Hello, I am new on here, just joined today, I came upon carers UK doing an internet search. I am 34 and care for my mother who has multiple sclerosis and now also care for my nan who has Alzheimer’s disease because she has been with us during the lock down. Mum was diagnosed with MS in 1990 so I have kind of just grown into caring and actually work as a teaching assistant in a special needs college (with profound and multiple learning disabilities) so a lot of caring is involved with that too. Most days caring is alright as I share it with my dad- it used to just be me as he lived abroad. But sometimes I have to deal with feelings of guilt, sadness, worry especially if mum has a relapse. Is anyone else on here a carer for someone with MS?
Hi Vicky and welcome,
I don’t have experience of someone with MS, but I do have experience of working in a special school with children with autism during the day and coming home and caring for someone with autism the rest of the time - rather a ‘bus man’s holiday.’ I also think it makes you very hard on yourself as you want to be as professional at home caring as you are when you are at work - but keeping that up 24/7 isn’t humanly possible.
Welcome to the forum, your workload is too much, no me" time at all. As sadly both carees are going to gradually deteriorate, you need to think about becoming their Care manager, rather the hands on carer. It won’t be instant but gradual.
Inevitably, a few questions I’m afraid. Do you all live together?
Mum and gran both claiming disability benefits?
Have they both had Needs Assessments from Social Services?
When did you last have a Carers Assessment?
Do you have Power of Attorney for both of them sorted out?
Yes, my Wobbly has MS, at a fairly advanced stage now unfortunately. Legs don’t work at all, left arm and hand are fairly useless, brain doesn’t work like it used to, (and sometimes I’d say it’s not working at all).