@abasket — he was THE sole doc for the skilled nursing but he was just out of of residency and didn’t know how to navigate for the best interests of the patient.
The situation was much more painful and prolonged for all of it, at least partially due to the doctor’s inability to help establish realistic expectations. It caused many extra tears and so much angst st an already tough time.
MIL has been in hospice care for three years. She gets a shower from hospice twice a week. The personal aide who works 30 hours a week takes far better care of her than AL staff (who are nice but won’t help her unless she specifically asks, which she won’t) - and hospice isn’t necessarily there when she actually needs them. The truth is that she’s given up, and she needs more care than ever because she simply cannot and/or will not do anything for herself. My SIL jokingly asked me to “pull the plug,” but there’s no plug to pull. This is one of those very slow, sad endings. You can have a DNR in place, you can decide not to treat illnesses, you can hope that you will be able to have some degree of control over your destiny … but sometimes there’s simply no easy way to exit this life.
I am caring from my hospice at home for my wife who has stage 4 pancreatic cancer. Cannot say it is easy or much fun. She has done amazingly well with her physical recovery coming home on a stretcher and unable to even stand or use the bathroom. It seemed the chemo treatments were too much for her. She got through 4 and then had a serious setback with extremely low BP and body temp and lots of pain. Took almost 4 weeks in ICU to get her stable enough to come home on 11/5. But the hard part is her memory loss and delusions. She had no idea she was in her house or who I was. That was tough. Also barely eats so losing weight. I learned the hard way you cant make people eat. There were frequent words. Her nurse got me to accept that I cant change it.
On the positive side she worked with a PT and me to get more mobility and can now usually get herself out of bed and use the walker to go to the real bathroom with little or no help. No more commode cleanouts. The hospice provided the walker and wheelchair. We have used the chair to get to the car and go places–rides, restaurants, shopping etc. Those days are great but some days she just sleeps all day. Hard to plan much so when it’s a good day we try to go out. Her memory has improved too but is far from 100%. She kinda remembers where she is and who I am. Definitely remembers her kids who live far away. They are coming soon for a long visit and she is very excited. Many days I think her health problems seem secondary and her mental issues are more front and center. She has morphine but has cut back use to as little as once a day. I wish I could take her back to UVa for scans etc to see what is really going on. That’s not part of Hospice. It would be 1000s out of pocket. Yes sometimes I get way too optimistic thinking she could live many months like this. Even travel. It’s very tough.
The gift of someone who loves you caring for you cannot be best. Wishing you both more good days and car rides! 
My heart goes out to you. Your wife is fortunate to have such a loving, caring spouse. This must be incredibly difficult for you. Sending virtual hugs to you.
Sending hugs from me too.
Sorry for all your wife and you are navigating. Ambiguity is wearing against this back drop and I wish you the best.
(When i managed my parents’ hospice care, it was possible to briefly unenroll from hospice for a specific test, scan, etc and quickly re-enroll (a simple transaction at the time) while on Medicare. Offering that in case it may be relevant to your wife’s health/insurance situation and is worth looking into.)
Agree, it could be possible to go on and off hospice. May depend on state or county or insurance. I had a relative interested in that.
@barrons I’m so sorry. May you all have some good days with your kids.
I am so sorry. It is so tough.
DD2’s BF’s grandfather is in a memory unit now, and the grandmother is adjusting somewhat. We had been back and forth messaging; her grandson says she doesn’t share concerns with them. She has gotten lots of information now based on her concerns shared - and is checking things out. Her initial concerns about the use of his pensions and SS funds for his care have been calmed a bit - maybe because she sees that he might not last long, or that he can qualify for Hospice. She has my phone numbers but has not reached out. Emotionally, she says it is difficult to leave him on visits and come home to an empty house. I suggested some things she can do, just some little ‘pick me up’ kind of activities so that she fills some of her daily time with interaction with others outside of the care facility. Normally she is a very upbeat person - she just didn’t envision what has happened with her beloved life partner, and that he could not stay home with her (they tried) - but it might still be a possibility if he is under the right medications and he responds well to them. However, I am thinking the memory care unit is what is working out.
My mom went through pancreatic cancer. It’s really really really hard. Feel free to PM me if you’d like to chat.
Sounds like it’s a situation where it doesn’t matter WHAT you do, at least one of your parents will be irritated by it.
Yes I am thinking about that. Her daughter who is an RN is coming next week and I usually run medical stuff by her.
Sounds like a good idea, I’m glad the kids are coming
Looks like things have gone south much faster than I thought. She slept all day and was not able to have any conversation. That’s on the heels of a long lucid conversation just a few night ago. I guess that final clarity thing is very real. The Hospice nurse came today and assessed her condition. She pretty much told me the end is coming in days not weeks. I had to tell the kids and they are coming over the weekend. Lots of full flights so we had to look at other airports. Thankfully Cville and Roanoke are close. Now just hope the snow is not disruptive. At least her pain is well controlled now and she is not suffering. I had imagined much worse. 
I’m glad the kids are coming soon. (((Hugs)))
My wife passed peacefully in her sleep at home in her own bed. It was quick and pain free. Her kids got to talk to her on the phone earlier today which made her happy. Thank you for all the support.
I’m so sorry for your loss. May your memories of her bring you comfort in the days ahead.
I’m so sorry. Thank you for letting us know as I’m sure I’m talking for many of us, that you’ve been on our minds lately
My deepest condolences, @barrons.