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.
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.
"What you’re describing can happen fairly often in very frail, bed-bound elderly patients near the end of life, especially after repeated infections, hospitalization, encephalopathy, and long immobility. The repeated knee lifting, whimpering, arm tightening, sweating, and restlessness may be her body’s way of expressing discomfort, neurologic agitation, anxiety, muscle tension, delirium, or pain she cannot clearly identify or communicate.
Even when a person says “I’m not in pain,” they still may be uncomfortable. Advanced illness and encephalopathy can make it hard to interpret or verbalize sensations.
A few possibilities hospice often considers include:
generalized discomfort from prolonged bed rest
muscle rigidity/spasticity
terminal restlessness or agitation
delirium/encephalopathy
restless legs–type sensations
urinary retention or constipation
positioning discomfort
untreated pain showing up as movement instead of words
medication side effects or withdrawal
fever/autonomic changes from infection or neurologic decline
The sweating plus repetitive movements suggests her body may be “revved up” neurologically or physically somehow, even if she denies pain.
A few practical things you can try or discuss with hospice:
gentle repositioning before bed
supporting knees/hips with pillows
light massage of thighs/calves/feet
checking whether bladder retention or constipation could be contributing
keeping the room cool/light bedding if sweating is significant
very calm reassuring touch/voice at night
noting whether the movement happens at certain times after medications
But honestly, the most important thing is to push hospice to reassess her comfort plan, because persistent nighttime repetitive movement and whimpering usually means something still is not adequately controlled.
Tylenol alone may not be enough if this is neurologic agitation, muscle discomfort, or nonverbal pain.
Hospice commonly evaluates whether medications for:
pain,
anxiety/agitation,
muscle tension,
or terminal restlessness
might help improve comfort and sleep.
You do not need to “prove” she is in pain in order for hospice to address visible distress behaviors. In hospice, observable suffering matters.
I would specifically tell the hospice nurse something like:
“She repeatedly lifts and drops her knees throughout the night, whimpers, clenches her arms, sweats, and appears physically distressed even though she denies pain. We feel she is uncomfortable and would like a more thorough comfort reassessment.”
If the current nurse minimizes it, ask for:
the hospice case manager,
hospice physician,
or a comfort-focused medication review.
Also seek urgent guidance if you notice:
fever,
new rigidity,
difficulty breathing,
inability to urinate,
severe abdominal distention,
new seizure-like activity,
or sudden major mental-status changes."
I'm sorry you have to go through this. May your Mom receive relief and you receive peace in your heart on this journey.
So if they're not doing their job it may be time to find a different hospice agency.