Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Do you know what bothers me at times? When I see my wife Fran just sleeping, unable to speak anymore. I wonder if she’s comfortable or if she’s in pain. I wish I knew what she was thinking. I can’t tell. I know she is still here because when I kiss her and tell her I love her, sometimes there’s a smile on her face. Before she got ill, she was a very spiritual person and she believed she would be with her mother someday. They were very close. I like to think maybe she’s with her when she’s peacefully lying there.
I wrote this poem after thinking of what she would say to me if she could speak. Reading this comforted me, so thank you for encouraging us to write poems.
Don’t fret, Bob, I’m in a very good place.
I’m being fed, bathed and cared for like a precious baby.
I am at peace and unencumbered by the burdens of daily life.
Sibling quarrels or political strife do not faze me.
Just think, no more housecleaning, especially
All of my needs are met, freeing me from earthly concerns.
I feel connected to my mother and those who
I have no fear of what awaits me and I feel love.
I know not time or tomorrow; I know only now.
© Bob Oyafuso
This is beautiful, Bob.
Once again, you have confirmed the therapeutic power of writing poetry, which can help to reinvent the truth that is before us and create a new truth. In your instance, the truth of seeing Fran being nonresponsive brings questions of concern to you. But giving her voice, as you did, changes that silence.
Writing poetry demands constant decisions. Do I write about her silence and my grief, or do I bring back her former voice, her voice that used to always comfort me? Your decision to go with the latter brought you comfort and a sense of being in communication with Fran. I hope you are reading this poem to Fran. I believe there are moments when the window to her brain opens and she will be in the present. You can believe she hears this poem and is so grateful that you are tuned in to her silence.
Readers: You may want to take the voice of the one you are caring for and write a poem. What would they be saying to comfort you? Don’t forget to bring in humor. We need all the laughs and chuckles we can get. And will you share your poems here in the Herald?
Thank you again, Bob, for sharing your poem and thoughts.
A caregiver whose mother has dementia and whose memory is now reduced to less than a minute shared the following story.
The caregiver recently learned that she is going to become a mother for the first time. When she told her mother the good news, her mother’s face lit up into the biggest smile and she reacted with happy sounds. Seeing her mother’s joy, the daughter decided to repeat this joy over and over again, so she announces her pregnancy to her mother throughout the day.
When our loved ones ask the same questions over and over, in their mind, they are asking their question for the first time. Knowing the nature of dementia — that it is a memory-loss illness — we should respond like we are hearing it for the first time. Do you see how this also works in reverse?
There is almost a feeling of unexplainable magic in experiencing that sense of joy and purity in both our worlds. Yes, both our worlds! Their world is as normal to them as ours is to us, so keep entering their world. If they hallucinate and see someone who died a few years ago, enter their world — do not deny their appearances. Too often, we give care by thinking our world is the only “normal” one. This can lead to a disconnect. When we enter their world, we are dignifying their world and the persons in it.
The following story is by Kent Pollock of Sacramento, who has been diagnosed with dementia. Kent is a retired journalist and journalism professor. He was previously the assistant managing editor of The Sacramento Bee and editor of the Anchorage Daily News. Kent’s essay originally appeared in the Sacramento Bee. Please share your perspectives, insights and comments with him at email@example.com or with this “Dear Frances” column. Thank you, Kent, for inviting us into your world. I felt your eloquence and courage throughout your story and am honored to share it with our readers.
It has been about three years since my dementia diagnosis, but I am just beginning to better understand the relationship between memory and memories.
While I have offset many short-term memory problems with sticky notes, calendars, digital memos and locator gadgets tethered to my phone, I have come to realize that today’s short-term memory losses are tomorrow’s memory holes.
Just recently, some blissful Facebook photos of dear friends at their wedding 44 years ago prompted me to post my observation that the cute young couple looked like they were having fun. “You were there!” the former bride quickly replied.
Another day with dementia, another memory hole to be filled with help from my wife.
Barbara reminded me that we were expecting our first child when we drove about 900 miles from Philadelphia to St. Louis to attend the wedding. Later, we joined family and friends accompanying the newlyweds on their camping honeymoon in the Ozark Mountains.
My wife remembers campfires and barbecues and frolicking in her maternity swimsuit in an ice-cold river. She also recalls with a smile the frigid nights in a communal tent when our friends and I slept in a circle around her to make sure that she and our yet-to-be-born son stayed warm.
I have no recollection of those events. I now know the story, but the experience is gone. Memory holes leave nothing to help you imagine being back in the moment. Stories that no longer exist in my memory are like movies about someone else’s life.
Even photos of me from past times don’t prompt any recollection. I simply cannot remember being there, despite the images. Nevertheless, I have come to treasure the stories about times I have forgotten, and I make an extra effort to remember them. Sometimes I succeed.
“Hold on to what you can,” urged one reader three years into his Alzheimer’s journey. “I have forgotten so many things now. . . . I don’t know so much anymore. My memory just slowly stopped working.”
The dementia demon strikes at will to constantly remind its targets that they are afflicted. I mostly try to ignore my ailment, but everyday conversations constantly remind me.
On a recent visit to my daughter’s family, her father-in-law spoke of an abdominal disorder that had hospitalized him. I sympathized that I had the same problem, but that it had never gotten as bad as his. Barbara kindly corrected me, noting my three-day hospitalization with the same ailment a few years ago.
More recently, I asked our granddaughter if she had ever been to the Oregon town where my daughter resides. It turns out she had been, with us.
To avoid future memory holes, I try to think of current experiences in terms of their significance to me in hopes of spawning their retention. Thus, a routine lunch with grandchildren becomes the lunch when our granddaughter, replying to a question of where she was going to be in 10 years, simply said, “I’m going to be rich.”
I admit there are moments when I get depressed. I sometimes have a mental image of standing within a circle of dark curtains slowly closing in on me; or of standing on the tracks with arms extended to hold back the short-term and long-term memory trains from colliding and leaving nothing. These thoughts have brought me to private tears.
Then reality kicks in and I am reminded of how fortunate I am to be living a very comfortable existence with a magnificent family, loving friends and few other serious concerns.
Many exciting and fulfilling memories from an adventurous life still remain: Caring for our rabbits, my horse and the animals we raised for food when I was a youngster; my first car and first girlfriend; meeting the love of my life and our subsequent wedding; our children’s births; journalism adventures; and so much more.
Others are far less fortunate.
“It’s a very cruel disease,” wrote a reader who, at 60, anxiously anticipates becoming afflicted with Alzheimer’s disease like several others in his family. “Losing memories of people you love, and feeling your thoughts vaporize, is so hurtful. I walked with my mother all the way through the disease. I learned so much about life and how quickly time escapes.”
Many readers shared their methods of coping with the insidious malady. One said he tries to continue his old habit of meticulously writing everything down the way he always did before retiring as a telecommunications engineer. “I still try to document everything for future reference, but my brain’s memory isn’t there. Today’s problem is that even though it is documented in a text file, I can’t find the documentation!”
Another noted that she has created routines for her husband to follow to perform necessary tasks, from brushing his teeth to getting dressed in the morning. “I labeled the toothpaste and soap, and that seemed to help his confusion,” she said.
The best advice came from a 93-year-old woman living in a Carmichael facility. “These are not the best years of our lives, but we have to get through them. Be nice to yourself. Treat yourself to as many special things as you can . . . a box of candy, an ice cream cone, a pretty vase, a piece of pottery. Keep reading. Keep walking. Try to remember things. You have to try. So, Kent, just keep moving.”
Her guidance mirrors an observation my neurologist made a few weeks ago at the end of my exam. “You’re getting on with your life, and that’s good.”
But my favorite response came from a friend of my daughter-in-law. “Let him know I love his writing. And I’m OK if you have to tell him that over and over.”
Frances Kakugawa, a native of Kapoho on Hawai‘i island, was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease.