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Supporting and dealing with my Mum with MND.

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    Supporting and dealing with my Mum with MND.

    Hello my name is Ben (43) and my Mum (65) has MND. We are now at the stage that my mum cannot do very much for herself. She has very limited mobility, almost to the point of no mobility. She can mouth words but it is very difficult for her to get the sound out. She still eats small meals often, as she struggles to breath if she eats to much. Me and my sister along with my mums partner look after her between work. She also has carers.
    l suppose I’ve come on here to see if other people have the same feelings and emotions and how they have dealt with them.
    I do my best to get her out, organising small trips with my family. I like to give her things to look forward to with quiz nights and race nights. It’s just not enough though. I can’t tell her everything’s going to be alright. It’s heartbreaking to see her deteriorate and see the pain and frustration in her. I can’t stop thinking about what she must be thinking. All the things she’s not going to see or do again, not seeing my kids grow up.
    We try and stay positive and deal with whatever comes next. I try and comfort her, make her laugh and show her as much love as possible but it doesn’t help me from feeling so hopeless. This disease is so cruel.
    Thanks for listening Ben x

    BenJ A warm welcome to the forum Ben, thanks for posting.

    Honestly Ben, you're doing everything, and more, to make your Mum get the best out of life - she couldn't ask for more.

    Sending you hugs today for being a wonderful son and I'm quite sure your Mum is so proud of you 🤗🤗

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


      Hi BenJ

      I am in the same boat with my partner Thomas.

      He has just lost his ability to speak clearly and I am not very good at lip reading.

      The breath and swallow is similar. All you can do is take the little joys on a day to day basis.

      Tell her you love her and reminise too.

      We listen to music of our favourite era and try and keep as up beat as possible. He also listens to Audible.

      But it is hard, when your heart is breaking. I also can't say, everything is going to be alright. But try and make each hour/day as good as possible.

      Watching old favourite movies and just be with them.

      Binning food because he can only eat small amounts, so sad. BUT they are still here in this moment.

      So I act the clown a bit, to see if I can get his eyes to twinkle.

      I get weekly phone calls from Hospice Family Support, just to chat for an hour. As there is no family near by.

      I am 48 and Thomas is 58.

      Best wishes

      Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


        BenJ Btw, does your Mum have/know about a text to speech app?

        Might she get a feeding tube and/or a machine to help with her breathing, if necessary/helpful? xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


          Hello Ben,

          Really sorry to hear about your mum and I wish you all the very best.

          please take comfort that you have a community here who understand what you are all dealing with and can offer you help and support.

          Take care,
          Foxes Never Quit 💙


            BenJ - sounds to me that you are doing an amazing job of keeping your mum amused, occupied and feeling loved.

            It is heartbreaking to think of what we may miss out on. I have two teenage daughters and can get quite down if I think about what I might miss out on. But instead I live each day to the max and try not to dwell on the negatives. It sounds like you are helping to do that with your mum too.

            I hope you find this forum a good source of comfort and information xx
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


              Welcome Ben from the best bunch you'll ever find 👍🤗😁😀xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                BenJ ahh Ben, you are doing a great job helping your Mum. As everyone has said above, keep doing what your doing and supporting yourself, your sister and your Mums partner. Sending my love to you all.xx


                  Bless you Ben it sounds wonderful what you are doing and we all agree it isnt easy. Your mum must feel so loved. You can only do your best and be there for her whenever you can.

                  Lots of love and hugs to you and your family.
                  when i can think of something profound i will update this.


                    Thank you for all your lovely comments, You’ve all been very kind. I will take on what you all said, you’ve advice and take each day at a time and try and make it the best it can be for my mum.
                    I love the fact that I’m in this group and have somewhere to come for support and hopefully support other people.

                    Enjoy you’re day Ben xx


                      BenJ a late welcome from me. The positive from your post is that your mum has seen you grow into a kind and caring human.
                      Look forward to hearing more from you 👍🏻xx
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


                        BenJ welcome to the forum. From your post it sounds like you are doing the very best you can for your Mum, as a parent she will take great comfort from that.
                        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.


                          Hi BenJ
                          I'm sorry to hear of your mum's difficulties. It's so hard to see the deterioration and I've felt useless at times as there's so little I can do to help (my Dad has bulbar onset so has a lightwriter to speak and uses a feeding tube). I feel a bit like I'm grieving in reverse but I try to remain grateful for what he does have (his mobility currently). I'm trying to accept that I'm doing all that I can do. If there was anything more I could do then I would be doing it.

                          When people tell me how much I do for my dad I always think it's not enough. It's hard to accept you are doing everything you can but you really are and I'm sure it means so much to your mum to have you there supporting her.

                          Try to take care of yourself along the way as well.