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    Hi All

    Hi all, not quite pleased to be a member and not quite over the moon to see so many lovely people on here but its very much appreciated to have some support over this confusing/emotional period. I am here because my mother was diagnosed just after the first lockdown and since then its felt like riding a rollercoaster through a hurricane. I signed up a while back but just dipped my toes slightly into a bit of voyeurism but as I watch my mum change rapidly ive took the step to introduce myself.
    My brother is in the medical profession which is very helpful, insightful and he is doing a grate job all round, but I feel speaking to people in the same position may help with the mental challenges ahead.
    Last week my mum had an NG fitted which didn't really go as planned so has been in great discomfort and now needs more assistance with meal times. For this reason I decided to move in and do overnights to help out. This is my 4th day here and its been a real eye opener at how difficult she finds almost every little task. She must have been really struggling but being a strong minded independent woman she has been covering to what extent. For 4 nights I have lay listening to her breathless fighting saliva and ultimately not sleeping. Of course everything is being addressed by a great medical team but when your looking on at this level of suffering it never feels fast enough.
    Today we have some new medication coming which should address the saliva problem and tomorrow the respitory team are bringing some apparatus for raised co2, not quite sure which type as yet.

    I know everyone will respond better to different treatments and its a game of fine tuning and adapting but ill be spending some time reading over other people stories which will hopefully give me some expectations and tips on how to perform better at the job in hand so thank you all

    #2
    Hello Kailee, well done for making this step. You will find we are a varied bunch who often use humour to get by so don't be offended if something you read seems heartless. It's the exact opposite. 😄x

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      #3
      Welcome to the Forum, Kailee.

      I have to say that you come across so well in what must have been a difficult first post to make.

      Is the NG tube just there as a stop gap while she waits for a feeding tube directly into her tummy - you may have heard the term 'PEG tube'?

      If you want to know more about the breathing equipment - called a variety of names such as NIV, BiPAP, Nippy - check out this site: http://mybreathing.mymnd.org.uk/

      I hope the new meds and NIV help your Mum. It can take time to find the right meds dose and most suitable NIV settings and mask, so be prepared for that.

      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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        #4
        Welcome Kailee. Lots of friendly folk here, to help and share your and our struggle.
        Each day is made easier with a bit of humour.

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          #5
          Hi kailee
          it's nice to meet you and I am so sorry to hear about your mum. We share all kinds of things on here so I hope you will feel welcome and join in.
          Denise xx

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            #6
            A warm welcome to the forum from me Kailee.

            I am so sorry for your mum's diagnosis.. there is such alot to take on board in the early days and it feels overwhelming.

            There is lots of emotional support and practical advice on here and there is usually someone to answer questions. It sounds like you and your brother will be a great support to your mum.

            Take care of yourself,
            Love Debbie x

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              #7
              Originally posted by matthew55 View Post
              Hello Kailee, well done for making this step. You will find we are a varied bunch who often use humour to get by so don't be offended if something you read seems heartless. It's the exact opposite. 😄x
              This makes me feel like ill fit right in

              Comment


                #8
                Originally posted by Ellie View Post
                Welcome to the Forum, Kailee.

                I have to say that you come across so well in what must have been a difficult first post to make.

                Is the NG tube just there as a stop gap while she waits for a feeding tube directly into her tummy - you may have heard the term 'PEG tube'?

                If you want to know more about the breathing equipment - called a variety of names such as NIV, BiPAP, Nippy - check out this site: http://mybreathing.mymnd.org.uk/

                I hope the new meds and NIV help your Mum. It can take time to find the right meds dose and most suitable NIV settings and mask, so be prepared for that.

                Love Ellie.
                Thank you Elli, this was my 4th night without sleep and truth be told after I made this post things came bubbling to the surface, I'm not big on sharing

                The NG is stop gap, the good news is that today the respiratory doctor came to trial a BiPAP and said he will now push for the PEG and generally when he does it happens quickly at short notice. This made me smile as its heartbreaking watching mum in so much discomfort and her already tricky speech has been reduced to noises.

                I am pretty prepared for the tweaks and balancing acts to come on the inside, its just when they become reality I have slight wobbles

                Comment


                  #9
                  And to Gary, Denise and Debbie, thank you kindly for such a warm welcome, truth be told I logged back on last night and became a little emotional at all these responses so couldn't reply. So instead I poured myself 3 stiff Gins and for the first time in days managed to sleep for hours, slight regret at 6:30 am preparing meds and feed but I think the sleep got me back on stable ground again today

                  Thank you all, I feel ive took the right step now, ill have a wee browse around over the coming weeks and maybe ask a few questions if I can't see what im needing

                  Iain

                  Comment


                    #10
                    kailee33 Don't worry - if you wobble, we'll catch you 🤗
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      I would say something but I only make noises myself 😀x

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                        #12
                        I haven't been sleeping either. Perhaps I should try 3 stiff guns! 😙

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                          #13
                          Gins not guns! 🤤

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                            #14
                            Hi Lain, it’s great that you found this forum and you wrote a smashing first post. To move in with your mum must have been quite a big upheaval but shows what a lovely daughter you are. It’s good that you have the input of your medically trained brother.

                            I’m sorry about your mums rapid decline but good to hear that she has a care team getting her some feeding and breathing assistance.

                            As a carer you’ll need to take care of yourself too despite being busy with all that you do for your mum. I hope that when mums breathing and feeding is sorted out then you’ll be able to get more sleep. One night in three would soon burn you out.

                            Take care, love Lynne
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                            I'm staying positive and taking each day as it comes.

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