Frances H. Kakugawa
Hawai‘i Herald Columnist
Omoiyari . . . Think of others first and good karma will return to you. — Frances H. Kakugawa
I have turned into a broken record, repeating over and over the value of support groups. As you will see from the following conversations, caregivers oftentimes possess a wealth of knowledge. The following is a conversation that was held among members of my support group — entirely by email. It began with Bob in Sacramento sharing information on his wife’s condition.
Dear Frances and Caregivers,
Yesterday, Fran abruptly leaned to her left and was about to fall out of her wheelchair. This has happened before, but this time it appeared more severe. It was about dinnertime and she would not accept any food or drink. She had a good lunch and had something to drink during lunch. When it was time to get her into bed, she was dead weight, unable to stand to help me change her underwear. She normally would help me by rolling side to side, but she couldn’t do it this time.
In addition to being completely listless, she no longer responds to simple questions, like are you hungry? Her body language is almost nil, except when I hold her hand and she firmly grips my hand.
Today, I could not get her to eat or drink anything except late in the evening when I was able to get her to drink two small glasses of juice, but no solid food. She was running a temperature of 101 degrees. We (me and my granddaughter, the nursing student) called and talked to a physician. After talking with the doctor, the possibilities are: 1) a stroke; 2) Alzheimer’s deleterious progression; and 3) an infection.
Tomorrow I will pick up some antibiotics, which will take care of Item 3, but I know nothing can be done for Items 1 and 2. My guess is that this is Alzheimer’s following its ruthless trajectory?
No, take her to ER immediately. Something is going on with the fever and the drastic change in movements. She could be having all of the above, including UTI (urinary tract infection). This happened to my mother when I was caring for her. Tell your physician to stop treating her like an Alzheimer’s patient . . . Treat her like any other patient who has a fever.
Bob took her to the emergency room and then emailed all of us in his support group:
Fran has a bad case of UTI, which, in turn, caused a rise in temperature, which, in turn, led to a higher heart rate, which, along with her Afib, caused a stroke. Which is what the Kaiser doctors think happened. She has a weakness on her left side and does not move her left arm much, and she doesn’t eat or drink. She is being nourished with IVs. She is being treated with antibiotics and her temperature is coming down. She was visited by a speech, occupational and physical therapist and a neurologist. CAT scan indicated slight difference from earlier scans so stroke was probable, but not confirmed. Eating will be dangerous for her because her stroke makes it hard to swallow and food may go down the wrong pipe and cause pneumonia. She will only eat ice cream. What else can I feed her?
Keep feeding her what she will eat. If she enjoys ice cream, keep feeding her that. You may want to make fruit smoothies. Looks like she’s enjoying the sweets. Did she have her swallowing diagnosed by the pathologist to see exactly what the consistency of her food ought to be? Call if you need help.
The following came from a caregiver:
I gasped when I saw your first Thanksgiving email, but after reading further, was encouraged to see the wisdom and support you received from the other caregivers, and to see that you were able to have your Fran properly seen, diagnosed and cared for in the ER.
I know all of this is so hard, with the weight of your world on your shoulders. So much of caregiving is tedious and repetitive, and then, suddenly, in a matter of moments, our whole world tilts in ways we don’t expect, but must adapt to. I hope you know that you are adapting, you are taking care and you are loving in the most active sense of the word.
I have been through the not-swallowing problem. I found that the speech pathologist who came from the home health agency was really, really helpful. Some of her suggestions were counter-intuitive to me until she explained them in more detail. For instance, the speech pathologist recommended a different wheelchair! A person may need support for her head and neck, as well as her weakened side to help with swallowing. Also, lying in bed is not so good for proper swallowing; a person can easily get her own salivary secretions down her windpipe that way. If Fran is not receiving regular home visits from a good speech pathologist, please request this service. It is covered by Medicare, so your physician should have no reluctance to authorize it.
Here are some of my tips for dealing with dysphagia: I agree with Frances. If Fran will eat ice cream, let her eat ice cream! Water may be especially difficult for her to get down the right pipe. If the speech pathologist hasn’t already told you, you can use a powder called Thick-It — which seems to be basically cornstarch; so much for good nutrition — to thicken liquids like water so that Fran can swallow them. The hospice/home health people have the wherewithal to bring a can of Thick-It to your house, so you don’t have to go scouting around for it.
If you keep wearing out your blender, another possibility is a food mill. Easiest place to get one: baby stores/departments, including Amazon’s! (Food mills are commonly desired by new mothers who have pledged to make all their own baby food.) The small food quantities you probably need are sometimes easier to do with a mill rather than with a blender. Plus, the pathologist will probably tell you what level of thickness the food should have. Blending or pureeing doesn’t necessarily result in the appropriate thickness for the individual’s swallowing problem.
As for nutritional supplements such as Ensure, I was told that the most popular flavor, oddly enough, was butter pecan. I tell you this because as my mother’s Alzheimer’s progressed, she became more and more enamored of ice cream. And she loved butter pecan Ensure and would not so readily ingest any other flavor. (She also pretty much scarfed down her crushed-pill-laced instant chocolate pudding every night.) All I mean is that things that might not otherwise appeal to Fran may be worth a try. Also, you can have Ensure delivered by the case from the nutrition supply company. I always spoke with the same person there, and despite the fact that my mother had Medi-Cal as her payor, the service was personalized. I got the number off their refrigerator magnet (still stuck to my refrigerator), but unfortunately, I don’t still have the helpful person’s name.
I hope my suggestions are helpful. My heart is with you.
Soon after exchanging emails with Bob, I ran into a friend, Ellen, and her husband Bruce in a coffee shop.
“Bruce has been having very bad days with his memory,” Ellen said. “I called the doctor and he said to stop the Aricept. I asked about Namenda, but the doctor said ‘No.’ I’m at a lost.”
“Ellen,” I asked, “Was Bruce diagnosed at all? Could he be having UTI? Is he hallucinating? If he hallucinates, it could be symptoms of a different kind of dementia, which will need some other medical treatment. I would suggest you take him in to ER if doctors are diagnosing through telephone calls. Insist on a gerontologist.”
Readers, this has become a sore spot for me as I hear how our elders are not receiving the medical help they need. I will address this issue in another column.
Until then, here’s a story from Scott of Maui. His 90-plus-year-old aunt in Kansas fell just after getting up in the morning. Her bathrobe and hair looked disheveled as her husband called 911. On their way to the ER, her husband grabbed their wedding picture and later showed the photo to the attending physician.
“Doctor,” he said. “Please treat this woman that you see in this photo, not that woman there on the bed. This is who she is. Please.”
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.