Three Stories For Caregivers

Three Stories For Caregivers

Photo of Frances Kakugawa

Frances H. Kakugawa
Hawai‘i Herald Columnist

Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa

How do I know?
How do I know?
Your lives are filled
With grief, exhaustion, fears
And sadness laced with poignancy.
How do I know?
You are here, seeking perhaps
A magic wand bearing your name
To untie that knot that has taken residence
Inside of you.
How do I know?
Because you are here,
Listening to my poetry
In a cold, air-conditioned room
While the Hawaiian sun and breeze
Are beckoning outside.

You are here
So I know.

© Frances Kakugawa
Dear Readers,
I am back home in Hawai‘i on a book signing/lecture tour as you read this. There is something in our Hawaiian air that calls for talk story time, so here are three special stories.
By now you know that I believe strongly in the power of the pen. There are many stories to be told of how writing has helped caregivers. My books on caregiving attest to this, as caregivers not only find a therapeutic friend in writing — they also gain valuable insights into what it means to be a caregiver.
The following stories come from the other side of my pen.

STORY ONE:
A man in the audience approached me with tears in his eyes. “Thank you,” he said, “for reading your Emily Dickinson poem.* I wish I had heard this poem when I was caring for my wife, who died from Alzheimer’s disease a few years ago. I wasn’t a patient caregiver. I wish I could go back to care for her.”
“We all do the best we can,” I told him. “I, too, have many regrets, which is why I try to help other caregivers. You, too, can do this. Don’t stay with your regrets — use them to help others.”
He stood there in silence for a while, then said, “I can do that. I can volunteer at the place where my wife spent her last years. I knew there was a reason for my coming here today.”
Yes, I thought. I see this happen often in my support groups and in audiences across the U.S. Sharing our words and experiences can have as significant an effect on others as they do on the writer/caregiver. A caregiver attends a support group with anger and fear overpowering her ability to give proper care. She hears other caregivers in situations similar to hers, but their words acknowledge a different attitude. Soon, a thought enters that caregiver’s mind: Others are so compassionate and loving . . . I, too, need to be where they are. I need to change.” And change happens. So, sharing our experiences and writings in support groups can turn us into still another kind of caregiver: change agents/poets/caregivers.

* “Emily Dickinson, I’m Somebody” appears in my caregiving books.

STORY TWO:
My tax accountant told me this story.
His best pal is caring for his wife who has Alzheimer’s disease. He’s very protective of her, so he keeps all his readings on the disease out of her sight. One day, however, he left my books in the living room and saw his wife reading one of them. Before he could take the book away, she began to read. She wouldn’t let go of the book, saying, “This is very interesting.” She read the book cover to cover and said, “I feel good about all this.” He realized then that he was not doing her a favor by not discussing the disease with her. Evidently, she saw the positive side of the disease with the right, caring caregiver.
Wouldn’t it be beneficial if we could discuss Alzheimer’s disease openly, listen to the ideas and feelings of our loved ones and start making plans with them? If it’s too painful for family members to talk about the disease, wouldn’t a support group for early detected Alzheimer’s disease be helpful so that a non-family member can help them express themselves?

STORY THREE:
This time, a woman followed me out of the conference hall, where I had presented the main address on caregiving. This was earlier in my life as a lecturer. My first caregiving book, “Mosaic Moon,” had just been published and I was invited to speak in Seattle and Sacramento.
“I was a caregiver, too, when I was 12,” she began. She pushed her long sleeve up toward her elbow to show me her bare arm. “Look,” she said.
I stood speechless at what I saw and could only wrap my arms around her fragile body. “I am so sorry,” I said. “Will you tell me your story?” She did, as she covered the tattooed numbers on her arm.
She was just a child in Germany in World War II. Her father and brothers were taken from their home and never seen again, so this 12-year-old was caring for her mother, fearing that knock on the door. They both knew the guards were in the neighborhood.
Their physician came to their door one day with a note written on his medical stationery. “Show this to the guards when they come,” he said. “I hope this will save you. See, I have signed my name on this.”
The note read: “This woman has a very bad heart and won’t survive too many days. I highly recommend that daughter be allowed to stay to care for her mother these last few days.” She and her mother were elated, knowing their doctor had come to save their lives. No one in his or her right mind, would not respect and honor a doctor’s note. They felt safe.
As expected, the guards came knocking at their door. The young girl confidently handed the doctor’s note to one of the guards. He read the note, laughed, and tore it into shreds and tossed it into the air. They took both mother and daughter to Auschwitz — the death camp.
When they arrived at the camp, her mother was taken to the left and she, to the right. She kept crying, “I want my mother.”
For the next two days, she was told, “She’s in a hospital. You can see her tomorrow. We’re taking care of her. ”
After a few days of these repeated exchanges, a fellow prisoner pointed to the incinerator and told her, “See that smoke over there? Your mother’s in there. You won’t see her again.”
“I vowed then,” the woman told me,” that I would never cry again. Nothing in my life would be worse than that day.”
She looked at me with tears in her eyes and said, “You made me cry for the first time today. I didn’t know I had any tears left, but your poems today about caring for others made me cry.”
I held her again and could only say, “Crying is good, isn’t it?” She nodded as we both wept.
A POEM SPEAKS
I am poem…
Mender of broken souls . . .

I file the edges of jagged nails,
Torn and clawed by human toil.

I take the salt from human tears
And wash out human pain.

I flow the blood caked deep
Beneath each punctured wound.

I take the weary off their feet,
Washing sand grains between toes.

Come, my child, and walk my shores . . .
I am mender of human souls.

I am poem.

© Frances Kakugawa

Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on Hawai‘i island, she now lives in Sacramento, Calif. Frances has melded her professional training as a writer and educator and her personal caregiving experiences to write several books on caring for people with memory-related illnesses. She is a sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with the stresses of caregiving.

Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease. A native of Kapoho on the Big Island of Hawai‘i, she now lives in Sacramento, Calif. Frances has melded her professional training as a writer and teacher and her personal experiences as her mother’s caregiver to write several books on caring for people with memory-related illnesses, including one for children. Frances is a highly sought-after speaker, both in Hawai‘i and on the Mainland, sharing strategies for caregiving, as well as coping with caregiving.

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