my husband. The day before the pre-admission meeting they called and said they coould not take him...at all, ever. He was more "work" than their staff were able to handle. Then we were told the continuing care facility at the hospital would take him, but they have no room right now. To get him on a list for there, we would have to accept care where we could within a 60km radius of our town. We accepted, and they found a place 35km away. They would provide a Doctor from that community while he is there. He was there 3 weeks when I got word he would be able to move here to our facility in 2 weeks. We were quite excited, I brought some of his personal items home with me Sunday, after all we were moving him on Wednesday. Monday morning I received a call saying we couldn't move him. Wow! I was just numb, couldn't believe it happened again.
Meanwhile, in the 5 weeks Bob has been in care, he has lost 11kg, 15lbs! that is way too much, it took a year to get his weight up to 55kg from 43kg. The caregivers won't act on anything I say, they don't tell their superiors, the doctor has no clue about PSP, or the meds. My poor husband has severe stomach pain, and cannot take in food orally or through the peg tube without more pain. I've asked for an x-ray to see if the tube is displaced, or if there is a fecal impaction, which has happened before. They just don't seem to care. I try to do the right thing by placing him in care, and they undo everything I've done. We are almost back to where he was a year ago when the feeding tube was placed, I am so angry, I can't change the disease, but we should be able to keep the poor guy comfortable and at a healthy weight. These healthcare people talk to me like I don't have a clue, who the hell do they think has been doing the caregiving up to this point? We've talked to people within the facility, people above them, and pretty well anyone who may be able to help us out. Hopefully someone will be able to help us, soon, because he cannot afford to loose anymore weight.
Trying to cope with the disease is difficult enough, he doesn't need this too.