Hi all. I’m new to the forums so please bare with me. I have a fair bit of exposure in a caring capacity to MS as I have both family and friends with different kinds, so I know it can vary.
My query today is about starting to get a care package in place for a family member. This may seem quite blunt and lacking in empathy but we’re really desperate for help now.
She has secondary progressive MS and has had the diagnosis for 10 years+. The symptoms vary. She suffers mostly with her legs, she has some mobility to get around the house (she lives in a 4 story house with only 1 stair life but that’s another issue) but cannot do anything outside without mobility aids. She’d also on a waitlist for a hip replacement. She’s been unable to get on a treatment and is only being prescribed pain relief. We aren’t sure as to what capacity it’s effecting her mentally but we have noticed a decline in a lot of different mental functions and it’s hard to know how this is impacting how to care for her - she’s forgetful and extremely anxious, very dismissive of everything happening which makes it very difficult with care professionals (is this a secondary progressive thing?).
She has recently been admitted to hospital with a chest infection and possibly sepsis. At home, she doesn’t care for herself, doesn’t eat, doesn’t drink fluids etc. The house is very unsuitable, she has 1 stair lift but 2 other flights of stairs to navigate (1 of which doesn’t even have a hand rail) and accessing the toilet requires using these stairs. She won’t move house, says she can’t afford adaptations (although isn’t eligible for council funding) and is refusing any sort of care aid. At what point do you have to force it? I feel like we’re beyond the empathy stage but everyone’s also concerned about her mental health if things are forced upon her. I have even insisted something as simple as a wedge to sleep on when her chest is bad so she’s not lying flat, but that was a no because apparently it hurts her hip. But she also won’t use her multiple inhalers.
I just don’t know what to do to help her.
Apologies, this ended up being a bit of a rambling rant. Appreciate if you’ve made this far. Any help or advice is welcomed.
I think that if I was you I would try to have a chat with her GP, her MS nurse and while she is in hospital, try to talk with the ward nurses as well. Explain the situation to them and see what they say and advise
I found this archive while searching for ways to handle a stubborn relative refusing home help.
We had this exact crisis with my aunt. Trying to force a move just made her defensive and angry. Instead of fighting her on the big stuff, we focused entirely on making the multi-story layout safer to lower her baseline anxiety. She already had one lift but desperately needed coverage on the other flights where she was slipping. We brought in Halton Stairlifts to fit a reconditioned unit on her worst staircase to remove the immediate danger. Once the exhausting physical struggle of navigating the floors was gone, her mood completely shifted and she became far more receptive to accepting the rest of her care package.
If you’re reading this later down the line, sometimes fixing the immediate house hazards first is the trick to getting them to accept personal care.