DAMMIT!!

So, I got a call from the Hospice this morning.  And if I wasn't confused before, I sure as hell am now.  This person said she was calling about Bill's care.  He is currently in an "acute bed" as opposed to a 'hospice bed'.  What does that mean I ask.  Well, in the acute bed he is getting the kind of care that prepares him to go home or into long term care like mom was in.  It seems that just because its in a 'hospice' doesn't mean its palliative care or end of life care.  If he is in a hospice bed, apparently, he gets end of life 'comfort' care.  And then she finally says that that particular bed is 31.90 per day.  So, after a long very confusing conversation what it seems to boil down to is that he needs to start paying for his care now that he is no longer going to be a viable human.

  At this point, and I have to admit that after all the different conflicting info I have been given from day one, I am just a tetch bit ticked off.  So I finally just told her that frankly I don't give a crap 'where' he is, or 'how much' it costs, just put him there, let me know where he's gone and I will pay whatever it costs and I will go see him.  I am done trying to understand it all.  And no one seems to want to admit that this man is not only dying but getting close to it. I couldn't believe that yet again I was explaining that given that he is pretty much paralyzed and unable to talk…he CAN'T COME HOME!!  He is so sick he doesn't know whether he is up or down.  There are people in the hospital way less sick than him but because he can't be helped to be made better, there seems to be no room at the free inn anymore.  Which is totally fine with me…I will be happy to pay whatever they want…just please choose a spot and put him there.

April went in to see him this morning and he was distressed, incoherent and not making sense.  Finally a whole team, including a male, had to go in, told April to leave or wait outside while they did whatever they had to do with him.  He is still very big and heavy and hard to handle.  And he gets very frustrated and pissed off, the poor guy.

This afternoon Monte went in and neither he nor the nurse could wake him up.  Thats new.  He has always been able to wake up but today he couldn't.

Tonight we will go back.  He tends to be better after dinner.  I will bring my laptop and see if he is able enjoy some more pics.  I hope so.

Well he was no better tonight.  But Ester, the amazing nurse he has, took a few minutes to totally explain the process of hospice care.  And what it boils down to is exactly as I said above, when he is deemed no longer viable he is either moved to long term care somewhere, where we pay, or to end of life palliative care, which we pay for.  With the latter option, he doesn't actually change beds or rooms, we just pay.  Which is totally cool with me.  And he is about to be deemed "end of life palliative care" as of tomorrow.

Jocelyn and Emily and baby came to the hospice tonight for a visit.  Bill was totally out of it so we went to the lounge and visited and watched Ainsley, in her little car seat, battle going to sleep, but ultimately succumbing.  Its kind of like watching a campfire.  We all sit around and….well, just watch.  She has such an expressive little face.

Neither Monte nor I felt like going home so we detoured and went to a movie.  The Maze Runner. I couldn't put the book down and the movie did not disappoint.  So good.

And now off to bed.  In tomorrow's post I will tell you about a really annoying and an unbelievable inconvenient boondoggle that has happened.  I can't frigging believe it to be honest.  Life glitches suck!!  (shovel list)  TTYL