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
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
Comment