Help and Support

Caring for someone with MS
1

Hi

My daughter who is 27 was diagnosed with MS 18 months ago, she had just had her second daughter when she lost her sight in one eye, never did we expect it could be anything like this

When they diagnosed her with MS we were in the middle of Covid and the diagnosis was over the phone, the next day she ended up having a stroke

Its been a long 18 months and she has been on Tysabri every month now since January and although her balance and left sided weakness is still very much an issue she is accepting things better although there is no great improvements

She was with her Partner who became her carer after her diagnosis, and up until last month and after her finding out he was cheating on her they have now split up

I have now taken the role of carer, although I don’t claim it as I also work Full Time, I go every morning to take my 8 year old grandaughter to school, I go most lunchtimes to check on them, I go every evening to help get them to bed and if my daughter needs a bath etc

With the pandemic there has been no support groups etc, Im just wondering if you can send me any info on groups as she doesnt leave the house apart from the afternoon school run

We are still awaiting the council to appoint an OT for adaptations, but the hospital has given her aids ie Hand grips, perching stool, bath stool etc

I have got in touch with a cleaning company for them to come once a month and deep clean, which will be a help and I am trying to find out any further support I can get her…

I have to say I am completely drained (I feel so bad saying it) but I can’t let her down and I haven’t said anything to her cause it would really upset her, so any bits of help that I can put in place would be much appreciated
Thank You :slight_smile:

1 Like
2

What a lovely supportive mum you are. She is so lucky to have your help… :heart:

3

Dear Sammi, oh dear, my heart goes out to you.
Your daughter has been through so much…it is so unfair…but all we can do is the best we can.

You are a wonderfully supportive mum and I can imagine how stressed and tired you are.

the first thing I urge you to do is engage other carers, either people you know and trust or maybe an agency for a fill in. You cannot keep going at the rate you are…I’m sure your daughter wouldnt want you to burn out.

I have had agencies and although they help, you are better with carers on Direct Payments.

You need to ask for a Care Assessment from Social Services. It might take a while with waiting lists. Carers do all sorts for me…personal care, outings, hols.

Would you like to ask me anything…anything at all? I’ll help if I can love.

I’ve had PPMS 24 years, have no mobility and depend on carers and hubby for almost everything.
much love Boudsxxxx