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    #16
    Hi Tess, every story is a sad story when it is linked to MND, it took a while before my husband accepted that he had MND and was able to tell the people closest to him about his diagnosis but once people knew they were able to treat him with dignity and respect not fear of the unknown.
    I know from being alongside my husband that it is a very lonely place respecting his wish to keep the diagnosis a secret and once people knew about the intrusion of MND in our lives we were able to accept support.
    There is no good time to share the news of MND but you are in this journey and your husband maybe is unaware about your need for support or your fears if you are being so strong and hiding them to protect him.
    Try explaining to him that the time may he coming that you need to speak to those closest.

    Much love your way
    Xxx

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      #17
      Thanks for your response Jane, yes all very difficult dealing with given respect and weighing up what the right thing to do is.

      Update: We have shared the news with the family on Monday this week, his mum, dad and sisters.
      The most horrific experience. He held it together quite well and had such courage to get to this point. He sobbed in my arms once they left. A very emotional week for both him and myself, lets say I've slept in every morning this week! Lots of upset all round, but the relief for him has been immense and I'm happy that he doesn't have to live in secret almost anymore. They have all been so supportive, if anything still in the shock phase, but then again me and my partner have had a long time to come to terms with whats happening in comparison to being given an information overload in one go.

      If I can give any advice to anyone viewing this who is in limbo of whether or not to tell your close family or friends, it is 100% worth it, the support, the love and the friendly ears, not to mention the weight lifted that you do not realise you have been carrying for so long.

      Tess x

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        #18
        Such a relief for you both Tess, a weight off as you said.

        I can understand why it was such an emotionally draining week but now you can move forward, and with extra support.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          Phew!

          Well done you two.

          I haven't commented up to now because it was such a personal decision. But I am so pleased and relieved you've told your family.

          Good luck for the future.

          Doug

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            #20
            Again reverse order so I have to scroll through all posts to arrive at the most recent.

            barry
            I’m going to do this even if it kills me!

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              #21
              Originally posted by Barry52 View Post
              Again reverse order so I have to scroll through all posts to arrive at the most recent.

              barry
              If you click the Latest Activity tab at the top of the page, posts are displayed latest first.

              Posts displayed latest first (2).png

              Love Ellie.
              Last edited by Ellie; 12 July 2020, 16:51.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                #22
                Thanks Ellie,

                I was having a Luddite moment.

                love Barry x
                I’m going to do this even if it kills me!

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                  #23
                  Hello Tess I’ve been keeping an eye on this post and am pleased the family now know. We all react differently to the news and as Doug says it is a personal choice and you have to accept it yourself first, but it will get easier for him, still difficult but easier. My wife tells Anyone and everyone now, and I’m not bothered and in someways takes away the pressure of pretending it’s something else. When he’s ready he can join the forum for himself, best wishes S

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                    #24
                    Hi Tess

                    Just read your last post. I’m SO glad your partner has had the strength to share his diagnosis with his close family and is feeling relieved that he has.
                    Keeping it a secret just leads to one lie after another and it’s additional stress you could do without.
                    Wishing you both much love xxx

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                      #25
                      Hi Tess,
                      it's a really scary thing to have to tell people. Almost as if saying it makes it even more real and unbearable. Having to see the way people react each time is tough too. This may sound silly, but if he is reluctant to tell family, would writing a letter be easier? That way he doesn't have to see them and it's a bit more detached. Writing just 1 letter and giving it to the whole family to read, or sending 1 email to everyone. And then you can add that you don't want sympathy or pity (if that's something he's worried about), but it's just so they are aware. Good luck!
                      Humaira x

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                        #26
                        Yes a relief indeed all round! Yet many hurdles still ahead....mind you having not seen faces up till now with Covid, the family visits have been exhausting!!

                        A very personal decision but anyone who is battling this and in a relationship or even with family looking after you, will know already the strain this disease can have on the relationship. From decision making, being respectful of one another, listening to one another and let one another grieve in their own way...it has certainly come with its challenges.

                        Given that I'm the 'carer', often I do have to think of, if it were me in the other seat and the frustration involved....It's tough going, especially as no two humans may go about things the same way.

                        Tess x

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                          #27
                          Hi Tess,

                          I am so sorry you are in this situation but well done for respecting your partner's wishes.You are a loving and devoted partner. It is very tough situation for you as you're not getting the support you need.

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                            #28
                            Drama queens are us 😂 x

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                              #29
                              You on the Wacky Baccy mate?? 🤣🤪
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #30
                                Every day my friend, living life how I choose till the end. x

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