HERE are more details. Many new to this site may not be interested in reading further.
REDDIT has a link with testimonials of family who witnessed their loved one dying of this horrible disease, and we will probably post one soon, too.
I wish I could say that Hospice was helpful. I am very sorry that I did not shop around bc Carle Hospice made my experience a nightmare.
My 3 DD's spent almost every evening with him, and my DD who lives 2 hrs away drove here to spend time with him, too. SHE was doubting that she made a difference. I have consoled her bc she allowed me to take care of my animals and other responsibilities, like cleaning cat litter boxes.
She spent her time sitting in bed with him watching stuff on tv and talking.
He gave her some tasks post mortum and told her things that I hadn't/wouldn't have heard from him.
All 3 of them fed us/him, while he was still eating. He stopped eating 5 weeks before his death.
Jim became afraid of the dark early on, and we kept most of the bedroom lights on at night. Since my youngest DD slept in the hospital bed that we never put him in, and we switched out at 4:30AM, so that the puppy could eat/drink/play and run for 90 minutes before she had to go home and then to her job, even with a sleeping mask she couldn't sleep with That much light. After our intervention, only the torch light in the corner stayed on 24/7 until last Sunday.
He only had about 10 days with problems swallowing--may people with this ailment cannot swallow for much longer periods of time.
He never had any writhing pain, and the stupid Hospice nurses were questioning whether he needed the morphine and valium (suppositories,} which were the only drugs that gave him relief.
They failed HIM in last week by not ordering enough of both.
They also had ordered only 2 padded bandages. I was expected 2 boxes, quantity of 5 each. I was out of Valium and the specialty bandages.
My daughters kept remarking my stoicism, but THAT finally broke me. I had local sources for substitute bandages.
I had already ordered Terrasil, which was healing up his bedsore, same bedsore that I Thought was a rash the size of a silver dollar and became the size of a dessert plate on his left butt.
They really nice woman who bathed him sent Hospice a screen shot of the wound. NONE of the nurses who came out afterwards even bothered to look at the bedsore.
Their response to wound cream that the bather recommended was to tell me I was using the wrong medication. They never identified the medication, nor ordered it for me.
They said the wouldn't "write up" the bather.
I only enough Valium for 2 days, at 3/day. I needed enough for 5 days--who would have known he wouldn't last longer than that. THEY did, but I was kept in the dark about so many of the things that I had find out online.
There is more to this story but if I delineate all of their failures your eyes will glaze over. Anybody who wants to know can PM me.
Suffice, they made my experience a nightmare, and stole me of my grief while I watched the love of my life diminishing.