Transcending the Burden of Living In the Age of COVID-19

When I thought of topics for the first edition of our new newsletter, I was hoping to have something that would fit with National Poetry Month and something that might pertain to the COVID-19 pandemic crisis at hand. I didn’t really think of connecting the two until I thought of Frances Kakugawa.

Readers to our old newsletter may remember Frances Kakugawa (see our January 2009 newsletter).

Frances is an author, children’s book author, poet, educator, blogger, advice columnist for the Hawaii Herald, and has conducted workshops on poetry writing for caregivers. She even did a haiku writing lesson for us at the Foster City Library back in 2012.

I was just rereading parts of Frances Kakugawa’s wonderful book Mosaic Moon: Caregiving Through Poetry: Easing the Burden of Alzheimer’s Disease and began to realize just how well she fit with the original theme I had in mind for this newsletter.

Interview

I will start by encouraging our readers to read our interview with you from January 2009 (https://asianamericanbooks.com/newslets/nl0109.htm). I just reread it myself and thought it would be a useful starting point.

Thank you for agreeing to do this Frances. How are you? How are you coping with the crisis we are in? I understand that you’ve lost a dear friend to the virus. My condolences to you and the friend’s family.

Setsuko Yoshida died from the virus in New York City. We met when she attended my first poetry writing support group for caregivers in Hawaii. She was caring for her husband who had Alzheimer’s. I called her my living Buddha. I always felt like an undisciplined pine next to a Bonsai whenever I was with her. She was moved to NYC by her son and lived the last years in a nursing home. One day she was saying over the phone of how she missed Hawaii and all her friends, then she stopped in mid-sentence and said, “I am forgetting to be happy exactly where I am,” and she stopped wishing for things outside of her grasp. The irony is this: When she was an RN during the AIDS epidemic, she opened the first AIDS unit in Hawaii and was recognized for her compassion and courage in tending to all the AIDS patients, and here, during our next epidemic, she died alone. Her complete list of poems can be found in Mosaic Moon.

It’s been over 10 years since we last interviewed you. Tell us about what you’ve been up to, such as the books you’ve written since and other things of note. Are you still doing workshops with caregivers? I see from your blog (https://franceskakugawa.wordpress.com/) that you are still actively writing poems.

Yes, I’ve been traveling throughout the U.S. helping caregivers become the most compassionate caregivers, using dignity as our source. I recently published my 14th and 15th book titled: Dangerous Woman: Poetry for the Ageless and Echoes of Kapoho. Echoes is a memoir, beginning with Pearl Harbor to my present. I also published two more books on caregiving and would recommend my most recent book called: I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving.

I have learned so much since Mosaic Moon and share some of this new knowledge in I Am Somebody.

I also published two more Wordsworth children’s books since Wordsworth Dances the Waltz. The third is: Wordsworth! Stop the Bulldozer! Can Wordsworth and his friends stop the destruction of trees through their poetry?

The fourth is titled: Wordsworth, It’s in Your Pocket. Wordsworth no longer sees his friends because they are all addicted to their electronic devices. Once again, he uses poetry to bring them back to nature and friends. Wordsworth continues to resolve human problems through poetry.

He is now the mascot for the Alzheimer’s Association in Hawaii and is visiting islands helping children embrace our elders, especially those with dementia, through the efforts of Patrick Toal.

Grandma

When Grandma hugged me

And said, “How’s my Wordsworth?”

When Grandma sent me presents

On special days of the year,

When Grandma gave me candy

Right before dinner time,

When Grandma told me stories

Way past my bedtime,

She was Grandma to me

Because she was Grandma,

Not because she had a memory

Or because she knew my name.

Now that she’s losing her memory

She’s still my Grandma, isn’t she?

From Wordsworth Dances the Waltz

By Frances Kakugawa

Being a current caregiver, I was struck by how my life has not changed that drastically in the age of COVID-19. Sheltering at and working from home is nothing new for me. I was reminded of this when I was sharing ideas on time management with some of our volunteers who were unaccustomed to working from home. Can you help compare and contrast the experiences of the lives of caregivers and those they care for with the life altering changes people are now experiencing as a result of the COVID-19 pandemic?

The difference seems to be this: With COVID-19, many of us are healthy people working at home. We are responsible for healthy family members. A caregiver, in addition to being responsible for other healthy family members, also has a loved one who needs total care and attention without the medical and caregivers’ help that were available before COVID-19. A caregiver has less options.

It’s very difficult to get items that we took for granted like Depends, special food lotion and instant medical help. We can’t make visits to clinics anymore, etc. There are less people to help us share responsibilities.

Hired caregivers are now gone. I recently advised caregivers to be careful of hired caregivers because they are exposed to other families. One caregiver continued to have their caregiver into their home and she came down with the virus. Now the caregiver and his bed-ridden wife are in quarantine. We need to be sure, if hired caregivers are very necessary, we do not share the same rooms and constantly sanitize everything she/he may have touched. Taking temperature before she or he enters the house may be another preventive measure. Home-bound means not having anyone enter the house. We need to do this.

In a sense, we’re all caregivers now - we’re all looking out more intently for each other and ourselves, and we’re all confronted with the ever present mortality of those we’re caring for. Can the life coping skills of caregivers be a model for helping people get through our current crisis?

We need to return to who we are, our own humanity. As Sets said, I’m forgetting to be happy exactly where I am.

When I was a caregiver for my mother, I let go who she was and lived with the new person who was evolving before me. Wishing for who she was and wishing I could have that person back would not change anything except to create grief between us. I learned to love and honor the new person before me and that brought moments of joy. I let go my plans of golfing or going for my flute lessons. I said, “I’m a caregiver and I’m going to do the best I can.” Being in the present and doing the best we can, help unlock this feeling of being placed in an entirely different world. Help those around you find this home-bound life an adventure. Use your creativity and imagination instead of using electronic devices which can isolate us from one another except in communicating with others. Challenge yourself and discover a new you.

Living with kindness to strangers and to those we know can be one of the best surviving tools ever.

Past students have gotten in touch with me. A former 1st grader from Michigan, now in Maryland, sent me a homemade bag and mask. Others have sent emails. For me, when I’m down, the best lift comes from reaching out to others through telephones, written letters and a check if it’s affordable. Somehow, this brings joy and I feel connected to the human race.

For our young folks, we can’t go shopping for gifts anymore. How about using writing? On your fifth birthday, ask your grandparents or parents to write you a story of a memory when they were that age. And you write them a story of something special that happened to you. We do this year after year. Writers are very honest so we don’t only write about the good things we did. Adults, be honest…be human…be real…if you did something rascally bad, write about that. In my most recent book, Echoes of Kapoho, there is a story of how I was suspended from school in the fifth grade. Now, wouldn’t you want to know why? We need to appear as human as possible. We are not writing to teach. We tell these stories to preserve who we are.

How can creative activities like poetry writing help lessen the worries, fears, anxieties, anger, and depression that we may be feeling?

Sometimes the best answer is one discovered by oneself as Rod did.

Rod, a Japanese samurai sort of man, a caregiver for his mother, came to my session and announced, “I don’t read or write poetry so don’t expect anything from me.” We wrote after my lecture and he was weeping. An excerpt from his poem:

He later sent me over 30 poems he had written over three months. His poems first questioned God, then Life, then questioned the beast in himself. He became the most loving and vigilant caregiver. Before his mother died, he wrote:

“You saved me and that matters to me. I would have carried much more grief if I didn’t release the frustrations of being an angry son. How could a man writing poetry make him stronger and a better caregiver? Yet, this happened to me. Thank you.”

Rod was planning to kill his mother who had Alzheimer’s and himself before he came to my lecture. He used his poetry to explore the entire process of giving care to his mother. Poetry does this…we can look at what is there right before us and with poetic license, we can reinvent that truth into something gracious, beautiful, and humorous and this art form helps to return us to our own humanity. And for today’s shut-in, don’t forget your sense of humor.

Beware of Childhood Wishes

Oh no, instead of toilet paper, I should have put hair color on top of the list.

And I should have married a hairdresser.

My head has always been cared for by hair dressers from haircuts, shampoo/ blow-drys grey root color.

When I was a child living in a village, my father always gave me short haircuts because hair lice often sent the cafeteria manager into classrooms to give an “uku” test, checking each head for lice. We always had those Japanese bamboo lice combs in our house. We called them ‘uku’ combs, lice in Hawaiian. I always wanted long hair like the other girls. When my hair began to grow and I could stretch my tongue to the side and touch my hair by pulling them to my tongue, it was time for another haircut.

Then the fashion experts said people with a long face like mine need to wear their hair short and succumbing to experts, I never had hair growing below my chin.

Now, with hair salons closed, if you see a woman with a long grey pony tail, please tell her, “I like your hair.”

By Frances Kakugawa

In Mosaic Moon you give a great summary of your poetry workshops and the lessons and experiences you had. It’s much more than we can cover in this single newsletter interview, but is there some simple lesson that you can impart to our readers to help them get started on writing their own poems right now?

Leonard, as simple as a blade of grass:

If you are saying, “But I don’t know what to write about. I’ve never written a poem…” think of one blade of grass. Not the entire forest, not the entire ball field. Just one blade of grass, one feeling, one idea, one event and write about that. Just put those words down on paper. Don’t worry about spelling or grammar. Just write, starting with one. Forget the poetic form. You may express yourself in paragraph form. Then find a poem in them. When Sets first came to my session, she wrote the following journal entry on her first day of our support group.

Poems read by Frances Kakugawa this morning reveal the feelings of “Divine” in caregiving. How can this be? How do I reach this point in caregiving for my 84-year-old husband who is returning to childlike ways? I have such anger, resentment and frustrations at times that overwhelm me at unexpected moments throughout the day and nights. Could poetry and journal writing bring me some solace to truly see me for who I am?

Now look at the poem structured from her writing. I didn’t change a word, only picked out her own words and rearranged them in poetic form.

Can I?

Poems by Frances this morning

Reveal the feelings of “divine”

In caregiving.

How can this be?

Can I, too, reach this point

In caring for my 84-year-old husband

Who is returning to childlike ways?

Anger, resentment and frustrations

Overwhelm me at unexpected moments

Throughout the days and nights.

How can I deal with such thoughts and feelings?

Can poetry and journal writing bring me some solace

To truly see me for who I am?

By Setsuko Yoshida, from Mosaic Moon

I don’t have your later book "A Caregiver's Voice: Breaking Silence Through Writing" handy, just Mosaic Moon. In Mosaic Moon you have a great “Suggested Resources” section. Can you please share your latest favorite Internet resources and book titles on poetry writing?

Read poetry. Take out your old poetry books from childhood and high school. Remember William Wordsworth’s “I Wandered Lonely as a Cloud” or Robert Frost’s “Two roads diverged in a yellow wood. And sorry I could not travel both”?

I’m going to let my ego in and suggest my three books: Dangerous Woman: Poetry for the Ageless, I Am Somebody and Echoes of Kapoho. Readers say they are now writing their childhood stories after reading my Kapoho book. You may want to start writing down stories of your childhood while being house-bound. Use a pen and paper. Find a special place in your house, go to that spot to write and say, “I am a poet. I am a writer.” And write. Use all forms of writing…a letter to each member of your family, a story, a poem, or a song. This could turn into a family affair.

Many of my thoughts are posted on my blog which you may want to visit. Go to the side bar for poetry or any of the other topics you find of interest: franceskakugawa.wordpress.com

To caregivers, one last message. You are that select group of people who live the humanities day after day. What better gift to leave to your children and grandchildren than the gift of knowing what it means to be human.

Omoiyare

There will be no Nobel Prize for what we do,

no trip to Sweden, no medals, gold, silver or bronze.

But here we stand, Caregivers, past and present, preserving

for all generations, this lesson learned in what it means

to be human…

Once we abandon this heritage, all the years spent,

day after day, year after year, in the shadow of the thief…

all would have been for naught. Bruised, frayed, tattered,

like a flag after battle, we stand

with Human Kindness and Compassion,

a legacy for ages hence.

From I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving

By Frances Kakugawa