Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Funny (but not ha-ha funny) that you would bring this (February’s column on “To Help Us Make It Through”) up now about our loved ones who are no longer here. Just yesterday, the once-a-week mow-and-blow guy asked, “How’s your mother?”
I must have looked stricken because he immediately began back-pedaling, saying he thought I’d been taking care of my mother (and there we were standing on the wheelchair ramp still gracing the front doorway). Of course, I told him she had died a long time ago. I didn’t want to say how long and increase his embarrassment. So he began telling me about his grandmother and how she didn’t know him, but still knew the voice of his aunt, who cared for his grandmother. He concluded with how funny it is that she really loves ice cream now.
And the memories came flooding back. How Mom loved ice cream during her Alzheimer’s years with the thrill of a child deprived of this treat. When once I tried adding her crushed pills to ice cream, she knew immediately, and I never tried that trick again! Pudding for pills ever after. The guy and I were able to share a knowing laugh.
I, too, have had many times when I have wanted to talk to Mom or I’ve thought she is just in the next room. And some things will, it seems, never be the same without her to share them with — Christmas and other holidays come to mind — no matter what I try.
I am glad to have all of you to share this knowledge and emotion with.
Thank you for sharing this with us. I’m reminded of the first time I had to tell someone that my father had died. I was driving from Michigan to California a few months after his death. I was stopped at a road construction site in Wyoming and the friendly worker was so impressed that I was from Hawai‘i that he asked me what my father did for a living. I couldn’t tell him he had died. I choked on the word “died” and finally used the present tense verb to explain his work.
I wrote the following poem after my mother died.
WHAT IS DEATH?
When does a loved one truly die?
I look at her obituary
And it doesn’t seem real
To see the word “died”
Next to her name.
Do obituaries tell the truth?
I look at the list of names
Under “In Memoriam”
In Mosaic Moon,
I stop at the date of her death,
I read her name, Matsue Kakugawa
And I wonder, is she really gone?
I take a mental journey through
All the spaces she had filled
And question What is death?
Shouldn’t my mind, too,
Be purged of all its memories and images,
My heart of all emotional ties?
Shouldn’t death also occur
In these parts of me
That still feel her presence?
What is death?
— Frances Kakugawa
From “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving”
I can hardly believe my father’s been gone a year [on] January 16. I’ve wasted nearly a year hardly doing anything with the house except picking mangoes and running the faucets. The yard is becoming overgrown with weeds. When the mangoes were gone, our visits started bringing me to a place of unexpected despondency. I could only think about getting frozen yogurt at Yogurtland afterwards as a treat for showing up. My wife got rid of my mother’s clothes, even the dress worn to our wedding, and most of my dad’s. We’d go there every Saturday, and it would just make me sad, a feeling that would take an evening and a day to get over after we left. I realized my father’s house had become a mausoleum.
Daughter Jenny was back for a month during the holidays and whipped us into shape by helping us throw or give things away. I let her throw away my dad’s stacks of cassette tapes, which I could not do . . . they were recordings of Japanese songs for
karaoke. She wrote out a list of tasks by room and said we need to complete six items every month to be finished with the “small” stuff by June. Then I suppose there will be a new list of “big” stuff to do. A progress report is due to her every week. The plan is to rent out the house by 2020.
Jenny found a stack of black and white wedding photographs in a closet while she was here — Mom and Dad, mom’s lifelong friend Katherine and her new husband, now both dead, my older cousins and their husbands now in their 70s or gone. So much life, so much hope, frozen in silvering photographs. I riffled through a desk drawer full of old check registers and paid bills — the concerns and struggles of a vibrant life; now I let them slip from my fingers into a plastic garbage bag. I pulled my mother’s cookbooks off a shelf. The glossy coating on one of the covers disintegrated into thousands of minute specs and rained to the carpet like glitter. Yellowed newspaper recipe clippings fluttered to the floor like fall leaves. Jenny said to keep them; she’s not all business, just efficient, like a Swiss watch.
It’s harder without her here. Plus, there’s eventually going to be an assortment of miscellany, possibly sizeable, piled up in the center of the living room, I imagine, that must be kept, but has nowhere to go, the orphans of lives passed on.
I don’t think it was a wasted year. It was a year of processing the loss of your father. A year of coming to terms with living a life now without your parents. And the physical changes, such as cleaning the house, will come when you are ready. It’s difficult because there is a memory of life behind each item. There is no timeline. Your wise daughter is getting you started, which I’m sure is necessary because the house has been idle for a year. Note how slowly she’s getting you started. Smile and chuckle at how she’s taking you by the hand.
Appreciated your current column with notes about mindfulness. Think it would be very helpful for your readers to get additional exposure to mindfulness — stories from your caregiving readers would be especially interesting. It would be very relatable with your caregiving followers. I look forward to your next column. Take care.
James Y. Toyama of Mindful Hawaii
An excellent suggestion! I hope to devote part of next month’s column to our readers’ experiences with “mindfulness.” Readers, please send in photos or stories of your moments with nature, silence and meditation.
I am troubled by the many friends who no longer get in touch with my wife. It used to be that Fran was nonstop on the phone with her children or friends. Members of our church were the first to recognize and offer support; yet, as Fran’s dementia became more intense, the frequency of visits became less and less. Today, eight years after she began showing signs of dementia, only one daughter — her oldest — continues to visit and offer support. No one from our church visits.
If Fran were dying of cancer, would these same folks come and visit? When our minister announces a call for visitors for a hospitalized patient, it is followed by a qualification: “Please call prior to visit.” This protocol allows the patient time to decline a visit or reschedule a visit from multitudes of offers. On the other hand, someone with Alzheimer’s would welcome the help of a barker to bring in visitors. I find this disheartening and painful, especially because it is usually members of our extended family that are reluctant to visit. While I understand their fears simply because more often than not, most folks are uncomfortable being around someone with dementia, I find this explanation disingenuous.
Within my own extended family, young children are protected by their parents from the “strange grandma,” and at my church, my attempt at sitting Fran in the child care room was not accepted. My immediate family and my church are the two institutions that I would have expected to be the most solicitous of Fran’s well-being, but in this case they failed me.
I hope my suggestion in last month’s column of directly asking your children and grandchild their reason for not visiting Fran was of some help.
As for the situation in your church, would it help to discuss this problem with the minister? Perhaps a sermon would help members become aware of the life of caregivers. There must be many members with families who are in similar situations. Can your letter to me be printed in your church newsletter? To protect your privacy, you may even do it anonymously. It could appear as “The Lonely Life of a Caregiver,” etc., followed by a sign-up sheet of members who would appreciate visits from others. This may also apply to elders who are living alone in nursing facilities.
And Bob, I would include the Sunday School children. In Los Angeles, I saw a beautiful program where preschoolers visit a nursing home on a regular basis. The children were affectionate and loving toward the elders. They looked at picture books together, colored books together, and listened and danced to music together. There was so much joy. When the children left, they would turn around once more to wave good-bye. The next day, they ran into the room to greet the elders.
We are losing something of great value by isolating our elders from the younger generation.