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Thread: Hard

  1. #11
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    Hi all. I can't tell you how grateful I am for your very personal expetiences. Pen, I used to follow your posts before I became a member of the forum. I could relate to much of what you were saying, so I was so pleased you replied. Thank you, my heart lifted when I read your response and I had a really good day with Dad. Thank you for also sharing the last few days. My very best to all you lovely people x

  2. #12
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    Dear Skipton,

    a lot of very sensible advice and some touching stories have been posted in reply to your question.

    I am so sorry that your father is suffering from MND.
    I know. It's hell.

    My partner died of MND in August. I had been caring for him for half a year by that time (he got the diagnosis MND in February).

    My partner was a very active person: he liked walking, cycling, and he did a lot of housekeeping. And many other activities.

    It was very frustrating for him to have everything taken away from him.

    Sometimes he vould vent his anger. I would then ask him why he was angry with me but he explained he was not. He was just so frustrated that he couldn't do even the most basic things anymore without help.

    I made a vow to myself that I would never return his angriness by becoming angry myself. After all, he was suffering from such a terrible disease and he was so dependent. Sometimes this meant I just had to bite my tongue. But I succeeded in keeping calm 99% of the time. In a few cases I slipped but not to a large extent. I would then explain to my partner that the strain was becoming too much for me as well. He understood.

    These MND diseases are very difficult to deal with. You have to adapt all the time. Just when you think you have reached a certain plateau, the next deterioration takes places.
    This exacts a terrible toll on the patient, his carers and the relationship you have.

    In the end my partner seemed to accept that the end was near. It came sooner than expected nonetheless but he knew he was loved and cared for by people who would give anything they had just to keep him around.

    In the funeral card I had written these words: "Sweetest (name), this terrible disease has taken everything from you, except your love for us and our love for you."

    Please be kind to yourself. I had a lot of guilty feelings after my partner died (I should have done this, I shouldn't have done that, etc.) but I am now beginning to realize that I did the best I could and the few slips I made are easily compensated for by all the positive contributions.

    I hope this helps.

    Love, Willem
    Last edited by willem3069; 2nd December 2018 at 10:18.

  3. #13
    Forum Member Kayleigh's Avatar
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    Two short words stood out for me from Willem's post about what it's like for those suffering from MND and their loved ones... 'It's hell'... and inspired me to write some sombre words.

    It's Hell,
    When all is said and done,
    when all the positive spin has spun away into another Galaxy,
    when all the sugar-coating has cracked and melted away,
    we are left with broken hearts and cold, harsh reality.
    It's Hell on Earth it is, every day,
    yes, every day,
    and there's no escaping reality.
    Some may be on 'a journey',
    but others are trapped in a dark pit of dispair, continuously.
    It's devastating and it pains me to say,
    that for many people who are affected by MND,
    it's cruel and horrifically ...
    it's Hell!

    (My sobering thoughts as an ordinary wife and Mum with MND)

    Kayleigh x
    Last edited by Kayleigh; 3rd December 2018 at 00:13.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  4. #14
    Forum Member Terry's Avatar
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    Well wrote Willem;

    We do get agree, both carers and patients, it's important that it's not taken personally and that one of you bit your lip, so it doesn't escalate. Maybe try to talk about it a hour later or so to see why. Mind you trying to explain things is so hard as they are normally complex and it's many times harder when you can't talk.

    Love Terry

  5. #15
    Forum Member Kayleigh's Avatar
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    Good idea Terry! - Calling 'time out' when things are getting heated is a great suggestion.

    Love Kayleigh x

    P.S. Love your much anticipated festive avatar.
    You were a cool cat as TC and now you are our very own sweet-talking Santa!
    "Ho, ho, ho, Merry Christmas everyone!"
    Last edited by Kayleigh; 2nd December 2018 at 23:47.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  6. #16
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    Willem, Kayleigh, Terry

    All so emotively, beautifully, and well said.

    Much love to all effected by this illness

    CCxox
    .

  7. #17
    Forum Member Kayleigh's Avatar
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    Dear CC, I appreciate your kind words. Many thanks. Kayleigh x
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  8. #18
    Forum Member Kayleigh's Avatar
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    Hello All,

    After the sombre mood of my post earlier today, I though I would write something more upbeat, especially as Terry cheered me up with the launch of his happy Santa avatar this afternoon - Terry, you always know how to put a smile on a girl's face!


    No need to always be sad,
    because it is true,
    the great folk at the MNDA,
    will always support me and you.

    Many thanks to everyone on this forum,
    for always being so kind and caring.
    We always support each other,
    despite our woes and suffering.

    Also, many thanks to the MNDA,
    for all the work that they do.
    Merry Christmas to the MNDA folk
    and everyone on this forum too!


    Kayleigh x
    Last edited by Kayleigh; 2nd December 2018 at 23:49.
    July 1969 science enabled mankind's first step on the Moon.... over 49 years later and sadly still no scientific breakthrough to cure MND.
    Trying to take one day at a time ..... but it's not easy!

  9. #19
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    Dearest Kayleigh,

    your first poem hit home hard. But your second poem brought a smile to my face.

    I love it!


    Yours,

    Willem

  10. #20
    Forum Member Newbie17's Avatar
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    Thank you for your poetry Kayleigh. Your words, the good and the bad are all so very true.
    Loving the banter too!

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