Day 189

Day 190
Monday, December 2, 2013
Random Note:  I started this blog mainly to track DH's journey through the hospice experience, and my reactions.  I know I occasionally get off track; but since I often feel overwhelmed and alone, I won't apologize.  This is my "outlet" for whatever I'm feeling.
After being rejected by 2 hospice agencies, we were quite relieved to be accepted into this one. (Side Note: Hospice of Wake County ... a non-profit agency).  One of the things we were told on the first day was that they had a huge number of volunteers who would be available for patients and/or the families/caretakers up to 4 hours a week, for anything .. including for the caretaker to just get a break.  This aspect was one of the reasons the dialysis center originally started pushing the hospice idea .. thinking it would be the only way we might get a bit of "help".  Well, we are getting help: the CNA comes 5 days a week.  She brings any supplies he needs that aren't provided by dialysis.  A nurse comes once a week, and she now gives him an epogen shot .. so we have been relieved of at least 3 trips a month to the dialysis center.  DH no longer has to go to any other doctor's office (although we are now having an issue with his original ordering doctor).   A social worker and a chaplain come by at odd intervals.
But.  There is NO volunteer help to be had.  I got a phone call yesterday afternoon from the coordinator.  She asked if I still needed help with some things. Really??  I've gotten NO help, and she's asking if I still need it?  And she pproceeded to tell me there is no volunteer service available for us.  It sort of felt like a slap in the face.  "do you need help?  you're not getting any!"  I am so discouraged.    
Tomorrow (as far as I know) the nurse will come, and she will ask if I talked to the kids on Thursday.  I'll have to say no, because the girls were both sick and DSS was in a snit and didn't even show u until the last minute (and then made a point of only hanging out with his friend).  They do *know* what's going on.  There has been little to no discussion about "what happens when".  One batch of family is too far away (although my DIL is the most willing to try to help .. but she has had a lot of serious health issues herself).  The other batch .. well, TGF doesn't have time (and frankly, although she does help me some, she isn't willing to make any concessions at all to make any more time for us); and DSS is simply in denial.
It will be interesting to see how he handles being the only one here with DH for a long stretch Saturday.  That is, if the parade doesn't get cancelled, since the forecast is for cold and rainy. :(