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Dear Frances,
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?
Helen
Kaua‘i
Dear Helen,
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.
Laughter.
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.
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.
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.
- Elder Law Program, University of Hawai‘i William S. Richardson School of Law; Phone: (808) 956-6544
- Kōkua Mau, Hawai‘i’s hospice and palliative care organization, is a nonprofit community benefit organization based in Honolulu; 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 Kōkua Mau website has the updated Hawai‘i POLST form that was amended during the 2014 legislative session.
A video on end-of-life care made by Kōkua Mau is also available on this site. My mother and I appear in it!
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.
Take care,
Frances
Wonderful! Looking forward to reading all your columns. :)