Mar 30, 2014

March 30 - Muscle Relaxers and Hospice Frustrations

The muscle relaxers seem to be helping a little with pain management in addition to muscle relaxation, once we settled on one Gary would be able to tolerate and not decline further from. Downside is he is more tired.

It's been very frustrating over the past couple weeks. The urine sample I finally got on my own, after multiple unsuccessful nursing attempts stabbing him with catheters to gather a sample, did show an infection...and that was no surprise. He was initially only put on a 5-day Bactrim liquid, then on Day 4 he was still running a fever. After a string of frustrating and insulting events over Gary's fever with only non-narcotic Bactrim on the line, they added 5 days to the regimen (first and last interaction with nurse Judy). We are now on day 8, there is still debris/puss in his urine, he's still running a low-grade fever, and is saying it hurts every time he goes. The nurse and nurse practitioner are coming back on Tuesday afternoon, so we'll decide the next course of action then. I believe we're still ultimately working up to having him be sedated to keep him comfortable, though no one is educating me about their thoughts on that to help me manage his pain and discomfort, or if he's building up to a blockage, or what. So frustrating.

He's had several more very good, lucid moments. Most are now early evening until about 10 or 11. We've set up a CD player and he's been listening to all his old favorites, recognizing the artists and the songs. He's having some good light conversations with each of us and misses us when we have to be out of the house.

This is so frustrating and painful for all of us to go through. Still hanging in there.

I've made several suggestions to Hospice about educating their staff about his disease: about making sure they are aware of their patient's conditions before recommending any medications or course of treatment; about specimen collection methods when they can't give you an arrival time within a 3 hour time window; why a forehead temperature reading isn't accurate when your circulation is shutting down and it's a symptom of your disease, etc. UGH!!

I'm tired of being the one who has to point out what should be common sense. It's exhausting...

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