87yo., Came home under hospice care/dx encephalopathy following c-diff x3 over 3 months. (First) following fall/ hip surgery. UTI. Second) 2 weeks post d/c from rehab - hospitalized for 5 weeks. Third:) while at rehab, she had a seizure. Sent to ER. Dx'd with UTI, Pneumonia and c diff. Hospitalized x3 weeks then we brought her home under hospice care. She had c diff 2 more times shortly after coming home. Bed-ridden x1.3 years. Recently started moving knees up and down throughout the night. She whimpers but claims she does not have pain. Did get her out of bed by lifting her up to x2 per week until February as it began to take alot out of her and she is very fragile now. RN suggested tylenol but it continues. Skin is intact. Her forehead/upper body gets sweaty. She does tend to hold her arm's tightly to her body which might explain the sweating.
So if they're not doing their job it may be time to find a different hospice agency.
There's really not a lot you can do. This might sound a little strange, but see if physical therapy will come out for a consult. Not to get her improved, but to teach you how to do Range Of Motion exercizes for her in the bed. This can help prevent contractures (when extremities and fingers permanently fold up) which is a very painful condition for a person. If she can't be transferred out of bed anymore to a chair, don't try to. She can be repositioned in the bed and can be sitting up in the bed too.
As for the sweating. It's good that her skin is in tact. She should be washed up daily in bed and dried very well. Use some Gold Bond medicated powder unless the doctor or hospice nurse recommends something else. I was a homecare CNA for 25 years and I swear by Gold Bond medicated powder. Would she use a small pillow that she could hold on to? That might help her too.
God bless you in the days, weeks and months ahead.