were all destroyed.
I later wrote:

Hiroshima

We cut the chrysanthemum
Off its stalk
And left it naked in the sun.
(from The Enemy Wore My Face,not yet published)

In 1989, Noriyo, a third grader from Hiroshima entered my classroom. Her grandmother, who was child during the bombing, was now dying from cancer. Her entire family moved to Hawaii on their  doctor’s recommendation: Go to Hawaii where it’s warm and sunny for the remaining year of her life.”  I wrote a poem for Noriyo:

44 Years Later

a dark mushroom cloud
follows me across the Pacific
into my classroom.

forgive us, Noriyo
for Hiroshima
and Nagasaki.
( from The Enemy Wore My Face, not yet published)

In 1995, Dr. Jiro Nakano edited and translated 100 tanka poems written by survivors (hibakusha) of Hiroshima in a book called Outcry From the Inferno. I was deeply honored to be one of the English editors.

In 2010, I read Charles Pellegrino’s The Last Train from Hiroshima.
Nothing, not the discussions in our kitchen, my poems, the editing I did to Outcry From the Inferno, nothing is more real than this book. A tanka by  Dr. Nagai, one of the survivors in Pellegrino’s book, is included in the Inferno book. One of the survivors bears the same name of my mother’s family. Mr. Pellegrino, thank you for the open wounds that will never be healed nor forgotten.

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