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Thread: Aftermath

  1. #1
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    Aftermath

    I am completing the carer's section of the MNDA survey and finding it very difficult to provide an accurate picture. I feel the support we have received has been excellent: an MND nurse, a Macmillan nurse, respite every 12 weeks at the local hospice, day carers and night sitters provided through CHC and a 3 hour weekly break through the Carer's Trust. Despite all this, however, my life has changed completely and it has been almost impossible to maintain my old social contacts.

    My husband is 84 and now totally dependent. He has reached the stage where he is sorry to wake up each morning. Without wishing to sound a saint or a martyr (believe me, I am neither) my time with him is precious and I regret nothing. However I am starting to worry that all the emotions which I really don't feel now will start to surface when he dies and all this support disappears. Can anyone offer advice?

    PS I find the forum another source of help and wish everyone managing this terrible disease the very best.

  2. #2
    Forum Member Terry's Avatar
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    Hi Susan;

    A lot of the support will disappear. It's worth asking the people that help you now what support they might be able to give, I know that hospices normally do try to help after.

    Hopefully some of your old friends and any family will help.

    Hugs 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 keeps 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.

  3. #3
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    Thanks, Terry. This survey has made me reflect on my experience as a carer. i am not sure whether to start a new thread or to look for one from someone else.

  4. #4
    Forum Member Terry's Avatar
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    Start a new one , Susan
    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 keeps 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.

  5. #5
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    It is now nearly one year since I lost my beautiful lady who showed so much strength and dignity during her suffering with MND, being her full time carer I found a new strength and was determined to give her as much love and care as I possibly could. But I could never pay her back for the love and support she gave me in our 49 years of marriage.
    I have support from a very caring and loving family, I am however now finding it so hard to cope with the loneliness and empty feelings, I do attend a support group called "Stepping stones" at our local hospice once a fortnight and have had 12 1hour one to one weekly counselling. These have helped but I now know only I can be the man my wife would wish for me and have her courage to rebuild my life.
    I owe her that. Peter

  6. #6
    Forum Member Terry's Avatar
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    Very touching Peter,

    Hope you remember mostly the good times and the times you had a good laugh together.

    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 keeps 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 ccinjersey's Avatar
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    Hi Peter

    Trying to rebuild a new life for yourself after 49 years of marriage is not an easy thing to do, because it sounds like you, and your wife were each other's life.

    It also sounds like you already are the courageous man your wife would want you to be. Take it easy on yourself it really is 'stepping stones', you will find your way again with the help of time. Maybe join some local social clubs to help with the lonely, emptiness you're experiencing now.

    Wishing you all the best
    CCxox
    .

  8. #8
    Forum Member Barry52's Avatar
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    Peter your post is courageous and warming. I'm pleased you find the counselling helps and may I suggest considering attending your local MNDA branch meetings. I understand that a lot of former carers want to distance themselves from MND related matters. We have several former carers attend our meetings in Nottingham and not only do they get satisfaction from the friendship but they contribute so much advice.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  9. #9
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    Hi Peter,
    You are a wonderful man and I know your wife would be very proud of you. Forty nine years is a long time to be with someone and your caring and loving family will be a great support to you, just as you supported your wife.
    I'm glad you're getting some help from your local hospice. I think you're very brave to voice how you feel and I know you'll get stronger.
    Take care.
    Bern x

  10. #10
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    Your response, is like a kick up the bum but put in such a lovely caring way,

    Terry, you remind me to try and remember the good times to over power the negative ones which can and have been so destructive,

    ccinjersey, thank you for those words, you've motivated me to continue to try and rebuild my life.

    Barry5, you are right, I know I have so much to give others and using my experience will help them and in return give me a purpose which I am sadly lacking.

    To you all, I am sitting here at home by myself but you are looking over my shoulder and I can feel you here from your words of advice and comfort. This is a reminder of where we can bare our souls and share our darkest moments but also the dreams of a future.
    Bless you. Peter xxxxxxx

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