My Mum has Primary Progressive MS and is restricted to bed / chair although she can use her head, eat, speak, she has a live-in carer. She has been in hospital twice over the last 3 weeks with pneumonia and then sepsis and scary times when thought was going to loose her.
She came home yesterday but is incredibly weak to be able to communicate effectively and to eat/swallow or move her head. She feels she just wants peace and quiet, no stress and is highly anxious if her live-in carer leaves the room.
I am 36 and have a 5 year old daughter. We live 300 miles away from her and looking for advice. I’m wondering if it is reality to consider she is dying? and if so I need to organise compassionate leave from work and want to sit in her room with her. How do I know how serious this is? Will she get back to how she felt before hospital visit (usig her head to push button to operate the wheelchair around the house and to operate TV), or is this how it is now and she is actually bed-bound or Dying?
Looking for people who have been in similar situations. IS there a specialist MS doctor who can call on her?