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How can I learn about and support a parent with severe MS when I dont live with them?

Hi.

My mum has secondary progressive MS.

Ive never been allowed to talk about it because she wanted me to have a 'normal' childhood, but I have all these bursting unanswered questions and worries.

Im now in my 20s and the questions and worries aren't getting better, they're getting worse, because Im now hundreds of miles away at the same time as she's becoming increasingly ill.

I don't know how to find out about it and learn how to deal with it.
I don't know how to support her now when she tells me the MS has destroyed another bodily function, and I don't know how to support her in the future as this continues to get worse.

I've never talked about it to anyone. I tried writing this post before but its a real can of worms, i don't know how to do it.

Any tips on where to start finding out about things or who i can talk to?
Or any tips/personal experience on helping support a family member with MS when you don't live with or near them? - possibly as an adult child with a parent with SPMS?

I've Googled, but its not the same as hearing proper information from an actual human being, whom you know understands.

Topics Families and carers

Well done for caring so much about your mum. You know ,psychological supportis just as good as physical especially when you are far away. Just have a nice chat with her daily as much as you can and see if you can help her apply for some help at home. Tell your mum you are an adult now so she can tell you if there is anything you can help with. It is very lonely being ill and you just want a distraction so even if you tell her about your day and what you do it would be good. You are taking the right steps .Well done. Your mum will be proud of you xxx

I have MS

Hi,

A significant  effect of most disabilities is the isolation it creates.

I can't improve on Cosine's suggestion that communication is the key and that your time is the most valuable thing you can offer your mum.

How would you both feel about phoning each other every one, two or three days? As long as it's a regular arrangement it will definitely give your mother something to look forward to and you will be the first to understand what she wants or needs. That will help you to find out about how MS affects her and you can learn how to help her deal with it.

If your mother still feels that she needs to protect you then you will have to spend time breaking down that maternal instinct so be patient.

Best wishes,

Anthony

I have to say your mom had/has a very strange attitude to dealing with  her MS.  She knows it, you know it and it becomes "the elephant in the room".

I'd be straight with mom and tell her, you can't help if she does not communicate how she feels, what she needs help with and so forth.

I'd say regular chats on phone or skype would be a help.  Being disabled can be lonely.  Find out if she has any needs that aren't being met and if possible ask if she wants financial aid.   Disability is EXPENSIVE!!    Adaptions to a house, a new wheelchair, scooter - all these thing cost ££££'s and to be able to buy them without worrying is hugely relieving.