Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
My wife no longer talks, so I really don’t know what she’s feeling. She sits without watching TV — she just sits. Is she bored? How can I know, because when I ask her if she’s bored, she says “no.” But she says “no” to everything.
How sweet and caring of you to be concerned about how your wife feels. But here’s a question for you: Before your wife was diagnosed with Alzheimer’s and you saw her just sitting, did you worry about whether she was bored? Or did you feel comfortable about this quiet time that she chose for herself? What is the difference now?
Too often, once we become caregivers, we feel like we must always engage our loved ones in conversation or activities. Think about this: If your wife doesn’t show any sign of pain, she may be enjoying this time for herself.
How we use language often determines whether there’s a problem. Try this. Replace the word “bored” with “meditating.” My wife is sitting and meditating, or my wife is having some quiet time.
Try not to impose your own perceptions on how she feels.
When I cared for my mother, we didn’t have much conversation. She napped or watched TV while I sat and read or wrote. Oftentimes, she would open her eyes to see whether I was still there and then would return to her silence, which made both of us very comfortable. In fact, I think if I had filled the silence with chatter, she probably would have said, if she could, “Yakamashii.” Noisy!
Back to your wife’s “no” answers to your questions . . . She may not be able to process your questions anymore, so “no” seems to be a safe answer. Besides, she is still communicating.
You may want to “just do it,” as Nike says. If you know it’s lunchtime or dinnertime, instead of asking her if she’s hungry, just tell her it’s time for lunch or dinner and take her to the dining table. If you want to take her for an outing in nature, just do it by saying, “Let’s go outside for awhile.”
We may be creating anxieties in her if we ask questions at certain stages of the illness. Relax, Howard, you’re doing great. Go enjoy some quiet time yourself.
The following question came from Bob in my support group. He sent this through email to the whole group.
“My wife no longer walks or talks. I’m having problems brushing her teeth. Fran does not want to open her mouth wide. Sometimes I get her to open it, but not all the time. After I brush her teeth and give her water to rinse, she will drink the water instead of spitting it out. How did you handle this? Are there alternative ways for brushing her teeth?”
From Jill: Bob, when I couldn’t brush my mom’s teeth anymore, I bought a cordless Waterpik. It really works well and sometimes she would put her lips around it and swallow a little water, but there was no harm in that. Good luck with everything!
From Diane: Hi Bob! There is a dental hygienist who will come to your home to clean Fran’s teeth when she needs it. Her name is Jody Boothby and her phone number is 916-988-9767. My mom’s dental plan, Delta Dental, covered the cost. Good luck to you. My thoughts and prayers are with you.
From Dear Frances: Bob, I checked with my dentist and this is his advice: Dry-brush her teeth, which means use only water, no toothpaste, and let her rinse. If she swallows, she won’t be taking in any toothpaste. I hope this helps. Take good care.
This second question came from Bob: Can you tell me about how to avoid bedsores? My wife Fran no longer walks.
From Dear Frances: Bob, make sure that you don’t keep Fran in one position for hours. Keep changing her position, from being on her back to her sides. Let her sit up in bed or in her wheelchair. Use pillows to support her when she’s on her sides.
Give her body a good exam each time she takes a shower or bath. (When my mother was in a nursing facility, the head nurse made bedsore checks every few weeks. All residents had their clothing removed for this exam.)
Once a bedsore appears, be sure to get medical help. When a friend’s mother had bedsores, a home visit nurse came regularly to monitor it. This was arranged through her physician.
From Jill: Bob, I purchased wedges to keep my mom on her side and a special one to put between her knees/legs.
From Bob: Thank you for all your help. Am so glad I’m in your support group. This is why I’m not afraid to be a caregiver for my wife.
When I was a caregiver, the manual Hoyer Lift was the only one available to transport a person from the bed to the wheelchair, and it was often too strenuous for some of us. Bob sent the following update about mobility lifts that are now electronically made.
From Bob: When I investigated mobility for Fran, the obvious choice appears to be get a van and have a ramp installed to take her in a wheelchair and lock the wheelchair into the back of the van. I don’t like vans, and when a wheelchair is locked into place behind the front-row seats, you don’t get the benefit of airbags. Plus, it was important for me to have Fran next to me in the front seat.
After research, Milford lift seems to be the obvious choice. It had the advantage of a smart base option to move her from wheelchair to bed. The Milford Person Lift brochure gives a good description of how it operates. It does require the use of a sling to cradle Fran’s back and thighs, which is attached to the lifting arm.
Power for lifting comes from your car battery or, when in the house, a small rechargeable battery.
When I tried the sling, it felt snug, secure and comforting, and Fran did not object to being lifted by the sling.
With a push-button, you start the lift, and it is very smooth. After you are lifted above the wheelchair, the swing arm gives you the side-to-side motion to move Fran directly above the front seat and then just push the down button to lower her into the front seat.
I don’t know if Medicare covers it, but I will look into it.
I bought it locally from Sacramento. I’m sure it’s available in any part of the country. Google Milford Person Lift. There are illustrated brochures on-line. The mobility lift that I bought to move her in and out of the car works well and I had a chance to show it off at church today.
You are still helping others while caring for Fran. You are a blessing.
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, Calif. 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.