I have MS. I have started this thread because I want to share it with my mum.
Please may you post your advice for family members of MS sufferers?
She appears unable to let me learn my own lessons - for example if we’re out she won’t wait for me to ask for help. She’ll take my wheelchair handles, she’ll speak for me. It erodes me as a person. I’ve tried talking to her about it, but she seems unable to hear me, and continues to treat me like a child (I’m 37!). So maybe some advice from other people who have watched a family member suffer with MS would help her? I’ve said that when I want help I’ll ask for it. I’m still learning how to navigate being a wheelchair user and I can only learn if mistakes happen and if I’m allowed to make them!
Any advice you have on how she can learn to accept my illness and work with me instead of babying me would be greatly appreciated. Thank you
Was she like it before you got MS? Growing up etc?
I’m 59, diagnosed only last year, yet my 90yo Dad panics if he calls and doesn’t connect. Just yesterday, I had 3 calls in 28 mins from him.
They never stop being our parents. And the same in turn to the generation below us.
I feel your pain, I am the youngest of the family, and after a crap few years, had to move back in with parents for a few months recently whilst sorted new place out.
I was treated like a 13 year old (43 here), I had to be home by certain times, if had a drink was demonised,wasn’t allowed to cook for self…it was horrible. So, as mentioned above, I think it’s a parental thing regardless of the situation you are in with some parents.
All that being said, when it comes to my illnesses…
I can’t give you any advice with how to get her to treat you better/like an adult as my parents full on buried head in the sand since my issues. To this day, years later, they have no idea how to handle it. Keep on saying “you need to get out and…” or “why don’t you do …”. It’s odd, just think some people struggle to deal with changes from “normality”, but I do hope you can find some advice that can pull her into a more understanding place.
It is difficult for both of you under these circumstances. Sometimes even when I need help, I don’t actually want it ! There are times when struggling through by myself is more valuable and any kind of victory is sweet. (Despite delays and other physical costs) The problem can be that neither myself or any “helper” can be certain of the right time to help or the right time to back off.
Another deeper issue for you is the ‘parent / child’ relationship history & dynamic. I can only suggest that you try to discuss this in a neutral environment , with kindness and try to avoid triggering or reacting to standard responses. If there is any way you both could try and imagine yourselves in the others position this might help. Sending you both my best wishes. Mick
I started saying “Mum, if I need help, I’ll ask for it”, and then I just kept repeating it as needed. Don’t get angry. Keep your voice steady. She doesn’t particularly like it, but she’s backed off considerably. It did take months, though, and she will always have the knee-jerk reaction to reach for me when she thinks I need help.
It’s a parent’s instinct to help their kids, so that’s just one more burden that MS has saddled us with. You also need to be able to swallow your pride for those times when not accepting help is only complicating things.
I have developed the “thanks but no” response with a smile. And when it is Joe public offering, I add “thanks for offering” because on another occasion I might be totally thrilled to have some help, so I don’t want them to stop offering.
NorasMom makes a great point about not complicating things by swallowing pride on occasion… very wise