New surroundings

We were transferred from the hospital to the inpatient hospice facility today.  The transfer was supposed to happen in the morning.  It got rescheduled to 2:00.  The ambulance company was backed up and never showed until 3:45.  We finally got to the facility and Roger squared away in the room.  My blood pressure was up because they didn't hit the time scheduled.  In a horribly unpredictable world, I thought the transfer could at least go as suggested.  I think we both were on edge because we knew they were going to disconnect Roger from the IV pump of pain medicine to transport him to this facility.  They dosed him up with extra pain meds and got him here.  We were terrified he would have tremendous pain during the trip. 

The room is spacious and beautiful with a lovely view out in room french doors. So, you could breathe a sigh of relief for the room.  I was not happy with the staff who received us.  They seemed disorganized and simply didn't seem to have a sense of urgency.  It completely freaked me out.  Naturally, I'm a smidge on edge...but PEOPLE HELLO????  New patient with extreme pain....CHOPPY CHOPPY GET YOUR FREAKIN BUTTS IN GEAR....Ironically when we were getting ready to leave the hospital our day nurse, Marian (who was amazing!) said, "I thought about becoming a hospice nurse but ultimately decided against because I move too quickly and couldn't slow to their pace".  I thought the comment odd and that maybe I misheard her.  Now, that we are here....hmmmmmmmm.   I'm trying desperately to not go postal.  We'll see how tomorrow goes.

The pain meds were up'd again today.  Roger had a much easier day albeit a day spent sleeping or staring at the TV with a glazed over stare.  So, the good news is the pain was abated a little. The bad news is the medicine whacked him out.  Thus the continued tweaking.  We received a call from a doctor in the family.  He suggested another approach that would aggressively help with the pain but would allow Roger to be more conscious and present and living life.  Basically it operates under the same principal as an epidural women receive when having a baby. I guess, blocking the pain in this back and lower extremities.  Ironically I asked the ER doctor if they had something like that which they could do.  She said it could be explored with the inpatient doctor and the pain doctor.   Bet you can guess what conversation I will be having tomorrow with the doctor here at this facility and with Roger's oncologist. 

We have continued to learn throughout this process, YOU have to be your best healthcare advocate or have someone close to you be your advocate.  YOU have to challenge the approach.  If things aren't going the way expected then ask for change.  The hardest part of it all is trying to know all the information you need to know....or maybe just trusting your gut instincts. 

Roger is snoring away in the bed across the room from me.  I'm not in a good space today so I'm going to stop now and crawl into the recliner next to his bed and hunker down for what I hope will be a full, uninterrupted nights sleep for Roger and me.  G'nite.  Lv, a & r