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Thread: Struggling Granddaughter

  1. #1
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    Struggling Granddaughter

    Hi anyone out there,

    After reading some of these post I feel selfish for writing on this feed. My grandmother was diagnosed with mnd in June after a misdiagnoses of a stroke for half a year. She cannot swollow, talk and is losing mobility in her legs. Seeing her so strong is the only thing keeping me together but I know she must be scared! I don't know how to live without her. I know it's all about 1 day at a time but I can't function anymore. I feel selfish because it's not me and I feel rude for looking for support.

    Any advice on how to get through this would be greatly appreciated.

    Thank you

  2. #2
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    Hello Mizzki,
    This is such a hard awful time for you and all your family. Your grandmother is very special to you I can tell. It's only natural you feel scared and bewildered at what your grandmother is going through. It's very difficult to know how and when her condition will alter but I know how it affects all the family. Just be there for each other as the days are often hard on the family, if it helps to talk about it then this forum is a good place for you.
    Enjoy all your visits, some will be tearful and some will be fun. Don't be dismayed if she is sometimes off colour this disease can knock the strongest of characters.
    Each day is a blessing to share and make memories and I hope the love you have for each other helps you see your grandmother and not the illness she bears.
    Big hugs to you.
    XXXX

  3. #3
    Forum Member hanginginthere's Avatar
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    Hi Mizzkl,
    There is never a good time to come to terms with this and we all go through a variety of emotions. I know my wife is scared at times when she sees me suffering and that is hard for me. But I have come to terms with it and have adopted the attitude that I can't change it so make the best of it (the advantage of senior years). I am sure your grandmother will be the same. Us oldies are more resilient than people think.
    The only advice I would give is to enjoy the time you have with her. Show her you care (you obviously do very much). Use this forum to rant and rave if you need to. We are here to help you through this.

    Bless you.

    Mike
    Nothing is impossible, the word itself says 'I'm possible'!

  4. #4
    Forum Member JAN Q's Avatar
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    Hi there I have just read your post to Mizzki what a lovely read, so caring and thoughtful, I sometimes get harsh remarks when I am a bit down and it is upsetting to say the least, when I am told pick yourself up and be positive, !!!!! when a cuddle and a sympathetic word is what would be much nicer. I live on my own so when a friend speaks to me on those lines I do wonder if they have any idea how we feel. Keep up your lovely messages on here and it wi surely make me feel better, xx Jan Q.

  5. #5
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    Thank you your replies are lovely and it's nice to hear from people who know how hard this is for everyone involved. it's nights that are the hardest! My brain runs away with itself thinking the worst. I think what makes it more difficult is we have never spoken about it. I take her to appointments and know everything but when we leave the topic changes. She uses an iPad to speak but her words are jumbled. She lives on her own so I quit my job and moved to where she lives so I can see her every day, its what makes me deal with this a little better.

  6. #6
    Forum Member Terry's Avatar
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    Hi Mizzki;

    Welcome to the forum. You are a real treasure to your Grandmother.

    Mnd People do not generally jumble their words and I was wondering:-

    Is she used to using computers and touch keyboards? Is the predictive text messing her up? Has she a water infection and has her CO2 levels been checked?

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  7. #7
    Forum Member Dvd's Avatar
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    Hi Mizzi .. Must say you are an exceptional person .. Leaving your job and moving to be near your grand mother .. Well done you .. My best friend has MND ..he has no family so I like you am looking after him .. he still has use of his legs and arms its just his swallowing is not good .. He eats a soft / minced diet and his speech is quite slurred .. we have a system at the moment staying 4 or 5 days at each others houses which is nice ..I live 30 miles away .. It certainly makes a big change in ones life .. Look forward to hear how things are going .. God Bless. dvd

  8. #8
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    Terri, her CO2 levels are low, is there a way around that? Thank you dvd, I graduated university in summer and got a job outright so it's a personal setback but she is my priority. I'm 22 so finding it very overwhelming. Sorry about your friend, it's hard feeling helpless and not knowing what to do. That's nice you can stay with him. Yes life has changed completely, hope you are getting on okay!

  9. #9
    Forum Member Dude's Avatar
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    Hi Mizzki You are remarkable, mnd sux don't it (I,m down with the kids lol). Who else is involved in your family, eg sibs and your folks ?. This illness takes a lot out of carers and I worry you will do too much for your gran. This forum will definately be of great help to you and your family. In the future you will obviously have to think about mobility and bathing requirements, best to plan ahead. Is grandmother in a bungalow or house. Keep doing what you are doing and ask us for any little bit of advice. Dude xo mnd pbp dia 2008.

  10. #10
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    Hi Mizzki
    I would be so proud of you if you were my granddaughter. You obviously love your gran very much and that will take you far. Your grandmother will feel your love and that will get her through. If you feel it over whelming at times , mnd connect are there to support you also , this forum is amazing and helps all us mnd patients. Mnd association visitors are also good for advice and support and will come and visit. I was diagnosed in July and my family keep me strong. Even if you need a rant make sure you use this forum. Bless you , you are obviously a kind and loving person. Chrissie (aka Suzie Wong) x

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