Day 42

In case I've gotten my days really mixed up (never claimed to be able to count! LOL), today is July 3, 2013.  
There may or may not be interesting developments as of yesterday.  As (I think) I previously posted, the idea was to talk to the PCP about a hospice referral.  So, we go out for appointments in an all day long pouring rain.  We were late to the dialysis clinic (he just couldn't get moving.  Plus, he couldn't keep the time right in his mind.  And for some reason he thought "the other appointment" was on Friday.  I have no idea where that came from).  They were busy, so we were cutting it close leaving.  I didn't get to talk to the nurse, because I had to park in the open lot (let DH, DGS and BGS off under shelter at door).  
We made a quick stop through town (next town over actually - appointments were in 2 different towns, but only 10 or so miles apart) to get food - had to feed 2 teenage boys!!
When we got to the doctor's office, the parking lot was strangely empty; but the waiting room filled up fast as we waited.  After a few minutes I was called up to the window and told the the PCP was on vacation; that they had tried to get in touch with us, and it has been rescheduled.  (side note:  the new appointment IS on my calendar ... but no note anywhere about cancelling this one!  So, my bad.)  I told the nurse that it was only a follow up, nothing special going on; but that I had wanted to talk to the PCP about hospice.  A few minutes later a nurse called me back, and we had a discussion ... I believe she really understood the situation and my frustration.  She said she'd see what she could do.  The problem, of course, is that his regular PCP is the one he sees and knows him; the other doctors don't.
I couldn't remember the name of the hospice agency.  When we got home (still in rain!) I located the card the nurse left, and left a message at the doctor's office.
She called me back and said that another doctor (one who DH had seen at one time; I just didn't recognize her married name) did do a referral; but they sent it to a different hospice agency since they weren't familiar with the one I gave them.  They based the referral on COPD (well, chronic rejection IS a "chronic obstructive pulmonary" condition if not a disease) and on Dementia.
Meantime, I had emailed the coordinator at Duke.  He did answer me promptly, but only told me that any contact had to go through him.  Well, he did answer me right away - but he doesn't always, so I find that a bit troubling.  But, I emailed the PC nurse (because the phone number on her card is so tiny I simply couldn't make it out.  I'm desperately hoping I at least got the email right!) his contact information.  I also told her about the visit to the doctor's office and the name of a contact there.  That was before I got the call; and the nurse is going on vacation.  
If the PC nurse contacts Duke ... we could end up with hospice referrals to two different agencies from two different doctors!  And, he still has to be evaluated ... for all this, we could very well end up exactly as things are right now!
And meantime, we're still plahying the wating game.