Hello, Introductions, Guilt.

Hi All, Just joined the forum. My Mum has MS, diagnosed about 30 years ago. I’m doing some work on myself at the moment and starting to realise how much growing up with a chronic illness in the family has affected me and my approach on life. I constantly feel guilty for doing too much that Mum can’t do, not doing enough to help, getting it wrong when I try to help. Mum’s health is deteriorating fast and Dad takes on a lot of her care. She has carers 4 times a day but depending who it is that comes Dad doesn’t always feel he can trust them. I just feel lost, I don’t know what to do to try to help and support and feel like I’m distancing myself from my parents because I can’t cope. Hoping to meet people on this forum who can support and maybe I can support others too. Just a bit sick of feeling useless.

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You say you feel useless. What would feeling useful look like in relation to your mother’s illness? Things being OK for her? You see what I’m getting at here: you cannot make things OK. I think the best thing you can do to honour her is to go out into the world and be what you want to be. It isn’t her fault that she has MS and it isn’t your poor dad’s fault, but it isn’t your fault either. MS had wrecked their lives by the sound of things. You aren’t going to help them or anyone by letting it wreck yours more than it already has.

Hello there, welcome aboard.
I mostly just want to second the post above mine.
I speak I suppose from the opposite side of the table here, being a father with MS and being slightly anxious about the future where my little baby son will start to wonder what is wrong with papa and the various talks and likely adjustments needed etc. I hate having to limit my son in any conceivable way due to this rubbish illness, because it is more than anything not at all his fault it is what it is, and I just want him to have the most wonderful life possible.
If he would stick around a little and remain interested in good relations with me I would certainly be very happy, but I would never want him to feel like he has to limit his life and happiness because he has to live up to something regarding me, and indeed so my illness.
He is just a baby so I just look forward to him being able to actually talk to me at all at this point, but then more specifically in your case I would advise just talking openly and living according to your conviction and dreams as much as possible.
Everyone’s different, but I would want my son to tell me if he thinks it’s downright awful to have to walk slowly down the stairs all the time if we walk together or that it’s so damn boring to play chess instead of playing football, and then allow me to say that I also bloody loathe it and then together figure out what we can and would actually like to then manage together.
I’d be happy to hear he would like to help with this or that this or that much and that he can or cannot because of this or that, and then be able to react and reply to that and continue together. It’s so much nicer to be able to talk about openly. I feel bad enough about the things I cannot do and I would hate for him to then also have to feel that way or indeed feel guilty he could/didn’t do more.
I’d want him to be happy with what he could do and did for me, and happy with what he then could do and did for himself instead when it wasn’t possible to do more for me or he didn’t want to.
He should be able to eat his slice of pie himself and enjoy it without feeling bad he didn’t give me half or made me a muffin as well. I’m happy he was born, and I want him in my life, but he wasn’t born for my sake and he ultimately has to live for himself.

And so, well, maybe your parents might feel a little similar to me I imagine. No way to know but try to talk to them I guess. I’m blabbering on as usual so sorry about making you read 50 pages, but yeah try to enjoy your life as you can and want, that’s ultimately a parent’s happiness I think.
Try to talk to them openly. I’m sure your mother would feel miserable to know you’re feeling so bad about her illness, she likely feels plenty sad about lots of her situation already. But when you talk about it you are in this together. And she surely would like nothing more than for you to care about her, even if you may or may not be able to do various things.

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