Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
Dear Frances,
It looks like I’m going to be caring for my mother soon. I would appreciate any advice you can give me.
Frank
Honolulu
Dear Frank,
It’s very commendable that you are preparing yourself to become your mother’s caregiver. Here are a few general suggestions.
It isn’t too early to join a caregivers support group at the Alzheimer’s Association office or with any organization that has such a group. Listen to the caregivers’ stories. Their loved ones will be at different stages of the disease, so this will give you a general idea of the progression of the disease. Bear in mind that each person is different, so know that the experiences you and your mother are going through may be different from those of the people in your support group.
Take one day at a time. It won’t be easy. A lot will depend on your frame of mind and your own personal commitment. You may even want to visit someone who’s caring for a woman or visit a facility where loved ones are in residence.
The following directors at Alzheimer’s offices in Hawai‘i are there with open arms to help you connect an appropriate support group.
• O‘ahu: Pamela Scott, (808) 591-2771;
• Big Island: Chris Ridley, (808) 443-7360;
• Kaua‘i: Humberto Blanco, (808) 245-3200; and
• Maui: Lynsey Capone, (808) 242-8636.
When we become caregivers, we return to the home as homemakers and need to take on roles that were traditionally believed to be women’s roles. There’s cooking, shopping, cleaning, feeding, dressing and taking total care of another person. Caregiving returns us to all of this. On a playful note, if you were raised as a “samurai son,” it may be time to get to know the kitchen and the laundry room. Get acquainted with the vacuum cleaner and learn to physically care for another person, for starters. These are some of the physical demands of caregiving.
The following are conversations I had with two men caregivers. Their concerns are on the more personal and private aspects of caregiving. There is no gender difference when it comes to being a good caregiver. Stay in touch and send me your concerns. I assure you that someone will have answers and/or solutions.
Take good care,
Frances
Dear Frances,
Am I doing this right? When I give my mother a bath, which I do daily, I let her lean against the shower wall and I use a large car sponge to clean her “down there.” When she’s on the toilet, I help her use toilet paper. What do you think?
Bill
Honolulu
Dear Bill,
You make me smile. OK, Lesson #1: “Down there,” or whatever you call it, has a name. OK?
You need to relax and just think of her private parts as part of her body . . . like her hand or face.
A sponge or even a regular washcloth may be too harsh and could break her skin. Look for a soft washcloth. Also, regular soap can be harsh. Ask the pharmacist for a soap that’s good for sensitive skin. Scented soaps or baby wipes may contain chemicals, so use the plain, unscented ones.
Bathing a woman can be a delicate process, so I suggest you seek advice or help from other women, such as a home care nurse, a caregiver or a woman friend who knows your mother. To avoid falls and other accidents, showers or baths require different positions, so ask your physician for references. You might also consider getting a shower chair so your mother can sit while you bathe her.
Keep in mind that regular toilet paper, too, may be too harsh, so try unscented baby wipes.
Girls are taught early in life to clean from the front toward the back to avoid infection. If your mother’s private parts have a strong odor, she may have a bladder infection. Alzheimer’s and dementia patients, and the elderly in general, are very susceptible to bladder infection and will require medical care if they develop an infection. There are other symptoms for bladder infections.
You are doing the right thing by cleaning her private parts every day. I know you feel uncomfortable about all this — that is understandable. If you feel uncomfortable, your mom may pick up on those feelings.
When I gave my mother a bath, I carried on a conversation with her and teased her. We laughed and talked, and bathing became secondary to our conversations. Singing helps, too.
Above everything else, be mindful of your mother’s dignity. Sets, who cared for her late husband, shared this in my most recent book:
“The most difficult part of being cared for is the shame and the burden I have become to my son. The shame of knowing you need help in taking a bath or shower or using the bathroom. It shames me so much to have my son see me like this. I think of how Patrick must have felt when I had to assist him with his personal functions.”
Take care,
Frances
Dear Frances,
We met at one of your lectures on O‘ahu. I wasn’t a caregiver then, but I am now. You made a great difference in my life, so thank you. I’m caring for my wife and am using many of the things you talked about regarding keeping the dignity and compassion. So far, so good.
Kiyoshi
Honolulu
Dear Kiyoshi,
I remember you. You sat in the front row and later told me, “I can hardly wait to become a caregiver. I can do this. I read your books, so I’m pretty sure when my wife needs a caregiver, I can take care of her with all this compassion and love you mentioned. I think that will make a difference. I’m glad I came here today.”
Your letter got me thinking. Many caregivers attend my lectures, and my books on caregiving are being read by caregivers. I would like to see more of people like you in the audience, people who are not yet caregivers. You were wise to prepare yourself for the inevitable with some internal dialogue and mindset before caregiving became a reality. I’m sure this lessened the sudden onset of feeling helpless, fear and discomfort when your wife needed care.
I know you became a caregiver more than a year after you attended my lecture. Hawai‘i is a small world — your sister told me what an excellent caregiver you are. Thank you for starting this conversation.
Many of us were so unprepared to become caregivers. Here, Elaine Okazaki describes it best in one of her poems.
CHANGE
Where did it come from?
It began with one phone call
At 9:45 p.m., June 27, 2001
From Mom who identified herself
As Natsuyo, instead of Mom.
She had fallen, taken two hours
To crawl from the foot of her bed
To the nightstand for the telephone.
A rush to her home,
I find her in her bedroom,
Lights on.
A call to 911,
ER until the wee hours of the morn.
Finally to a vacant lot
Where I back my car into a pole.
Where did it come from?
This pole in a vacant lot?
Yes, where did it come from?
My lifestyle of art lessons,
Movies, restaurants,
Docent at the Japanese Cultural Center . . .
Immediately changed
With one phone call
From Mom who called herself
Natsuyo.
— Elaine Okazaki
(From: “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving)
Sometimes it arrives gradually, as explained by Red Slider, who cared for his mother. Whether it comes slowly or abruptly, there can be no total preparation for becoming a caregiver, so we do the best we can.
APPOINTMENT DAY
It was an appointment at a clinic that began my journey with Isobel into the dark side of life’s fragilities. It was on that day that I first understood the puzzling scruff marks on the top of her shoe as we climbed the clinic steps and her dragging toe scraped over each tread.
Little did I know then what terrible burdens were hidden in such a simple task as keeping an appointment. For the next fifteen years I would sadly come to learn the horror of the word, “appointment.” But on that particular day (the first occasion on which I had ever accompanied Isobel on a visit to her doctor), it was just another appointment to see what was taking so long about diagnosing and treating some vague problem with her right foot and leg.
After that, there were inexorable waits as I followed along from diagnosis to diagnosis. What started as “drop-foot” progressed to “shin splint” and then to “pinched nerve” and onward and upward as “carpal-tunnel syndrome” until I finally could no longer sit idle and watch her “managed care” degenerate into “mangled care.”
That was the beginning of our strange journey down this rabbit-hole of medical appointments. Alzheimer’s wasn’t even a word in our vocabulary at that time. It would be another year before we’d turn to that page in the dictionary. But the word “appointment” was, and its meaning loomed ahead of us in ways we could never have imagined. It was on that day of our first unsteady climb up the clinic stairs that I mark as the day, unbeknownst to either of us, I signed on as Isobel’s caregiver. How could I have known then that I’d made an appointment that could not be canceled?
— Red Slider
(From: “I Am Somebody: Bringing Dignity and Compassion to Alzheimer’s Caregiving”)
Frances Kakugawa was her mother’s primary caregiver during her five-year journey with Alzheimer’s disease.
