I guess I don’t need to put CAREGIVING: at the start of my posts now. It is all caregiving for the moment. Music is still there. I practice guitar some before I go to bed and have been working on a few songs. That process keeps a melody in my head during the day as I try to find words that rhyme sorta maybe.
Friday was a ‘messy’ day. I won’t go into all the details, but let’s just say the Miralax kicked in. It made me wonder whether movies or television shows ever show this part of nursing, or health care. In Gone with the Wind (Kathy’s favorite movie) there are scenes of amputations and nursing and hospitals. And Scarlett and Prissy save Melanie. On shows like St. Elsewhere and House and ER something was always happening but the patients were all pretty clean. Unless I blocked it out. Even on Downton Abbey when Violet (Maggie Smith) is sick, Isobel, her cousin sits by her bedside for a few days and nurses her back to health. I reckon the messy clean ups were during pledge breaks.
I noticed that Kathy wasn’t sleeping well Thursday night because her hands and arms were moving around. I kept trying to ask her if she needed to get up but she never responded. She would be quiet for about 20 minutes, and we would both fall asleep. Then the bed would start shaking like a massage bed in a cheap motel, for another ten minutes. I’m sure she was uncomfortable, for obvious reasons. Friday morning I gave her a bed bath and got her dressed but she was really sleepy.
I didn’t have much luck giving her breakfast. Erica called and wanted to come by and check on her swallowing again at noon or so. I told her she was really sleepy but I thought it would be good for her to come since “I’ve got to get some food into her, somehow.” I said. I was hoping Erica’s energy level would be enough to wake Kathy up. A little later I received a call from the other VNA nurse, Christina. She wanted to visit between 12 and 1pm too. I woke up Kathy and gave her some juice. Then I took her to the bathroom but again too late. Another change of clothes and mini sponge bath and she would be ready for visitors. But back to sleep again.
Sleepy Swallow. Erica arrived and had about as much luck as I had getting her to eat or drink. In addition to the swallowing and speaking problems Huntington’s Disease patients have, she sometimes has trouble with simple things like using her mouth or lips. When I offer her a drink from her juice bottle (with a straw) there are times when she opens her mouth wide instead of puckering her lips to suck on it. So nothing happens. Sometimes I have to brush her lips with the nozzle of the bottle to give her a better sense of where it is and how to use it. Sometimes I take a little drink from it to show her. When I’m feeding her she seems to turn away from me a little and open her mouth on one side to accept the spoon of food. Not a big deal. Just interesting. Sometimes she just looks right at me smiling with her lips tight together. Again sometimes touching the spoon of food to her lips gives her a tactile clue. It can be tough to know whether she is full or not but she lets me know. There is usually room for some ice cream however.
Christina, the nurse, arrived later and Erica talked to both of us about how Kathy was doing. Basically, she was ‘discharging’ Kathy as a patient of speech pathology. She is stable and she is confident that I know what to do. She said as long as Kathy keeps going like this her condition is stable. When Kathy stops taking in food or liquids for days or maybe a week, then it will be time for hospice. But who knows when that will happen. Erica said Kathy could start to fail in a week or it could be six months or much longer. I asked if my goal was “Calories”: giving her as many calories each day as possible. She said “No, not really. Make her happy is your only goal. When she can and wants to eat give her whatever she wants.” She said Kathy is going to keep having good times and bad times so let her rest when she needs it and feed her when you can.” She also said that “She doesn’t need the calories you need, because she is sedentary. You are the one lugging her around.”
After Erica left Christina examined Kathy. The blood pressure cuff woke her up. I guess having a rubber bracelet squeezing the crap out of my arm would wake me up too. Her BP was pretty low so I was a little worried. “No, it’s right where it should be. She was sound asleep so it is bound to be low. All of her other stuff like oxygen and temperature were good. She checked the blister on her foot and was done. They will be visiting on Tuesdays and Fridays.
By the time she left Kathy was all rested. She ate a big dinner. And ice cream.