Just that. I'm still in shock. Haven't slept (well didn't go to bed till 4.45, got up at 7, and slept fretfully, so please excuse any mistakes).
I don't know what to do, or how to feel. I can't bear that his last year was spent in abject misery.
He was going to see the GP about double vision the last time I saw him out of hospital, and then he was taken to hospital with a suspected stroke. It was confirmed, then. He was treated, discharged, fell over, went back in, told he hadn't had a stroke and that it was 'psychological'...this wasn't what killed him, but it's all I can think about right now.
We (my parents, sister and I), spent months trying to cut through medical red tape. He couldn't be discharged because he couldn't lift a cup, couldn't walk, had slurred speech, etc. After numerous MRIs, lumbar punctures, etc, it was found he had damage at his cerebellum, and this caused his motor problems, but with rehab and physio, he may regain some function and some independence.
We were assured he would not get any worse (and he didn't), and he went to a specialist hospital. Then lockdown. He was transferred to a care home. Rehab/physio stopped.
A couple of weeks ago he was admitted to hospital with a UTI (he also had a catheter) and dehydration. It was discovered that he had lost the ability to swallow and had lost over half his body weight (in about 6 weeks). He was given a NG tube.
The end of last week we were told that he had developed aspiration pneumonia. He was treated with different antibiotics as they fought to treat it.
I saw him Sunday. His bloods had improved slightly, but were still abnormal, He made a loud growling noise (obviously he couldn't talk due to the NG tube), and I asked questions and he shook his head, till I asked him about pain, when he nodded. How fucking awful to be in pain and not be able to communicate it.
Yesterday my sister phoned to say that we needed to go straight away. I am eternally grateful to the women who stepped up and helped out with looking after my dd. He was a different man. He couldn't respond. I held his hand. I told him we loved him and were proud of him, that he was going to be fine (why the FUCK did I say that? It seemed like the right thing to say and I kept repeating it, although I wanted to tell him to fight!!!!)
I played him some of his favourite music (though my sister kept telling me not to in case I disturbed the patients on the ward (he was in a side room, and it was a little mobile phone ffs - at that moment, my brother hearing music, for the last time seemed more important, maybe I'm selfish, I just don't know anymore).
He died one hour after we left. The nurse said his breathing was the same as that morning, and we'd been there for hours, and they'd call us if it got worse (we're 1.30 hours away, so would never have made it back in time, and he went too quick anyway, he died between checks).
One strange thing happened. I took a lot of photos of him. I don't know why. I guess I wanted to hold on to him. When I got home I couldn't find them. I plugged a USB cable from my phone into my laptop, but it couldn't see my memory card. I took my memory card out and put it into a bigger card thingie and put it into the slot in my laptop, and my husband's laptop, tried several bigger holder thingies. None could see the memory card, not even to format it. I went hysterical. My son texted me, and I told him to go away, my mum phoned and I ignored her, I stated crying....I later discovered that the time this happened was the EXACT time my brother died. I know there's probably a reasonable explanation, but nothing happened to my memory card, and the really strange thing - there are 2 photos that survived, somehow saved onto my phone's memory, a photo of my brother, mum, dad, sister & me - yesterday, and my mum and sister with my brother.
Thanks for reading if you got this far.
He was the kindest, most wonderful person. We were so close. I am tortured that his last year was a living hell, and for all the experiences he will never have. I feel so guilty for the arguments we had, and that I never told him how grateful I was for him.
He looked after my DD when we went to her sister's funeral, that was so important.
He was 44 years old