Hi there
my mother has had Ms since her 30’s she too, a major dip in her mid 40s which meant she had to give up work. Fro. Then on it was a slow downward slide to where we are now. 4 years ago my dad walked out on her after revealing he was having an affair and admitting that if he knew she’d have MS then he never would have married her (nice one) I was 9 months pregnant at the time and it all fell on myself and my older brother to get her moved out to someone where safe. She moved to a warden co trolled flat but it was small and not set up for a wheelchair and hoists. Last year we got her moved to a lovely newly built extra care housing where she has her own flat and carers onsite 24hrs, this is perfect for her as she it still only in her early 60’s.
My nan passed away just before Christmas last year. Although my mum and nan weren’t close it seems to have triggered another dip with my mum and her mental and cognitive state has declined. Her gp was concerned by her memory and generally cognitive ability so referred her to the mental heath team to assess for Dementia. We saw the consultant last week who confirms he believe she is suffering with dementia, whether this has been brought on my the MS he doesn’t know.
Her behaviour has changed and a lot and the home is reporting that she is using abusive language towards the care staff and the carers are becoming very upset by it. Language my mother wouldn’t use eg “she’s getting on my tits, she stinks” the care manager is starting to lose patience with her, she is hard work for them I feel and they seem to be wanting any excuse to say she is no longer suitable. But a nursing home would be devastating for my mum at this stage, not only that, but the cost of a nursing home would be extortionate as my mother is still young and could have many many many more years yet!
I am medical myself, so I am aware of CHC funding and I also know it is very hard to get. Has anyone been successful with their application for it? I have quickly gone through the checklist and she gets 2 A’s but I’m aware this still doesn’t mean they will approve it.
Does anyone have experience of Ms and dementia? Is there any specific support out there? Should I be informing her MS nurse of the new diagnosis? From experience with her she doesn’t seem to offer much, I feel that because mums condition is seen to be on a downward spiral, and she isn’t receiving any active treatment for it then they just say well it’s the nature of the condition.