Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you.
— Frances H. Kakugawa
I think everyone should read your April column. That was very good.
Please walk the streets of Hilo and tell everyone to subscribe to The Hawai‘i Herald. Thank you for your kind feedback.
I have a question. Things are going as well as can be expected with my dad. We have great little conversations and time together, and tasks are slowly being taken care of with the recognition that things are in an almost constant state of change.
There is a lot to be grateful for. But, lately, I’ve been struggling with an almost overwhelming sadness. Sometimes I worry that it may compromise the strength I need to do the tasks to care of him, like dealing with house repair people, the yard, doctors and other medial people, appointments, medications, health issues, insurance, lawyers, caregivers, day care, taxes, bills, food, laundry, groceries, daily phone calls, emergencies, etc. Did you ever experience that deep sadness when you took care of your mother?
The sadness that you speak of never went away. Even when she was away from me at adult care or at the nursing facility, that sadness was deep within me. What did I do? I wrote, because writing gave me meaning. I went out into nature to find joy and life and sought out that feeling of awe at the beauty of nature, even in a blade of grass growing between a crack in the sidewalk. I accepted the fact that this was part of caring for someone.
Have you read the nouvella, “The Little Prince” by Antoine de Saint-Exupery? He writes about taming a flower, and once you tame that flower, it will bring you pain and responsibility. This is part of being human, so rejoice that because you are a loving son, you feel this sadness. There are others who do not know this sadness.
Here’s a look at that book I mentioned in last month’s column — “Being Mortal: Medicine and What Matters in the End” by surgeon and public health journalist Atul Gawande. My primary care physician, Dr. Lisa Ho, of the University of California-Davis Medical Center recommended it to me. At my last appointment, we discussed what dignity and quality of life means to our elders. To some, it might mean being free of pain; to others, it could mean being in bed without being soiled.
Dr. Gawande offers appropriate questions to ask someone before activating their health care directive. The patient’s answers may surprise you. Too often, we make choices for our elders when they are still able to voice their own needs and wants.
Dr. Ho and I talked about showing cards with various answers printed on them regarding a quality life to our elders. When shown these cards, our elders are able to select their own options. Their answers may surprise their family members. If reading is a problem, pictures can be used.
But back to the book, here are a few inspiring themes that shouted out at me. They are presented with real life stories and anecdotes.
1. We lost the best scenario for good elder care when we westernized our family unit. In the old country, the best care was given to elders living in multigenerational homes. I envisioned lots of sounds, laughter and movement in those households. So, what’s the next best alternative?
2. Out-of-home care works best when our elders do the selecting. There are chapters devoted to this process, with appropriate questions to help make this happen.
3. The book details how the original concept of assisted living facilities was created and how it deteriorated into nursing homes. Many states have returned to the original intent.
4. The appalling ways that out-of-home care has made safety its sole intent, ignoring the human aspects of our elders and thus compromising the quality of life, are well illustrated. This is where we see residents sitting in wheelchairs in hallways for hours. The most ideal scenario is detailed in this book. It took one doctor and one family member to bring about these changes.
5. Atul Gawande, a physician himself, described three types of physicians:
- The “Paternalistic Doctor.” This is the doctor who thinks he or she knows best — a traditional type of doctor who decides what is best for the patient. If there is a red pill and a blue pill, this doctor will say, “Take the red pill — it’s good for you. I have the knowledge and experience, and I know what’s best for you.” He or she may or may not even discuss the blue pill.
- The “Informative Doctor” is just the opposite. This doctor will give you all the facts. “Here’s what the red pill does, and this is what the blue pill does. Which one do you want?” It’s the “retail relationship” in which the doctor is the technical expert and the patient is the consumer. More and more is known about the science, and less is known about the patient.
- The “Interpretative Doctor” is what patients want. We want information and control. This doctor will ask: “What is most important to you? What are your worries?” When the interpretive doctor knows your concerns, he or she will tell you about the red pill and the blue pill and which one will help you most to achieve your priorities.
After reading this book, I began paying closer attention to my visits with doctors. Recently, I met a new doctor who was the informative type. She told me what tests were available and said it was up to me to decide.
Another doctor gave me all the information and guided me toward a specific test. Ah-ha, I thought! She is the interpretative one.
I’ve concluded that finding the right doctor is a lot like shopping for a new pair of shoes.
“Being Mortal” can become a life-changer in how we view our own mortality. I know it did for me. I strongly suggest that we give it to members of the medical field — medical school faculties, adult day care centers, assisted living and nursing home administrators, our council members, even our state legislators. Imagine this: A legislator receives 30 copies of this book from constituents. Isn’t the message powerful enough for he or she to read the book? Wouldn’t this happen in all of the above-mentioned facilities? This could lead to a rethinking and redesigning of medical and nursing home care for all of us that are based on humanity.
Impossible, you say. Keep in mind the words of anthropologist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it it’s the only thing that ever has.”
A group of women got together to read and discuss this book and, as a result, they all made a list of their own medical and end of life wishes.
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.