CAREGIVING: When we last checked in I was told Kathy was “declining.” That episode was probably related to medication issues – Atropine, in particular. By the next nursing visit, her vitals were pretty good.
Unfortunately, caregiving is a rollercoaster. What goes up doesn’t keep going up. Each up is lower than the last up.
You are lucky if you level out for a day. Or two. Huntington’s Disease guarantees that this ride will stop when it wants to stop. Right at the moment (I mean right now) Kathy is okay. It is a constant learning process and adapting to what she needs to be comfortable. Different things happen on different days and different nights. A little bit too much of this; or not enough of that; or waiting too long between this or that can make an uncomfortable difference.
Bedsores and catfights: Kathy developed her first bedsore about a week or so ago. It was on one of her butt cheeks. It wasn’t terrible: The outer skin layer was broken. Shannon, our hospice nurse said, “it happens,” and it wasn’t anything we did. “Kathy has the best skin of any of my patients.” I couldn’t understand how she could get it except that I don’t really change her position every two hours like I am supposed too. She is on an air mattress overlay. It inflates and deflates alternating rows to change her position every few minutes.
There has been an ongoing dispute going on between two of Kathy’s favorite health aides. Peg and Emily have some sort of bad blood between them, and Kathy’s new bedsore was an opportunity for finger-pointing.
We use a maxi-pad as a liner inside two pairs of pull-up briefs. It absorbs more of Kathy’s urine to keep her more comfortable. The pad has a peel and stick, self-adhesive strip that is supposed to keep it in place. Peg uses the strip, but Emily doesn’t. Emily feels that the glue gets stuck on Kathy’s skin and hair when she moves around. She likes to use a lot of zinc barrier cream (Balmex) to protect the skin and hold the pad in place. Peg says they wouldn’t put the strip on them if they didn’t want you to use it. She thinks that is why it happened.
I got caught in the middle and it was a pain in the butt: mine, not Kathy’s. Emily went as far as to notify the agency that she wouldn’t work the afternoon shifts to avoid a conflict with Peg coming in at night. She admitted that when she found out that Peg was already working with us she was afraid it wouldn’t work out. And Peg said if I was unhappy with her work I could request a different aide. Everyone does things a little differently, and there probably isn’t a right or a wrong way to put on a maxi-pad. (Correction: a damn maxi-pad.)
By the way, the bedsore is all butt healed (pun intended). Shannon, our nurse showed us how to dress it with a smaller pad held on with Balmex (kind of like the way Emily pastes the big pad on). The real culprit was not the pad at all. It was the air mattress. When we changed the fitted sheet it crimped the air hose that alternates the air pressure. That meant that the air pressure stayed high and never changed. It was as if Kathy was sleeping on a board for several days and nights.
New noises/New sounds: For a week or so Kathy seemed to be groaning or singing. She can’t really speak anymore, but she was humming and grunting. Sometimes it seemed like she was trying to tell us something. Other times it seemed as if she was in distress of some kind. Shannon was trying to listen to her lungs, but it was hard to hear when she was making sounds. She also felt like Kathy was working pretty hard to breathe. The rhythmic groans made me think it might be another motion symptom like her hand shaking: part of Huntington’s. Shannon said it could be anything, even constipation (more about that in another post).
Morphine: When Kathy entered hospice we received a “comfort Pack” of meds to keep on hand. I have used quite a few of the medicines: Tylenol suppositories, medicines for phlegm, stool softener and nausea.
But I was afraid of morphine.
I think I was probably more afraid of the idea of morphine than the reality. I remember my mother and father getting it just before they passed. It is the only medicine in the pack that is for “shortness of breath.” I was nervous about starting it until I talked to the nurses, read more about it online and learned how to use it. I give her a tiny dose of it under her tongue when she is struggling. It relaxes her breathing and her oxygen saturation goes up. We seem to use it some evenings. And it doesn’t seem to knock her out. I bought a little pulse oximeter from Amazon so that I could keep track of how she is doing.
Starting Oxygen: A few days later we decided to order oxygen for Kathy. The hospice was just waiting for me to give the word. I think I was avoiding that too. Kathy was already attached to a feeding tube and now she would have a tube in her nose. But I see people driving with oxygen and shopping with it. My mom had a long extension tube that let her move through her apartment. It got tangled a lot but kept her independent.
The medical supply company delivered an oxygen generator and showed us the basics of how to use it. It is about the size of a dehumidifier and at least as noisy. I’m getting used to sleeping with the sound although sometimes it is hard to hear the coughing in all the other sounds.