Day 131

Wednesday October 2, 2013
I felt like adding an "interim" report.  On a day to day basis, I'm just not seeing much change.  Some days are worse than others, but no dramatic decline.  
Last week the nurse did the 9 week re-evaluation.  Clearly there was no question of maintaining him on hospice.
Today she came for her weekly visit, and I got some encouraging news.  He can now have the CMA 5 days a week instead of just 3.  I don't know that we actually "need" her that much (the nurse said she could just give him a quickie wash up and not a full bath every day).  Apparently TPTB have decided that 5 days a week makes better sense than just 3.  I'm totally fine with it.  It's comforting to know someone will be here daily  ... I feel less alone.  No, that's not quite what I mean.  But it's just knowing someone with an objective point of view will be here more often - Another thing that was mentioned was the possibility of having a volunteer come in on a "regular" basis (a few hours once a week) to help me.  She was mainly referring to cleaning; but it occurs to me that a few hours one day each week, someone could help me with sorting so many boxes full of stuff that I can't read and tell what I need to keep or not.  That would be so good!  But I'm also putting less faith in that prospect.  Seems we've been on the "search for a volunteer" list for 3 months and nothing has turned up.  But I'm going to keep hoping - I know I was more tired this morning, and it probably showed.  My joints are giving me more trouble, probably from lifting him so much.  Lately he's been wanting to be up and down multiple tiems a day.  That's good from the standpoint of his level of activity; but really hard on my back!
Anyway, my point is, I'm happy for getting to have the aide 5 days a week, and a renewed effort to find a volunteer for a bit of help for me.  

The aide told me today I shouldn't be getting him up and down from the commode so much - just tell him that's why he has on disposable pull-ups.  Easy for her to say - she doesn't know him like I do.  I'm afraid he'd make himself sick trying to hold back.  Maybe there will come a time.  OK, probably, eventually.  But he's not there yet, and I don't think I can deliberately humiliate him just to make things easier for me.  Nope.  Not gonna happen. :(