Day 133 (note)

Friday October 3, 2013
I will write about today later, though (s far) there is nothing in particular to write about.
I did mention to the CNA this morning about the weepy spell yesterday.  She recommended I call the nurse, because they might possibly prescribe something.  I called hospice and left a message, and the nurse called me back very quickly.  I explained my concerns that maybe I was wrong to have stopped the Paxil.
Her response was that the emotional turmoil is a natural progression connected to his kidney disease.  She has said things similar to that before, but it didn't particularly register until now.  I've been just assuming that as long as the dialysis goes OK, the ESRD is "under control".  Plus, all the labs that the kidney center keep doing always apparently come back with acceptable values.  
I'm really confused, and frustrated because there isno one to ask questions.  I am going to try to look up some information; but with my poor vision, that's going to be very difficult.  I have been told that no matter how well the PD goes, it can never filter 100% of toxins out of the body.  That means that over time toxins can build up and eventually cause problems.  When I asked, it was confirmed that that meant he will at some point get another peritoneal infection.  No matter how well I keep to sterile conditions with setting things up, it will happen.  It never occurred to me that it would become expressed in other areas - like emotions, contributing to confusion, etc.  It's a bit frustrating.  So many things are attributed to the kidney disease, but hospice doesn't deal with that because he's on dialysis.  And while his lungs are definately failing, there's no way to tell how quickly that is happening (no more clinic visits means no more boncoscopies, no more function tests, etc)
I can't even go back and edit what I've written, so I don't know how well I'll be able to research.  Just what symptoms should I be aware of in connection with the progression of his kidney disease?  The hospice people can't deal with it since he's on dialysis.  If I stop the dialysis he'll die.  (and DSS would probably, rightfully, accuse me of murder).  It feels so frustrating that what is making him worse (maybe) is the one thing hospice can't deal with.  I don't know what I should/can do.  If he does get another infection (and honestly, I'm sort of surprised he hasn't - it's been  more than 7 months since he was last sick, and that seems a long stretch for him), there will likely be another sharp decline in his overall health (meaning it could also accelerate his lung failure) as well as another slip downward in his mental status.  It's hard to be prepared to deal with something without having any idea what or when.