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    It's been a while...

    Hello lovely community

    It's been a while since I last came onto this forum. This may be a slighrly longer read.

    Things had picked up for me and my partner...
    What was initially an NHS 24 call during the night, ended up being a 'we'll just get him checked over in hospital as his heart rate is a bit high for a sore stomach'. We cried together as we knew this may have been it and have heard about those going into hospital not coming out, so since diagnosis have avoided the place. So a casual ambulance arrangement into hospital, xrays displayed essentially a backlog due to severe constipation and an enema later and his pain levels decreased dramatically- all clear and a huge sigh of relief.

    Then we started getting set for bed (I was on a hospital chair next to him) when he started to get a bit agitated. Kept asking for different pillows and was getting frustrated after I tried the 5th pillow and he couldn't get comfy. Asked me to put the back of the bed down and shuffle him up the bed...upon returning to the seated position in bed he seemed even more agitated and couldn't concentrate on his eye gaze which he had previously been able to control pretty well (thankfully I was able to bring the smart grid to the hospital as he could only communicate by a whisper at this point). Before I knew it he said 'can you call the nurse' and then his lower jaw began a strange movement pushing out and in (I'm told this was him starting to struggle to breathe),...

    The rest is almost a blur. Dr's appeared an oxygen mask was on and I was taken to the side to explain that there were now respiritory problems and this was it. We had his DNR with us and I knew he didn't want to be around any longer and he firmly believed that he didn't want to extend his life living with MND. It felt so surreal! It all happened so fast. I'm still in shock looking back to be honest.

    They started lowering the oxygen and I sat and held his hand and spoke to him as his family made their way to the hospital. After they arrived, he lasted for 20 minutes longer and then he took his last breath with us all by his side. Recalling this is heartbreaking, but I think any information or insight is important to pass on.

    He lost his life to MND on (ironically) mnd awareness day (21st June).

    He survived 18 months from diagnosis (Januaey 2020). 34 years old (just). Gym goer, adventurer and full of life. Limb onset. Hand weaker then arm then both arms then wheelchair bound (but could still weight bare from bed to chair etc) and had only in recent months struggled to speak with full power in his voice. We had the eye gaze smart grid for only about 1 month.

    I don't need to tell anyone on here how horrendous this disease is. My grief started from long before diagnosis when I knew I'd be helpless in stopping progression or finding a cure and then I'd cry myself to sleep as I lay next to him knowing how miserable and uncomfortable he was. It was brutal to watch. At the time I remember it was also brutal for me to get 2-4 hours of sleep a day for the last few months and therefore sometimes I felt not fully present. But really the caring pains and moans aside, nothing will ever compare to what he was going through. I'll never know and yet I was with him pretty much 24/7.

    I naturally try to look back and think what I would do differently.... and the main thing would be to talk more...and discuss more with what happens when he's gone. He had 2 lines in his Will about what his funeral arrangement should be. I filled in the blanks and think it ended up being a fitting tribute to him, but often it's the harder discussions that you put off when they're around.

    Time and time again he would tell me how much he wanted it to be over and so in that sense I'm relieved he's no longer suffering. But it angers me that he even had to go through it in the first place and be taken so young when he had so much going for him.

    I wrote an article for MND Scotland about 3 weeks before he passed. With him being a private individual I tried to keep things as anonymous as possible, (even with a nickname on here) and I proof read the article with him to check he was happy enough with it (it was about MND from a carers perspective).

    I've now signed up to MND Scotlands midnight Ben nevis trek as its now time for me to give back to the community (while there is some fire in me) and to help everyone else going through this heartbreaking time.

    I've linked the fundraising page for MND if anyone wants to have a read.

    (I might have to do another post below this one with the Carers article link)

    Can I just thank every individual through this forum for their kindness, advice, love and compassion. The MND Community is really one of a kind and to have this safe space to scroll when looking for answers or to connect with others who can relate has been invaluable at this time in my life. I admire the strength of both sufferers and carers still going through this together and sending so much love....deep breath, one day at a time❤ xxxxx

    Help Tamara Church raise money to support MND Scotland

    Carers Blog link attached here (I think):
    Read entries from our staff, fundraisers and experts on a variety of issues relating to MND.


      Just had a thought.

      Not sure if it's controversial posting MND Scotland links on the MNDA forum here, but my thought process was that the awareness and funds are all going towards the same cause essentially....Crushing MND!



        Oh Tess. What can I say? I am so glad it's all over but the shock that it was so expected but unexpected. If that makes any sense. Surreal.

        ​​​​​​I know what you mean about talking about everything but it seems easier not to. It makes things real and it's easier to avoid that.

        34 years. Still a youngster. That's so cruel. Life has just got going.

        I send love and hugs to you and your family. Thanks for sharing those last moments.

        Denise xxxx
        when i can think of something profound i will update this.


          My dear Tess I send you my love and big hugs. Your partners horrible journey was so much better with you by his side. More big hugs



            Terrible news and my heart goes out to you. Time is all that helps. Stay Strong. 🕯️
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              Thank you for sharing....deepest condolences for your loss..🙏
              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.​​​​​​


                Hi Tess,Sending my condolences.So hard for you to watch your loved one (husband/partner)go through 18 months until his final passing at such a young age.
                Take care


                  Hi Tess. - all my love to you and your husband. I'm sorry your loss but glad his suffering is over. Yes please stay in touch - let us know how you're doing xx


                    Thank you Tess for taking the time to write your explanation. I’m really sorry for your loss and MND was very cruel to take such a young man in such a short time. Love ❤️ and hugs 🤗 🤗, 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.


                      Words fail me. i cannot imagine how your lives have been. So young! I can only trust that you will recover sufficiently to start your life over, at some time in the future.
                      Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


                        Tess Oh, I am saddened to hear that - heartfelt condolences to you, Tess.

                        I know it's trite to say, but honestly, D was blessed to have had you in his life.

                        Wishing you love, strength and many, many healthy and happy years of life in your future.

                        Love Ellie.

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


                          Hi I'm so very sorry for your loss Tess. I hope you have felt peace and harmony from being on here. Much love Catherine xx
                          Last edited by Daught21; 23 July 2021, 07:15.


                            Oh Tess, I am so very sorry for your loss.

                            Thank you for sharing this with us. D Was fortunate to have you and i hope that in time your happier memories of your time together will bring you comfort.

                            Love to you and do take care of yourself,
                            Debbie x