Hi, im new here, trying to get the best advice to help my mum who really won’t accept help. she was diagnosed a few years ago, and since then she has deteriorated rapidly, now relying on a stick to help her get around and her daily activites are limited on days when shes more tired.
its worse in the evenings when she is most tired or after she has spend a day out/ done something around the house like vacuuming. its exausting and very draining mentally and physically for her which im sure lots of people on here will understand.
to be honest,im really scared for the future as i dont know how quickly she will further deteriorate and how much longer i have with her before she’s immoblilised / cant get out the house much without assistance.the only issue is that she really won’t accept help. i’m not sure if she’s trying to block it out? or almost pretend she doesn’t have ms and it’s “not there”? but i don’t think it will help in the long run. i want to support her the most i can so any tips would be really appreciated.i must admit i find it difficult to help her, especially because she never talks about it and always says “she’s fine” when really i know she isn’t and it’s hard to help with something that is so specific / personal to her, so any advice from other people in a similar situation and what they did to overcome it / help would be so helpful!! thankyou so much.
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I think that we can underestimate how much we’re helping by just being there and loving and caring. Helping doesn’t always mean active intervention.
In fact, uninvited attempts at active intervention can be far from helpful.
There is often much to be said for taking one’s lead from the person with MS. Tactfully letting someone know that you’re there to talk and share if she feels like it is great. As you say, it’s a very personal thing, and we all have our personal ways of coping. Personally, I think denial is underestimated as a psychological coping mechanism - please don’t assume on her behalf that it’s better out than in! That’s for her to decide, and she will be the best judge of what she can cope with psychologically at any particular time. It is a blessing to having loving family around, and I am glad for her that she has you.
In the meantime, you have strong and difficult feelings to process and fears for the future to manage. I hope that you have a trusted confidential friend to share with. You might even consider professional help from a trained counsellor to help you deal with things. MS affects the whole family, I’m afraid, and I am sure that your mother does not want her condition to cloud your life any more than it has to.
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Hi your mum is a amazing woman.she is strong and cut from a different cloth.as we all deal with this in different ways …im much the same when it comes to help .i say im fine . Dont worry. im good. we are tuff cookies.and fight our own battles. To keep our independence and will keep fighting.for it . We appreciate help but dont need it imposed on us . The little things like a cup of tea and a chat . Maby some hovering with out asking.if she needs it doing.the little things … i never ask my wife or kids to help me … as we need to do it for our self.it self worth. Keeps us strong even with our struggles . Give your mum a big kiss and tell her you luv her .and a hug is some times all we need to keep us going . All the best rich . Ps say hi to your mum
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Hi there
Just wanted to let you know that I am in a very similar situation.
By the sounds of things my mum is at a later stage with her ms; she has carers in to help with her needs. Even so, I live with her and am providing some care to her. Frequently she tries to hide things from me until her carers come and it frustrates me no end. I understand why she does it, she doesn’t want us to have a carer-giver - receiver relationship and I try to explain to her that I would much rather help her where I can so she can remain dignified and proud rather than me find things out later when it’s all just a mess. I try to remind her that accepting help will help her feel successful rather than rejecting help and feeling like a failure when she cannot do something. But we’re still not there yet and I came on here today to look for advice - you are not alone.
The way you communicate with people will always vary from person to person so it is just finding the right approach that will get her to listen. I will say that it is so much easier getting through the difficult topics sooner rather than later because as you know this condition progresses whether you like it or not so it’s better to have things around you progressing as well.
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thankyou so much for the reply, it is really helpful seeing it from your perspective as well. some really good advice. thankyou so much. it really really means a lot
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Thankyou so so much for your reply, it means a lot that you can really understand and give me some of your advice. I’m really grateful it means a lot, especially as i’m still trying to figure everything out. Despite the fact that it’s been around 4 years, everything feels so sudden, but equally like she’s had the condition forever. your advice is really helpful. thankyou again
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Hi, thankyou so much for your response. i agree with everything you have said, its so difficult and frustrating because all you want to do is help and understand but its nearly impossible to do that when they keep stuff from you. I think what i find the most difficult is the fact that she does hide stuff, even though i know she wants to be open about it, whenever we talk about it it’s almost like she’s ashamed and i feel so awful for her. i also find it so difficult, and im not sure if you have / have had a similar experience, but everyone around us is pretending everything is fine, when in reality its not.
i feel like im the only person willing to actually say that things aren’t fine, that its only going to get worse etc and that we need to start being more proactive but at the same time i don’t want to scare anyone etc or make her feel guilty for putting this on me . again i completely agree with you about accepting help, i think it’s so important and im not sure if she just wants to stay independent for as long as possible, which i completely understand but the second i try to even mention any idea of extra help she says “ oh no im fine” but really i know she’s not. thankyou so much for reaching out and sharing your experience it means a lot ! i’m here to talk.
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