Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
These poems were shared at our recent poetry writing support group for caregivers. Our discussions follow each caregiver’s poetry.
I am sad because my sister-in-law is terminally ill
I am sad because my son has stage IV cancer
I am sad because my two brothers are gravely ill
I am sad because my wife is in a vegetated state.
I am awash in sadness because I love.
I know sadness is the price you pay for love
and it is better to feel sad than not.
— Bob Oyafuso
Sometimes, writing poetry helps to filter out the raw emotions that are all consuming and raise us to a more philosophical level, as Bob has shown us.
As of this writing, Bob is visiting his family members, all of whom are ill, after arranging 24-hour care for his wife Fran. I have reminded Bob, as I have with other caregivers who take trips away from the ones being cared for, that should anything happen, it would have happened whether the caregiver was at home or away. It is not our absence that causes things to happen, such as needing trips to the ER or even death.
* * *
I already told you that.
Don’t you remember?
You turn left here.
No, your appointment isn’t today.
I don’t know where your glasses are.
Your granddaughter’s name is Audrey.
How could you forget?!
Toxic phrases spew out of my mouth
like a volcano, the pressure building,
The heat will be hurtful,
The fallout fierce, and yet
like Mother Nature,
I have no control.
— Sally Peters
Sally reminds us of the daily stress and frustrations of caregiving, which oftentimes rises to uncontrollable levels when set against our own “normal world” as the “reality.” As Sally points out, guilt and the negative feelings often follow for not having been a more compassionate caregiver.
Once we realize that our loved ones live in their own “normal” world, where memory no long exists, we need to enter their world. In their world, when they repeat a question, they are asking it for the first time. Can we answer each question in a tone and in language supporting this notion and omit reminders that something is so wrong with them? Responding with questions such as “Don’t you remember?” or “How could you forget?” is counterproductive. If frustration mounts, take a physical break — step outside for a few minutes and take some deep breaths.
We do have more control than Mother Nature.
In her poem, Sally tells us the value of writing poetry. We can be honest and uncensored. We can speak of all aspects of caregiving, both negative and positive, and in doing so, even the most dire can be transformed into an art form such as poetry. In her poem, the process of writing ends with her insight of all the fallout that follows. We are not born saints, so poetry like this makes us human.
* * *
Prior to Susan’s joining our group, she had 55 pages of haiku written about caring for her mother. “They started coming in October, kicked up in December through February, slowed considerably in May-June,” she said.
Here are eight of Susan’s more than 605 haiku poems.
Two mourning doves
and squirrel explore patio
Mom enjoys fresh air
She wants to go
to the patio; on the
way she spits up.
Already warm, we
sit in the shade. No talking
today. More spit.
She wants to go
back home. Rub her feet, she falls
asleep until lunch.
I can’t talk to Mom
as much as I wish I could.
But I sit with her.
I hope she knows I
love her. Loving a lifeless
form is difficult.
I do the best I
can and return home to write
haiku to process.
The wait for death is
painful. Too much time to think.
We wait for her turn.
— Susan Lee Roberts, Children’s book reviewer
There is so much discipline required in haiku writing. I have an image of Susan standing in the middle of a yard with a carpet of dry, fallen leaves, seeing her mother in her state of dementia. Susan selects certain leaves to help her make sense of what she is seeing and feeling. With those few leaves, she creates an art form instead of working up a sweat, raking the leaves, knowing full well that they will return with the next wind storm.
And now to the mundane . . . but very important mundane.
I’m sharing an experience in the hope that it will help you should you find yourself in a similar situation.
This concerns a prescription that I had planned to pick up at the CVS Pharmacy here in Sacramento. (In Hawai‘i, CVS Pharmacy is known as Longs Drugs.)
My doctor had prescribed Repatha to replace statin drugs for my cholesterol. CVS quoted over $100 a shot. I called Walgreens and they quoted $500 a shot.
I saw a Repatha commercial by AmGen on TV quoting $5 a shot, so I called the CVS Specialty. They said the price depends on your insurance. I have Medicare and Blue Cross (HMSA).
When I told them that I cannot afford over $100 a shot for Repatha, they quoted $15 a shot. Really? So if I had remained quiet, they would have charged me $100 a shot?
In the meantime, I took two sample shots and got bad reactions, so I called CVS Specialty and was told to stop immediately — and they cancelled my prescription.
A few days later, CVS in Sacramento told me that a prescription for me was sent to Hawai‘i. What?! I don’t even have an address in Hawai‘i. Furthermore, they told me that I will be charged if the meds are not returned in the same condition as they were sent. Keep in mind that Repatha must be refrigerated.
I insisted that I was not responsible for the drug since I had neither touched nor filled the prescription. I also reminded them that CVS Specialty Meds had cancelled the prescription. They still refused to accept my argument.
A short time later, I received two statements, charging me $30 for the prescription. My calls to CVS Specialty Meds were met with the same automated human answer. Finally, I decided to file a complaint with the California State Board of Pharmacy.
I then called CVS in Chicago and left a message saying that I would not pay for a prescription that I did not fill and that the California State Board of Pharmacy will be handling my concern.
I immediately received a call back saying they had retracted the charge. In fact, they called me “Frances” after just about every sentence — like we were best buddies. I informed them that the issue was more than the cost of the drug, and that the California Board would be pursuing it. Aha! The mere mention of the California State Board of Pharmacy caught their attention.
There is a Hawai‘i Board of Pharmacy that I found online — I’m pretty sure that every state has its own respective board of pharmacy. Here is contact information for the Hawai‘i State Board of Pharmacy: Lee Ann Teshima, executive officer; Phone: (808) 586-2695, Fax: (808) 586-2689, Email: email@example.com. You can also write to the board at: P.O. Box 3469, Honolulu, HI 96801.
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.