Originally Posted by
79blue
Hi,
I don't know where to begin even writing this. I know 79blue's journey has touched many of you on these very boards let alone those in life who knew him.
I want to start by saying I was shown this board by him back when he was first diagnosed. Showing me how he felt and that he opened up to total strangers about the challenges he would face, these very strangers showing him nothing but kindness and support back. He told me how this support and this place to let out these feelings when he couldn't to those closest to him at the time helped him.
I kept watching his account and seeing as he updated some of you would ask him to keep you updated as long as he could. I can tell he appreciated the welcomed posts where he could say what he wanted to say without those nearest to him knowing.
I'm also aware he hasn't posted here in a while. Since his last post the main reason he stopped posting was how weak his right arm had become and typing became a chore for him, moving the mouse in recent weeks had started to become more tireful.
79blue was deteriorating. There was no doubt about that. Within the last month he was down to pretty much a whisper, making it harder to understand him without some effort. Everyone was willing to make the effort to help him feel as normal as possible. He had different pains, different problems each ranging from one end to the other. He was near the end of the month very lethargic.
Over the past fortnight, he spent more and more time in his room. Yes, watching matches and movies. His appetite came to basically nothing and needed his drinks held for him. Except during the night where he eventually found the giraffe bottle which allowed him that independence.
On Friday, he had another bad turn out if the blue. Even with his bipap ventilator on he was struggling to breathe. After some help arrived 79blue declined going to hospital and plans were put in place for more nurse visits. It was after this 79blue asked them to make him comfortable on Saturday when the hospice nurse came to visit.
He defied the disease. By making this request at this point 79blue flew up the middle finger to motor neurone disease. He chose to beat it to its final goal and he stubbornly stepped out before it could do it. He won, he still got to leave on his terms.
He had the best nights sleep he had in a long while.
79blue passed away peacefully in his sleep yesterday (31st December 2023) in his home. Myself, my husband and my mother were home with him. We found him together with the nurse who'd come to see if he needed more meds before the drive top up later that day.
When he showed me this account and the post he had made earlier this year. I felt honoured and happy. Honoured he wanted me to know these true feelings and happy to see so many wonderful strangers giving the uplift he certainly needed.
My dad was a wonderful man, as I'm sure you could tell. If there's one thing it's he loved coming to these boards. So much so he gave me the login details for it as I'm guessing he'd want me to finish his journey for you guys.
He never had carers in place. Me, my husband and my mother worked together in caring for him. We managed between the three of us and occasionally some neighbours to keep up with his needs right until the end.
I know he wrote on here about going to hospital for the end, that was still the plan when we spoke to hospice before Christmas as they were saying he was getting near that stage. However, as I've told you... Things changed drastically.
We did our best to keep whatever dignity, independence and normality we could for him. We kept him going between at least two rooms so he never felt like a prisoner in his bed, he had that small bit of freedom right until he left us. We even honoured his wishes right to the end. He was home, he was with us and he knew he was safe and cared for. I'm glad he still got to choose.
My mother and I checked on him periodically on Saturday, after one reposotion a couple hours after meds he didn't seem to want us again. He was comfortable and resting. That night when it had been hours I began to beg him to buzz me to show he was still there but nothing. Dad had checked out.
He was still breathing at 5am when I did a final check before sleep. I guess he kept his body going until we were all asleep. He knew I'd be awake then as he often buzzed me around that time. When morning came he was gone. He also knew the nurse would be checking on him in the morning. So it feels he somehow planned his timing.
The nurse was with us when we checked on him. Had he been just a minute later I would have found him on my own. This nurse came on Friday night, he saw how dad was and was worrying about him all that night he came twice on Saturday, once yo do the morning check and once to administer the meds after the hospice nurse has told them to. Honestly, I'm glad he had the same nurse each time. This nurse truly cared for dad so I'm glad he was on this journey with him and was the one by our sides when we saw he was gone and provided us the comfort we truly needed in that moment.
Honestly, I thought I had more time with him. But the disease decided otherwise and when he chose to be comfortable I still thought I had more time, at least over a day or so but sadly dad was truly done with the condition and the fight he had to put against it. I am hurting in a way I've never hurt before. The anticipatory grief with motor neurone disease has nothing on the full thing even when it's expected. My only questions I have to mnd is why did it have to progress at Usain bolt speeds for him, why couldn't it have been slower and like the average? Why him? None of it's fair..
To finish, sorry it's so long.. you have 79blue to thank for that. I guess I wanted to honour dad with you here by letting you all know the sad news but at least finishing off sort of where he left off at. Kind of in the way he would. Honestly, he half wrote his own eulogy so.. he'd likely have posted like this about his own passing. I have also posted an update on his gofundme.
I just want to thank you all for your wonderful support you gave 79blue. The kind words, the gestures everything. I know it meant alot to him and it meant alot to me watching it. Thankyou for being so kind with coming along on his journey and being the comfort he truly needed. You can all rest assured that in the end, he got to flip off the disease and choose to go before it took every single thing from him completely.
Also, to whoever once said they hope my mother would give him extra chillies, my mother sadly wasn't generous with the chillies. However, I did cut the beef perfectly to his liking once at least.
- Ian's eldest daughter.
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