Frances H. Kakugawa
Hawai‘i Herald Columnist
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.
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Dear Frances,
Thank you for the two book titles in your March column. I truly enjoyed reading about those books. I learned a lot even without reading the book. Thank you.
Sue
Honolulu, Hawai‘i
Dear Sue,
Thank you. Your feedback helps me with my column. I’ll be reviewing another book next month, so stay tuned.
Frances
Dear Frances,
I tried out your suggestion of getting a medical student as a live-in caregiver. This is what happened.
He liked my room and he was OK with the exchange of free room for about 30 hours [of work] per month. He did not have a car, but he could easily walk about 1 3/4 miles to light rail to get to Sacramento. There was one glitch, so I had to turn him down. He was willing to do everything that I asked, except he did not want to clean Fran if she pooped, even though he did it as a caregiver before. Except for this one issue, he would have been a good fit.
I spoke to the two people on his reference list and they gave him very high marks for being a very compassionate person and congenial. One nurse I talked to said doctors do not like to touch patients — they are trained to analyze and diagnose.
I felt he would be a better fit for Mary (another caregiver in our support group), so I gave her his contact information. I hope those two can find common ground.
In the meantime, I have interviewed another person. She is a young woman who works for Home Health and previously worked in a senior living home, so she has caregiving experience with seniors. She is definitely interested in my room and I feel very comfortable with her, plus she would be a better match than the med student. I just got through talking to three of her references and I am satisfied that she would work out. She is also interested in becoming an RN (registered nurse), but has yet to start formal training.
Bob
Sacramento, Calif.
Dear Bob,
I hope that medical student is planning on becoming an optometrist! Sarcasm aside, since Mary’s husband is not incontinent, he might work out. I’m glad your story is having a happy ending.
Bob, I’m reading an excellent book by surgeon and public health journalist Atul Gawande titled “Being Mortal: Medicine and What Matters in the End” — I will discuss it in next month’s column. Please recommend this book to that young medical student. In fact, when you find a caregiver for Fran, Gawande’s book would be a must-read for that person, as well. If this book doesn’t humanize them, I don’t know what will.
I’m mortified by what the nurse told you about doctors not wanting to touch patients. I experienced that recently in a new doctor’s exam room. He sat in another chair and didn’t examine my very painful arm at all. All he said was that I needed to go to a sports medicine specialist, who did not have any openings for an appointment until two months later. The pain is now, I said, albeit to deaf ears.
Frances
Dear Frances,
I’m very grateful for our support group. Recently, my husband looked confused, didn’t respond and was unable to walk. I quickly thought “UTI,” (urinary tract infection) so I gave him water and later called the doctor, gave him the symptoms and asked for a prescription for antibiotics. We had discussed UTI symptoms so often in our support group that instead of panicking, I sort of self-diagnosed with the doctor, and I was right. Husband was back to his previous self in a few hours.
Sally
Sacramento, Calif.
Dear Sally,
Thank you for your good words regarding support groups.
Here’s a suggestion: I always kept a supply of those urine specimen containers at home for my mother so I could easily send a urine specimen to the lab for analysis if the doctor needed one. It saved a lot of time.
Frances
Readers: The rest of this column is devoted to caregivers whose stories demonstrate so much wisdom and common sense.
Cathy is caring for her mother-in-law, who has Alzheimer’s. She also babysits her 3-year-old granddaughter. This is Cathy’s story:
“My granddaughter is an excellent caregiver. My mother-in-law, for some reason, enjoys her closet. She is often found in her closet, humming, and it’s so great to hear such happy sounds. So, we took the door off and added sheer curtains so we can see her. We also added a piece of carpet so she can sit on something warm. Since she’s not hurting herself, we just let her be.
Now, our granddaughter joins her. We find both of them in the closet, happily playing with toys and doing crayon work. There’s lots of chatter coming out of the closet.”
When Cathy shared this story with me, I marveled at how she allowed the closet to become a place of refuge and solitude for her mother-in-law. How brilliant to think outside the box, to have added sheer curtains for air and observation and to allow her granddaughter to join Great-Grandma. It would have been almost predictable that I would have closed that closet door and as a result, denied her a self-selected personal space. Thank you, Cathy.
This next story is from Mary:
“Frances, I was at the bank when the caregiver texted me to return home. I called her and she was in panic mode, said Bob (Mary’s husband) had fired her and wanted her to leave. I rushed home to see what the crisis was all about.
A man had come to the door, asking for donations and Bob was ready to empty his wallet, so the caregiver stopped Bob and asked the stranger to return when I was home. Bob didn’t like that and threw a tantrum saying, ‘I’m in charge here. I can do whatever I want. You’re fired!’ And he insisted that the caregiver leave.
When I walked in, Bob had already forgotten the incident. I told the caregiver, ‘Next time, sing to him or give him a bowl of ice cream. These work all the time.’ She told me she had forgotten about ice cream and singing.”
Mary’s story reminds me that it’s a good idea to have these little “tricks of the trade” posted in a visible location for caregivers. Verbal instructions are oftentimes forgotten in times of crisis. Make a list for various ways to help care for your loved one and encourage caregivers to go over them every now and then.
This next bit of advice is from a physician to caregivers:
“When you accompany your family member in for an appointment, stand behind him or her so when I ask questions and their answers are not right, you can signal me without contradicting them. Shake your head and let me know that there is more than what they are saying. Or, write down your concerns and give them to the nurse before I enter the room. This way, we don’t discredit them and we’re still able to preserve dignity in the room.”
And, finally, a heads-up for May’s “Dear Frances”:
I encourage you to read “Being Mortal: Medicine and What Matters in the End” by Atul Gawande, so that when I discuss it in May’s column, we’ll all be on the same page. I especially urge families with loved ones in an assisted living facility or a nursing home to read Chapters 3, 4 and 5. Like me, you will want to put on a coat of armor and redesign these institutions in the name of humanity.
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.
