Be careful how you interpret what the home care nurses are telling you. Hospice is about comfort care for terminal patients. Their goal is keeping your mother calm, comfortable, and unstressed while she waits to die. Don't take their advice as the best way to treat your mother's condition. They aren't there to provide disease management; that comes from her doctors.
Mark is doing pretty well, especially when you consider that in May 2004 he started receiving hospice care and was not expected to live through August. We had his family fly in twice between January and June, because the doctors were pretty sure he wasn't going to make it. Thank heaven for stubbornness - although, there are still days that I could rap him in the head with a frying pan!
(Did I say that out loud?!)
It was rough, but sometimes (looking back) it was really funny. One day, in January 2004, he was in-patient and his ammonia levels were sky-high. (I think it was the day that he went into the coma.) He was disoriented, dizzy, and just a royal pain in the butt. At one point, he decided that he needed to use the bathroom, so I helped him out of bed and started leading him to the bathroom. (It helps if you understand that I'm 6' and weigh about 135lbs, dripping wet. Mark is 6' and weighed 260+ at the time. Got the picture?)
Okay, we're staggering around the room, now. I have no idea who was leading whom, but Mark had to pee. He tried beside
the standing wardrobe and I pulled him toward the bathroom, "No, honey. The bathroom's this way."
He tried IN
the standing wardrobe and I pushed him toward the bathroom, "NO, honey! This way!"
He tried behind the door to the room and I pulled him toward the bathroom, "NO HONEY!! THIS WAY!!"
After, what seemed like HOURS of this, we finally got to the toilet, got him situated, and HE COULDN'T GO.
I can only imagine what it looked like to his roommate - us staggering like drunks all over the room and Mark trying to get his pants down every time we stopped.
He was in horrible pain before the transplant. I used to rub his legs and feet, or put cool cloths on them, every day. The doctors had to drain the fluid from his abdomen several times and he, to this day, has some pain from one of the procedures. Now, with all of the side effects from the HepC treatment, he has a long list of pains and problems that changes every day. But we keep on keepin' on. His two youngest sons live with us now, so it's a three-ring circus! I'm surrounded by testosterone!
Ya' gotta keep a sense of humor - otherwise, you're just sunk.
Cheers! Keep your head up - you've already seen your shoes and the best view is ahead of you!