Day 45

Yesterday the nurse came by from the hospice that the PCP's office referred.  She was over an hour late, which kind of messed up my day but oh well.
She did a quick evaluation of Jimmy.  That involved doing B/P (a little high but apparently not "critical" .. told her about it going up and down so much, but like everyone else she wasn't concerned); temp (normal), and sat (93%).  He told her it would have been "more accurate" if he hadn't just been using the BIPAP.  Nothing anyone says will convince him that the BIPAP is "forced" air, but NO supplemental oxygen.  She listened to heart and lungs (wheezing, crackles).  Then she and I went over all his meds and history.  When she left, I had a strong impression that she had decided we don't qualify, we don't need anything.  I guess it didn't help that he told her he was "fine", no pain, and he could get up and walk to the front door, and his appetite was good in the evening (didn't mention that it's only good if I give him something he wants to eat, and if for any reason he doesn't like something, he just won't eat.  And if I put any kind of vegetable other than a potato on his plate, he mostly ignores it completely).  
I got a clear impression, too, that (1) kidney issues don't qualify because of dialysis (and she told me that there ARE patients on hospice who continue dialysis); (2) lung issues don't count because he continues to take the anti-rejection drugs; and (3) heart issues don't count because he is taking medication (even though it's actually for blood pressure).  Gee, there's more about hospice that I didn't understand.  The one nurse told me people "wait too late".  Not true.  Seems to get hospice care you have to completely give up.  They "say" it's for quality care for end-of-life.  Dropping ALL medicines is quality care???
Well, she's referring upline.  I know what that means.  Two down, one to go.

The lady from hospice #2 (the above was #3; #1 was the one that already denied him). emailed me.  She had tried several times to get a reply from Duke and asked me to see if I could get something going.  I emailed the coordinator - several times, actually.  He said everything needs to be sent to him.  Clearly doctors are too high and mighty to be bothered by such mundane things as patient needs.  Anyway, I verified that I had given the lady the right fax #.  Late in the afternoon she emailed me again, still no reply.  This time I called and talked to him (and got a little bit of a run around before I was actually connected to him!  What's up with that???).  He told me that as we talked the requested form had been handed to him.  Not sure I believe that, but whatever.  He said it is a form for Dr. Todd to sign authorizing hospice.  Well, of course, all the doctors had already gone for the weekend.  Figures.  I suspect the form was deliberately held so that would happen.  I geuss I'm just in a negative frame of mind.  He said he would make sure it went to the doctor first thing Monday.  I let the hospice lady know ... so, one more weekend with no real answers anywhere.  My guess is that when that form is received by the hospice people, one more time someone will come out and do an evaluation.  I wish one of them would actually see him try to get up and walk or something.
This morning he tried to sit on the edge of the bed (to use the urinal).  He slid right off.  He can't grasp how to do things safely, plus has no strength.  So ... on the floor he goes.  It was NOON before we figured a way to get him up.  Now he's back in bed sleeping.  My son and family are on the way to visit for the day ... I don't know if DH will even get up.  Well, maybe, but not until late afternoon.  
But we don't need anything.
I foresee, in the relatively near future, that he will pretty much be restricted to a wheelchair.  I've tried to make him walk as much as possible; I fear that once he starts letting me push him around, he'll no longer even try.  Plus, even getting from the wheelchair to bed or chair is getting harder.  I can get a patient lift, but I'm not sure how mobile they are and where it would be helpful.  I'm also thinking really hard about a hospital bed.  The biggest advantage would be the locking rails so no more falls getting out of bed.  That also would force him to call me when he needs to use the toilet.  That I can deal with.  But there is the fact that those reasons wouldn't qualify with Medicare.  I don't want to have to adjust my budget to come up with an extra $200 a month to rent a bed!  If he got on hospice, they could order a bed - no "qualification" needed, and cheaper.  But I'm pretty discouraged about the whole thing right now.  
The nurse told me that with recent Medicare cutbacks, "failure to thrive" is no longer a qualifying condition - meanting people that were receiving hospice were no longer eligible.  Even if Jimmy were accepted, if after 6 months he has the nerve to NOT die, and isn't measurably worse, he could be dropped.  Medicare has made it nearly impossible for our generation to have any kind of quality healthcare.