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    Scared

    Hi everyone. I'm Linda. My beautiful Dad was diagnosed with MND on 20th August. My whole life has fallen apart and I feel like I've been drowning in grief ever since. With my Dad I put on a brave face. We laugh and joke and I am there for him every day. I've dropped hours in work so that I'm able to support him with appointments and to help him and mum with all their day to day chores. But when I go home I am utterly consumed with fear about what my Dad is going to face. I think about him dying constantly. I'm emotionally and physically exhausted. I would do anything for my Dad. Anything. I can't possibly tell him or mum how scared I am or how tired I am. So I keep it to myself. I've never felt so lonely in my life.

    #2
    Linda C21 Welcome to the forum and so very sorry to hear about your dad's diagnosis. The forum is a great source of support and you'll see there are lots of carers in very similar situations.


    You don't have to keep all your fears and anxiety to yourself, there are lots of support services including MNDConnect who have information for family members and also people to talk to.

    You're not alone.
    ​​​​​​​
    Take care
    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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      #3
      Linda C21 as Linda has said the connect team can support you by putting you in direct contact with a local support volunteer. This will be someone you can talk to in complete confidence and someone who will appreciate all the various emotions you are and will in the future be feeling. Please think about making contact if only to find out what is available to you and the whole family. You don’t have to phone, you can email or use the PM facility on this forum.

      Best wishes.

      Comment


        #4
        Linda321
        So sorry about your dad’s diagnosis and the fear you are going through.I really hope your dad is linked into a hospice or palliative care team where you all should get some support practically and emotionally.

        Its good to share how you are feeling and totally natural to feel the way you are.
        I would suggest you seek out the support systems if they aren’t in place already for your dad, your mom and yourself.

        Many people on this forum have a parent with MND and there is support via The MND Association in so many ways .Check out their website.
        Keep posting and ask questions if you want to.
        Best wishes
        Mary

        Comment


          #5
          It is a shock but you can still make many beautiful memories. Start today and remember, we are ALL mortal!
          Copyright Graham

          Comment


            #6
            Hi Linda C21

            I'm so sorry to hear that your dad has been diagnosed with MND. The way that you are feeling is completely normal and please do know that you are not alone and we are here to support you in any way that we can. Please do give us a call on 0808 802 6262. Sometimes it can be really helpful to have someone on the other end of the phone to talk to that you don't know, especially when you feel that you can't talk to anyone else. We're a small team of 5 so please do give us a call for anything.

            The forum is also a fantastic place for support so please feel free to post and get support from the other members.

            Best Wishes

            Rachel
            MND Connect Adviser
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]

            Comment


              #7
              Hey Linda C21 try and not think about what hasn't happened yet, and concentrate on the present time. If your Dad is anything like me he will want to be as independent as possible by way of a coping strategy. Letting go of a loved one is harder than loosing them. We are here to listen. 🤗🙏😘😍xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

              Comment


                #8
                Welcome Linda C21 - it's grim news to be told isn't it. Well done being supportive. It's what really counts now. Just being there when you can makes all the difference. And helping to take to do all the *** that he won't want to do. Love xx

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                  #9
                  Thank you all so much for your messages and support. It means a lot to me that you took the time. Love, best wishes and thanks. 💙💙

                  Comment


                    #10
                    Linda C21 A warm welcome to the forum Linda.

                    Definitely talk to someone about your feelings - a problem shared is a problem halved, as the saying goes.

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

                    Comment


                      #11
                      Hi Linda C21, nice to meet you.

                      Really sorry about your Dad's diagnosis. Take time for yourself to grieve as well as supporting your parents. xx

                      Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

                      Comment


                        #12
                        Hi Linda. A bit late of me to reply to you I’m sorry. Welcoming to our supportive online community. I hope that by now you’ve plucked up the courage to ring the MND Connect team. As Mathew stated taking it a day at a time is what gets most of us through. I CV hope that you feel able to do so soon. Lynne x
                        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.

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