Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Dear Frances,
Attached is something I wrote about four years ago, before Mom died and after I’d been coming to your support group for about a year. I never brought it to one of our meetings — couldn’t decide if it was poetry or prose. But I want you to have it.
WRITING FOR CAREGIVERS
If I could
find light for Mom and myself in dementia’s
darkness,
live with the uncertainty of what’s coming next,
know peace in the midst of caregiving stress,
overcome my fear and anxiety for her,
give up my need that she know who I am,
remember it’s my turn to give and hers to receive,
accept, affirm, dignify and love the person she is today
without looking for the mom she used to be,
create and savor little moments of human
connection,
follow the Golden Rule in everything I say or do,
advocate for Mom directly and constructively,
understand that doing my best is enough,
take care of myself while caring for Mom,
grieve without drowning in tears,
believe that love is more powerful than loss,
write down all that troubles me,
find a way to see it differently,
transform it into poetry . . .
If, if, if . . .
But I can’t, not alone, not without Frances to show me how.
Frances: glamorous even in her bad-hair-day beret,
petit as bonsai, elegant as ikebana, more alive than iris in May,
compassionate caregiver, poet, sensei, friend and now a painter
who splashes the canvas of my life with the bright colors
of hope, laughter and the written word;
how can I ever thank her enough?
Love,
Linda Donahue
Sacramento, Calif.
Dear Linda,
You have over-thanked me with this poem. Thank you for all the “ifs” that we caregivers live with day after day. When they are so eloquently presented, they turn our hour-by-hour life as caregivers into poetry. Thank you for taking us inward into our own.
Frances
Readers . . . By now, you’ve probably concluded that I’m a great eavesdropper, or to put it another way, a nosey listener. I heard this story from dental hygienist Teresa Thomas while she was cleaning my teeth.
My grandma died at age 99 years and 6 months. She always said she didn’t want to live until 100 because that was too old. Her grandson told her to live and he would get her 100 birthday cards, but she died peacefully six months shy of her 100th birthday.
When she entered a private nursing home, she told the owner that she didn’t like vegetables and didn’t like to exercise so the owner promised her she would comply. She pureed all the vegetables and fed her vegetable soup. She asked Grandma to go to the next room to get her a sweater or to walk to the kitchen to bring her a dishtowel. So without realizing it, Grandma had her vegetables and exercised by purposely walking.
I’m reminded of how I once messed up on breakfast for my mother:
On a cold January morning, I made hot oatmeal for her. She looked at the bowl of oatmeal, looked at me and asked, “Hideko, I gotta eat this?”
My mother never ate oatmeal — her favorite was coffee and toast, but since it was so cold, I thought oatmeal would be perfect.
I laughed, took the oatmeal away and said to her, “No, you don’t have to eat this,” and I fried bacon and an egg and made toast for her, which she enjoyed. Be aware of their taste in food. There will come a time when they will call the shots, so to speak. We follow their lead.
My friend Red said he’ll hire a Japanese cook should I ever come to need a cook.
When I helped to care for his mother, I fed her yogurt blended with milk, protein powder and fresh fruits. This was part of her culture. My mother would never have opened her mouth.
And, here’s another book review: “The Things We Keep” by Sally Hepworth.
I stumbled across this book by chance at the bookshop. It’s a novel that can easily be read in a doctor’s waiting room or in a few days.
“Anna,” who is 38, is diagnosed with Alzheimer’s and placed in an assisted living facility. She is witty, funny and reflective as she slowly begins to succumb to the disease. She develops a love relationship with one of the younger residents, but when the director of the facility insists on operating the facility based strictly on rules, rules, rules, the residents aren’t seen as people, and that becomes more devastating than the disease itself.
There is humor and sadness in this story. More than that, however, this novel illustrates some of the points made in the last two book reviews that appeared in this column. It also takes us into the thoughts of someone with early onset dementia. “The Things We Keep” is available in paperback.
Here’s a story similar to what I read in Hepworth’s book.
Two days ago, I was invited to lunch at the home of my friend Mary, who is her husband Bob’s caregiver. Bob sat quietly through lunch, dozing in-between being fed by Mary. Every now and then, he burst out in song.
There was another guest that day — Dick — who was recently placed in assisted living by his son, who lives in another city. Dick talked about how unhappy he is being among only old people. He’s 83 and owns a bookstore, which he manages to visit when he has transportation. He wants to return to his apartment that was near his bookstore. It appears Dick had no voice in the decision to move him to the assisted living facility. I could clearly see other alternatives.
But back to Mary and Bob.
I offered to stay with Bob while Mary drove Dick to the facility. I assumed Bob and I would sit and wait until Mary returned — maybe sing a few songs.
As soon as Mary left, Bob looked around and asked about her. I told him that Mary was driving Dick home and that she would be back soon. Bob perked up and tried to stand. He is very fragile and falls easily if not held.
This was our conversation:
Me: Bob, where do you want to go?
Bob: I want to execute my independence!
Me: So, how do you want to execute your independence?
Bob: I want to go outside.
Me: OK, let’s go execute your independence.
I accompanied Bob to the backyard and wrapped my arm around his waist. He shrugged me off saying, “No, you walk behind me.” After two minutes, he wanted to go back into the house because he was cold. Back inside, he wanted to go to the living room and sit in a specific chair where the sun’s rays comes through the window. Then he asked to use the bathroom. I was complying nervously — suddenly back to being a caregiver and hoping Bob wouldn’t fall. He finally sat and sang songs, like “How Much is That Doggie in the Window,” “Sentimental Journey” and “Blue Moon” until Mary returned. He asked me to not leave, to stay with him and I promised to return “tomorrow.”
Mary and I talked about how Bob knew that once she was out of the house, he could get out of his usual routine with my help to “execute his independence.”
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. 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.
