This is my first post to the forum. It’s my mum who has MS and I am one of the family members that provide care.
She was diagnosed in 1972 at the age of 29 and pregnant with her 3rd child (4 kids in total).
Mum is 79 this year and life is hard for all of us. She’s battled against her MS for 50 years and that has often felt like a battle with us and the world.
A few years ago I arranged carers to help her with getting dressed and personal care but she still refuses to allow them to help her and instead would rely on my father to get her dressed and toileted before they arrived. He is suffering from acute osteo arthritis in hips and knees and is also showing increasing signs of dementia.
My brother has moved back to the family home to look after them and the rest of the siblings take it in turn to come back and support.
Recently OT helped hugely with getting their bedroom and toilet floor changed to non slip, easy clean surface, installed a biobidet and a shower and have provided a turn safe transfer aid. The latter helps a bit but is a bit precarious on the new floor.
Getting mum out of bed in the morning and on to the commode is proving extremely difficult and i was wondering what the next step in the journey is. I have bought many many disability aids over the years only to be met with point blank refusal from mum to give things a go.
She’s always been difficult. I’ve never known her to be any other way but is this her personality, her age or the MS that’s making her so belligerent. Maybe it’s all 3.
Sorry to whine. As I said it’s my 1st ever post so I guess I’m reaching out to a community who knows and understands this journey.
Mum and dad live in a very remote part of the country with 1 MS nurse 90 miles away via a ferry so there’s not a lot of knowledgeable help around to advise the family on how best to cope with and what to expect.
Thanks for listening