By Frances Kakugawa
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
I’m not a caregiver, but will probably need one in my old age. Is there anything I can do now to not become a burden to my children or husband?
How wise of you to have such foresight. Yes, here are a few suggestions.
On Promises: Do not ask your family to make promises for the unknown future. Many caregivers live with remorse and guilt when their loved ones need to be placed outside of their own home because of promises made, such as: “Promise me you won’t put me in a nursing home.”
We cannot foresee the future. Oftentimes, nursing facilities become the only alternative due to the condition of your loved one. To leave your voice, saying you want to always remain at home may create additional grief and guilt for your family members. Why not lessen the trauma of putting you in a nursing facility by giving them permission to do whatever seems right and appropriate?
We need to be openly free and unafraid to discuss these possibilities before care is needed.
My mother and I had this conversation often in a very playful way. Yes, discuss this in casual conversations to ease the way into a subject that is a natural part of life.
Okasan: When I get old, just put me in a nursing home and you don’t need to visit me.
Me: Naah, I’ll take care of you at home. If you’re nice, I’ll give you nice warm baths. But if you get nasty, I’ll hose you down with cold water in the garage for your baths.
Yes, we teased and laughed a lot about her later years, but the message was clear: She gave me permission to put her in a nursing home, and when the time came for that placement, I recalled with gratitude, those conversations. And it was very OK for both of us.
I waited until I knew I could no longer care for my mother at home because of the demands being made on both of our bodies by the disease.
Do not think of yourself as a burden. As caregiver Genie Mitchell of Sacramento wrote in one of her poems:
. . . this is not sacrifice.
It is just reality.
I am really living
In a way I have never lived before.
I am living love.
— From “Breaking the Silence”
On Funerals and Services: It relieves family and friends to know your wishes in advance. Do you want to be cremated? If you wish to have services, name the church of your choice. I know of people who have made all of their arrangements, right down to catering services. One creative woman had her own funeral services while she was still alive — it was a celebration of her life among family and friends.
A friend had a good-bye dinner with his mother when she was still healthy. They went to her favorite restaurant and agreed that it would be all right if one could not be there at the time of death. They made a toast to their love and commitment to each other. So, years later, when the son became his mother’s caregiver, whatever needed to be said had already been said.
As you can see, many conversations are needed to help make our transition easier on our caregivers and survivors.
On Advance Directives. If you have not made an advance directive, I strongly suggest that you get this done. An advance directive is a written statement about your future medical care. It is a gift to family members and friends so that they will not have to guess what you want if you can no longer speak for yourself.
These two websites can give you more information on health directives. If you are unable to go online, their phone numbers are included.
- Elder Law Program, University of Hawai‘i William S. Richardson School of Law: http://www.hawaii.edu/uhelp/. Phone: (808) 956-6544; and
- Kökua Mau, Hawai‘i’s hospice and palliative care organization, is a nonprofit community benefit organization based in Honolulu: http://www.kokuamau.org/resoureces/advance-directives. Phone: (808) 585-9977.
POLST — Physician’s Orders for Life-Sustaining Treatment — is a physician’s order that gives patients more control over their end-of-life care. It specifies the types of treatments that a patient wishes to receive towards the end of his or her life.
The Kökua Mau website has the updated Hawai‘i POLST form that was amended during the 2014 legislative session. It can be downloaded at http://www.kokuamau.org/professionals/polst.
A video on end-of-life care made by Kökua Mau is also available on this site. My mother and I appear in it — http://kokuamau.org/resources/dvdvideos#preview.
Here’s a little background story on the making of this video. The staff at my mother’s nursing facility was told that we were coming to do this video. When we arrived, the aides had painted my mother’s nails bright red and her face was made up like a woman of the streets. We had to scrub much of the makeup off and find alcohol to rub off her nail polish. They even had a tiara in her hair. They saw her as a movie star. I was deeply moved at what the ladies had done.
A PARTING THOUGHT
I was sitting in a waiting room for an appointment, when an elderly woman two seats away looked at my red shoes and said, “Those are nice shoes. I always wanted a pair of red shoes. Once I saw this tall and very attractive woman walk in her red shoes and, gosh, she looked so beautiful.”
The elderly woman was sitting in a wheelchair. I looked down at her shoes — she was wearing white socks and a pair of Coach shoes with shoelaces neatly tied in bows.
“I know what you mean,” I said. “I saw a woman once who looked so good in red shoes that I went out and bought myself a pair. I now have a few pairs of red shoes in my closet. I think you ought to have a pair of red shoes. Why not? Where do you go shopping?”
“I used to go to Nordstrom, but I can’t drive anymore, so I order things from catalogs. I always wear Coach shoes.”
“Coach shoes are very comfortable, but their colors are pretty conservative, don’t you think?”
“Yes, they don’t make those pretty red shoes. Maybe I can order a pair from some catalog.”
“There are some nice shoes at Arden Fair Mall. There’s the Designer Shoe Warehouse close-by, too. With shoes, you may want to try them on because they differ in sizes and you want them to be comfortable.”
“Well, it’s going to be hard for me to try shoes on because I can’t drive. But those red shoes are so pretty.”
She kept admiring my shoes.
Our conversation was interrupted by her husband, who came to wheel her out the door. As they went out the door, I said, “Get those red shoes now.”
Her husband looked at her, frowning, and asked in a gruff voice, “What red shoes?” She didn’t say anything.
I wanted to tell him that when a woman reaches her age and yearns for a pair of red shoes, she darn well deserves someone to drive her to a shoe store and have her try on all the red shoes so she can find one to her liking. A pair of red heels would make her wheelchair invisible, and she will be dancing again.
Men . . . know this about red shoes and women: There is something about red shoes that spells “forbidden fruit,” and sometime in our lives, we want that fruit. Even at age 90.
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.