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DAD - MND diagnosed now. What next?

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    Originally posted by Mary C View Post
    Hi PV
    The dilemmas we who have MND face daily are not only personal to us but impact on our loved ones.
    I too chose not to continue with the NIV as found my sleep was more disturbed wearing it.Of course this may impact on my breathing sooner rather than later but I hated wearing the mask and opted for better nights sleep without it.

    I wish I could protect my family from watching my decline but as they know I hope to end my days at home then there is no choice.
    Each one of us is on our unique journey and while I am still up to it I intend to make the most of each day.When our bodies are almost worn out no doubt there is the likelihood of umpteen physical problems with breathing, infections etc.

    I really hope your dad has a peaceful day and I hope you are confident in the hospice team keeping your dad as comfortable as possible at this stage.
    Your poor mom is grieving too for the man she has loved even though he is still here life has changed drastically for them both.She no doubt is feeling lost and has her emotions to deal with.
    It’s so hard for you PV watching both parents trying to cope as well as dealing with your own feelings.Love hurts at times.
    Thinking of you
    Mary


    Mary C

    This is the reality, we are riding the highs and lows with Dad, hoping each time the 'highs' are longer...

    The NIV definitely has to be a personal decision. He hated it, felt stressed, really uncomfortable, and that he had that 'loss of control' feeling - a machine breathing for him, doing something his body has done automatically for 82 years... The nurse team said that he had to weigh up feeling stressed the last few months of his life, or, feeling at least there wasn't yet another uncomfortable thing he was enduring, having some peace and control over his body, his choices about what works for him.

    I have to admit it was noisy, he couldn't hear us (partial deafness) and we couldn't talk to him... but I know it works well for others.

    That's what it is all about - keeping him comfortable, reducing his stress as far as possible, quality of life.

    Its hard seeing my Mum so grief-stricken. She has been so stoic up till now. I am 'compartmentalising' because I can't carry on if I stop to think about losing Dad, even that horrible feeling I am 'losing' a bit of Mum too, I feel I can't give in to grief...

    Thanks Mary
    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

    Comment


      Originally posted by matthew55 View Post
      I'm NIV free but I think my hands will go before my breathing. πŸ˜‰πŸ€—πŸ˜πŸ˜xx
      matthew55

      You give me hope that Dad may have more time with us than the Doc's think... because him refusing the NIV was a real blow to all of us... xxx
      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

      Comment


        Originally posted by Positive vibes View Post

        Mary C

        I can't carry on if I stop to think about losing Dad, even that horrible feeling I am 'losing' a bit of Mum too, I feel I can't give in to grief...
        You are an amazing strong woman and we all wish that we had a daughter like you. Very big HUGS
        Richard
        Richard

        Comment


          Has anyone heard from Positive vibes? She has been such a prolific poster and it’s three weeks since her last post. I and I know many of you have been sharing the pain and anguish she is going through. If anyone has her private contact details please let her know we are thinking of her. Thanks.

          Richard
          Richard

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            Hope for the best but be prepared for the worst. πŸ™xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              Hello all

              Sorry not to post for a while, it has been a very stressful and emotional time....

              I am sorry to say that Dad lost his brave battle yesterday against this cruel disease. Doctors had thought we would lose him on Tuesday, but, his strength and resilience has amazed us all. We had all been practically living there since then, LOROS were incredibly good to him and to us, but we are pretty exhausted now...

              Hasn't started to hit me yet, we are still stunned, and it is hard to feel he isn't there anymore, sitting in his favourite chair watching his beloved black and white films.

              It was really difficult this week, he couldn't really move, speak, eat, etc. but there were times he rallied, and could give a slight squeeze of our hand when we held his hand, or a slight blink to yes or no questions. We had the luxury of time to say we loved him, what he meant to us, to thank him for all the things he'd been there for, to share happier memories and times, and get things off our chest. Not everyone gets that chance to say goodbye.

              We were chuffed when we were all chatting about the daft things we did, the childhood holidays, and big smiles from us when we got a hand squeeze or blink that he heard us.

              He had the chance to see us grow up as adults (mostly grow up?), watch his grandchildren grow from tots to adults, enjoy retirement and his home with Mum for nearly 60 years. I only hope I get as much achieved, and receive as much love, and gratitude over this week, as he had.

              And that's what matters in the end, the people that remember you and treasure your memory, and love you.

              Love you to bits Dad, be at peace now xxxx
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

              Comment


                He is at peace. I know your pain and my heart goes out to you. RIP Dad. πŸ™xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment


                  Rest in peace dad of PV, and love to you PV with a big hug xx
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

                  Comment


                    I send my utmost love to you and your family. Your father was wonderful and has rasied an incredlby remarkable daughter X.

                    Richard
                    Richard

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                      Positive vibes So sorry for your loss.

                      Heartfelt condolences to you, your mum and your brother.

                      Your dad was truly, truly blessed to have had you fighting for him every step of the way. Your unconditional love for him shone through with every word you wrote about him.

                      Wishing you much strength during this difficult time.

                      RIP Dad.

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

                      ​

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                        Sincere condolences..I kept looking on here for your updates.The love you have for your dad shined through in all your posts.May he rest in peace.
                        Mary x

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                          Positive vibes so sorry for your loss πŸ™
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                            Positive vibes my heartfelt condolences to all the family. You are a remarkable lady who’s love for your dad did indeed shine through. That hand squeeze is a very special moment to be treasured along with all the many wonderful memories you have of a very special dad.

                            Comment


                              Positive vibes . I am sorry to hear of the loss of your darling dad.

                              You are a wonderful daughter and I hope, in time, the precious love you shared will bring you comfort.

                              Love and hugs to you and your family,
                              Debbie xx

                              Comment


                                Originally posted by matthew55 View Post
                                He is at peace. I know your pain and my heart goes out to you. RIP Dad. πŸ™xx
                                matthew55

                                I did a lot of my grieving whilst he was still with us, then when he was at LOROS, in the end it was so sad, but a relief that he wasn't suffering any longer, thank you xx
                                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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