New to this, Help needed

Caring for someone with MS
1

Hi all

I am new to the Forum and infact the site. I am wanting some help/advice… and not really sure where to start.

My aunty who is 50 has MS, i’m not even sure what type, I am presuming from reading on here that her’s is pretty bad and progressed as she has had it for nearly 20 years. She has coped with the deterioration of her ability to walk for years and is only now that everything is really starting to show. Her walking is now VERY poor, she has had many falls, one that resulted in her visiting a&e for stitches in her head. Her eye sight has deteriorated, as has the use of her right arm/hand resulting in poor handwriting and difficulty cutting food.

My aunty is married and has two older daughters that have both now left the childhood home and either work or are at uni far away. My uncle has a busy job and is often out of the house from 7am-7pm. She also lives a good 2 hours away from me and the rest of her family plus she also has only a handful of friends where she currently lives. She has kept her MS under wraps for many years and it’s only recently that she has told her daughters and friends exactly the cause of her bad walking claiming before she had a bad back!

Over the last few months I have seen a noticable decline in her health both physically and mentally. She has little support from her nurse or is reluctant to access it!? Her home is difficult to get around and she now stuggles to get upstairs and to the toilet, she also finds driving difficult and has pretty much stopped, resulting in her being in her home 24, 7, she is very depressed but as I said, reluctant to access any help, she really needs a wheelchair, alterations to her house and a carer etc I also feel my Uncle isn’t coping and is opting to stay out of the home to not face up to it which I can understand, it is devastating on all the family!

I am very fond of my aunty and am finding it all very upsetting and would love some advice on what I can do to help her come to terms with the situation and live a better life. I feel she feels on her own and is giving up in a way.

Any advice would be greatly appreciated!

A VERY worried neice x

2

Has she seen a specialist recently or has she just carried on without seeing anyone about it for years. There have been new drugs that can help her if she goes to her own GP and gets a referal to an MS specialist. Don’t really know how to get addaptions etc, my son is not in need of them (yet).

Does she get Disability Liveing Allowance, there is a carers part that is supposed to pay towards a carer. Also if she is only 50ish she may get ESA if she has worked. People on the other generel part of the forum would know better and they were incredibly helpfull when I first learned my son had MS. You would probably be better posting on there, it is busier than here.

Also sounds like her family could do with a good shake up, why not ring her daughters and tell them you are worried about their mum.

At least she now has you on her case, you can achieve a lot on the phone with a bit more info, good luck to you.

Jash

3

Hi Fle

By the sounds of things your aunt needs a fair bit of external input. However she herself and your uncle have to be persuaded to initiate proceedings. Most of the adaptations etc that are needed will be accessed either via adult social services and the occupational therapist or, if you have one, the local rehab team at the hospital. The GP can refer your aunt to rehab services if she or your uncle were to explain her current needs and ask for the referal.

Social services are the ones who will check what benefits she is getting and will help with any application forms to ensure that she is getting what she is entitled to. They will also help to organise carers if needed to supplement what your uncle and yourself are doing and will also bring in an OT (occupational therapist) to look at how to help her get the best out of life in her current environment given her current mobilty state and abilities. However all this has to come from them - OK you could try to phone social services and suggest that somehow your aunt has slipped between the cracks and could they take a look but it is better coming her or your uncle.

Hope this is some help.