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Thread: mum and MS, how to help her deal better?

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    Default mum and MS, how to help her deal better?

    hi everyone! hope you are well! I am doing amazingly! among other things, I have been nominated for a youth award in NZ's supreme disability awards called the "Attitude Awards", and last Monday was filmed for their TV show, and on top of that, I am going to Taiwan for a conference in November and I (hopefully) have a law internship lined up for next year! really exciting stuff.

    this topic isn't really about me though. more about my mum who isn't doing so well. I have never really talked about her being diagnosed with MS and I never really talk about it outside of the internet either, in fact few people know about it.

    anyway, yeah, she has Multiple Sclerosis and although I think she has the slow onset type, it has progressed quite a bit lately, to the point where she struggles to walk and is falling over quite often. also the cognitive effects are really noticeable, especially when it comes to her memory and mood changes. she gets agitated really easily and her memory is really poor, even if you tell her something multiple times, she forgets. she also gets quite confused about things and often goes off on unrelated tangents in conversations. she also gets lost easily even if she has been to the place a lot.

    I don't know if I've talked about this here but my parents immigrated to Australia 6 months ago. I wanted to stay here to finish my studies, so I moved into a flat on campus and have been living independently ever since. It's been a big adjustment for me but I really enjoy the independence. I've just come back from visiting my family for the weekend and it really worries me that each time I go to visit them (about once every two months) my mum's condition seems to have deteriorated a bit. my dad is also very stressed and on anti-depressants and it's just quite difficult for everyone to deal with, especially being in a new country. lots of arguing etc. It makes me glad that I decided to stay here, because my mum can't even lift my wheelchair into the car without struggling a lot. If I lived with them, I would not have much independence at all and being around them is quite stressful emotionally.

    anyway, she is part of the MS society in their area which I think is very helpful to her but I guess my question is, how can I help her to deal with her loss of function better? this is a very strange position for my mum and I to be in because she has always been the one helping me deal with challenges associated with my CP, but now I feel like it is the other way around and that I am the one having to help her come to terms with things. honestly, I think she'll need a wheelchair soon, and she is clearly "disabled" but she seems very against the idea and doesn't want to label herself as such. I can understand.... it must be very hard for her considering she has had to raise a disabled child and is now facing the reality herself, but at the same time, I get quite frustrated and a bit offended because she treats being 'disabled' as this big, bad thing when I very much consider it a part of my identity... a positive part even. I know she doesn't mean to offend me like that but that's how it makes me feel.

    anyway, any ideas on how to help her (and the rest of my family) deal with these changes in her life, even though I am living away from her most of the time? it does make me really sad that my mum is going through all of this, after all she has had to deal with with me. :( life ain't all that fair and this post isnt' very clear but I hope it makes some sense!
    Last edited by CPchick; 10-03-2012 at 04:22 AM.

  2. #2
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    You should post this in the MS section of braintalk also. My suggestion would be just to comfort her and let her know you love her. When an able bodied person becomes disabled its like a huge adjustment for them. Their whole identity is changed big time. For us as people with CP it is just part of us. Imagine if you suddenly woke up one day and your CP was completely gone. Would be scary because on some level you'd be a different person right? I would also tell her if she is afraid of disability that you have lived with it your whole life and she can look to you as an example of a happy, lively, disabled person and that there is nothing to be a afraid of. That's what I told my family member who developed a visual impairment from cataracts when was freaking out about her disability. When she freaked out I kinda felt offended too.
    Last edited by funnylegs4; 10-03-2012 at 08:27 PM.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Congrats on the award and internship!! Glad to hear school is going so well! Sorry to hear about your mom, I wish I had some advice to give. Perhaps she fears the progressive nature of her condition? For me, I think I would have an easier time accepting a major medical condition if it were a static thing that I could adapt to and carry on. (((hugs)))

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((CP Chick))))))

    Congratulations on your award, your law internship, and your trip to Taiwan! Do you have any links to the awards site, or the tv channel, where we might learn more and/or see you? What kind of conference are you attending?

    I'm so sorry that your mum is contending with MS.

    Trying to look at it from her perspective, I could understand her denial of any kind of disabling condition. She has been the careprovider and now, she is requiring care from someone else. She knows what caregiving entails, and perhaps she doesn't want to impose on anyone to provide that care for her. While you are gaining your independence, she is losing hers. I'm sure that it is frightening for her to lose skills and memory and to become dependent for her needs.

    As a mom, I can also imagine that it upsets her that she can't lift your wheelchair or help you, as her condition is exacerbated. She's your mother, so she innately feels the need to care for you. She may view that as another loss.

    Perhaps it isn't that she's ashamed to be disabled, but that she doesn't want to become a burden.

    My only thoughts of how you can help her are these:

    Be a really wonderful daughter to her. Call her on the phone, text her, send her cards and notes, flowers for no reason, etc. Let her know that she is and always will be your mum. She isn't the disease that is ravaging her body, and that the MS doesn't change your love for her.

    Be a shoulder and listening ear for her. Offer her opportunities to share with you how she is feeling, what she is feeling, her fears, her sorrows, her challenges. Then you can encourage and support her through those things.

    Be a support to your dad. This is undoubtedly very difficult for him as well. He needs to be acknowledged and cared for too. If your mum sees others supporting him, that will help her too.

    Learn about MS. We have a fairly active MS forum here, and I encourage you to post there, along with funnylegs4. The MS forum members can offer you insight and guidance. They might be able to share with you how they want to be treated by their children, which could help you on your path with your mum.

    Be sure to get the support that you need to deal with your mum's condition. Come here or to the MS forum and receive support and understanding.

    Keep living your life to the fullest, achieving your aspirations and overcoming obstacles. Every mother longs for her child to be happy, independent, and healthy. You couldn't give her a better gift.

    We're always here for you.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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