Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
I happened to read a year-old edition of The Hawai‘i Herald, which featured your story titled, “Two Normal Worlds.”
My own mom passed away earlier this month at the age of 97 after living with me for nearly five years. While she was never diagnosed with Alzheimer’s disease, her dementia did take her to another place quite often, but she always came back. Even in her final weeks, she would drift back and forth. What would always bring her back was a visit from a great-grandchild. My grandson, born this past January, would always make her open her eyes and smile.
Many of the characteristics you described were familiar to me. Late at night, while she “slept,” my mom often had conversations with long lost friends/relatives, especially her brothers, as she was the sixth of nine children, with two brothers above her and two brothers below her. From her colloquial use of Japanese, I could tell if it was a younger or older brother she was talking to. [From] what little I remember of Japanese, those conversations seemed to be during childhood play. I kidded her about it later.
Whenever I took her to an appointment, she would ask if (whoever was there) would be going, too. My standard reply was that he/she didn’t have an appointment that day. Then at the doctor’s office, she could answer his questions in such a way that had me flabbergasted at her lucidity.
The hardest times were when she would get out of bed during one of her spells. It was so weird since she required a walker, but, somehow, could walk without one during that spell. One night, she came into my room in a panic, saying she had to make 30 rolls of sushi. I had to think fast, so I told her I was short on nori (seaweed) and would buy some later when the stores opened. She then went back to bed and forgot about it by morning.
Her final two months were spent in a respite/care home, as she had become bedridden and I could not physically care for her, even with help coming in to bathe her, etc. I was able to visit her nearly every day and was with my mom when she went, finally.
Will you be my caregiver someday? You are a natural at how you entered your mother’s world so easily, humorously and so wisely. In so doing, you dignified the both of you.
There are so many mysteries to this disease. I’m reminded of my mother who leapt out of bed and walked across the room to “make tea” for the Buddhist minister who had entered her room. She was bedridden then and unable to walk. The nurse slowly helped her back to bed.
Thank you for mentioning children. There seems to be a very special bond between children and loved ones who have dementia, so I’m a strong believer in having children become part of their lives. At my mother’s nursing facility, a kindergarten class from Mänoa School made a yearlong project of visiting the home. They brought drawings and other art projects and even the nonverbal, bedridden residents had that joyous look in their eyes.
At Wai‘alae School in Honolulu, I read my “Wordsworth Dances the Waltz” children’s book, after which a third grade class began a year-long school project, visiting a nursing facility and helping residents write or draw their own history. They all became Wordsworth the poet. Children seem to be naturals with our elderly.
In Los Angeles, a group of nursery school students spend a few days a week at a nursing facility. They have become protective of the elderly as they take walks with them, sing or do art projects together, have snacks, or just sit and hold hands. There is constant eye contact between the children and the residents. That special glow on the faces of the residents and the children is heartwarming. Think of what the children are learning about compassion and kindness and of their own humanity.
So, thank you, Kathy, for reminding us of our wondrous children.
Here’s a poem from my children’s book, “Wordsworth Dances the Waltz.”
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?
ON THE LIGHT SIDE OF CAREGIVING . . .
“Naked in the shower! Guns drawn!!” (your story in last month’s column on laughter) Extreme fear in the moment — hilarious now!!
For the longest time, I let my mom wear her nylon panties with her pull-ups on TOP of them. This was so that she’d have the silky nylon that she was used to next to her skin, rather than the papery pull-up. It made wearing the pull-ups not so objectionable, and I’m sure you all understand the advantages of that!! Of course, this meant that Mom’s panties always became soaked.
Well, for a while, my mom had an evening caregiver who always threw out Mom’s sopping-wet panties when the caregiver changed her. Now, I don’t know if you realize this, but it’s gotten harder and harder to find full-coverage ladies’ nylon briefs, as the department stores have either died or gotten too hip for anything but fuchsia thongs. So, besides trying my darndest to get the caregiver to not throw out Mom’s panties, I would be out in the garage after I got home at night, going through a bag of bathroom garbage, trying to retrieve my mom’s urine-soaked panties.
Seems funny NOW!
It never occurred to me to have her use regular panties next to her skin. How very thoughtful!
A former caregiver wrote that The Vermont Country Store sells old-school underwear and, in her words, “It’s a mail order outfit selling plain and simple things, in addition to stuff you thought was long gone, such as Tangee lipstick, Midnight in Paris cologne, Lanz flannel nighties . . . a trip back in time.”
Readers . . . Have you ever made a split second decision that later made you feel sooo good about it? I had an experience that I’d like to share with you.
I was sitting at a table, signing my books, when an elderly woman brought her copy to me.
She: “Will you sign my book?”
Me: “I’d be honored to.”
She smiled at me, standing there, her eyes looking straight into mine. I autographed the book and handed it back to her.
About 15 minutes later, she brought her book to me again.
She: “Will you sign my book for me?”
Me: “I’d be happy to.”
I took her book with my signature and message already inked in. I lifted the cover of the book so she couldn’t see me write and I moved my pen along, pretending to write in her book. I returned her copy to her and she was so pleased.
She stood there, smiling, her eyes looking into mine. I asked her to tell me how she spent her leisure time and she described all of her fruit trees.
I remember seeing that look so many times when I was teaching — students connecting looks with me, unable to hide the genuine joy they were feeling over a discovery they might have made about themselves, their teacher or about learning.
That woman was the highlight of my evening because, without knowing, she had tested me on how to honor one another, and I had passed the test in the split second that I didn’t say, “But I’ve already signed your book.”
Sometimes we do something extraordinary with the simplest of acts by simply remembering to dignify another human being.
I will be in Hilo and Honolulu this month for lectures and workshops. If you are in the neighborhood, please drop by and say “hello.” Details are available on my blog: http//franceskakugawa.wordpress.com.
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.