A Better Day

So today's the first full day with the Fentanyl patch off... and it seems to be helping. Mom no longer has the "freaked out" look plastered on her face all the time. It's almost like once she can sense the sedating effect of a medication, she tries all the harder to fight against it. That seemed to be going on the whole time she had the patch on. So she's been agreeable to having Ativan every 4 hrs around the clock, and even though it becomes pretty evident once we pass the 3 hour point because she starts to cry out and become more agitated, it seems to help her well overall. Mom had the healing touch people visit today. Their visit is usually a half hour but today she didn't want them to stop so they wound up staying for a full hour. They don't actually really massage her but they do very light touch that's mostly intended to relax her. That's really the best we can do for her right now is find things that relax her. She loves her music and pretty much has it on all the time. On the TV it's channel 833 and it's called "soundscapes"... it's just a music station that plays quiet piano music or nice soothing voices singing. Sometimes she'll ask for a movie on but she can't really focus on it or follow it. Sometimes she'll ask for the music station which usually helps her to fall asleep. When she's in her room, we have her ipod playing its "RELAX" playlist over and over again. It's a very soothing room, with the music and we recently put a little space heater in there to warm it even more. It tends to be a little chilly since the doors are usually closed. I think I mentioned the tropical beach towel hanging in the window which she never wants us to move. It's really something to see what kinds of things have become important to Mom since she's been stuck inside of herself unable to communicate. She has new attachments to things and very strong preferences about the way things are done and the things she wants around her. It must just feel like at least these FEW THINGS are predictable to her and within her control. I just can't imagine being so totally out of control.
While it's helped to remove the patch and Mom is able to be a little more calm, the trouble with her breathing and choking is seeming to continue. She's having a lot of trouble clearing her throat and we're still having to suction her quite often. She started wearing a patch on her wrist that's supposed to help dry up her extra phlegm and saliva, but it's hard to know if it's really doing anything or not. She's having more scary choking episodes... they're really just awful. She just has no strength in her throat at all. Even her mouth and lips are so weak that sometimes she can't close her mouth without help. Have you ever tried to swallow without closing your mouth? You need much more muscle than when your mouth is closed. We did talk today to the nursing supervisor at the hospice agency... we tried to ask her our questions about treating Mom's "pain"... be it mental or physical, and how do we know when is the right time to think about using morphine regularly? The nurse told us that "pain is pain", doesn't matter what kind of pain it is. She said to continue with the Ativan on the schedule we're on... and if it seems like Mom needs something more for either agitation or trouble breathing or pain, then to give very small doses of morphine every hour or every couple hrs. The trouble breathing is very scary... and I think it'll only get more scary. It feels very important to be prepared and to have thought out and talked about what we're going to have to do. Annie asked Mom tonight, in one of her "fits", if she feels like she's just "had it"... she asked if she felt like she was tired of fighting this fight... Mom gave us a very clear "no". She's absolutely fighting. She's is living the most courageous fight any of us have ever witnessed.