I have no idea how or where to start. I think I’ll just wander through my head and let the words flow. Or not. We’ll see.
Those who have followed our journey will know how determined I’ve been in getting my beautiful man the most dignified route off of this mortal coil possible. A vague and hopeful notion at the beginning which became an absolute after his ‘false alarm’ in August. No thin, blue blankets or dingy side-room, not when the view from our own, lovingly chosen bed, in our prettily decorated bedroom was so stunningly beautiful. No.
I’m sure I voiced this wish of mine but maybe not too loudly and probably not to Nige. What would’ve happened if I’d berated the notion of dying in hospital and then, due to no fault of ours, that was what we got? It so nearly went that way too. So I dug my heels in more and promised Nige he would never go back to hospital. He chose to stop the ineffective chemotherapy and we started visiting Dorothy House instead. I’m crying now at the memory of his face as we walked through the main door, into the waiting room with a sweeping oak staircase on the left and a huge open fireplace on the right. Every week I took him to see Steve for his physio, every week he went in tired and came out invigorated. We did that up to the beginning of December. Nige was genuinely fed up when it stopped but his exhaustion was so very acute that it became unsafe. I hoped it was a blip and that next week we’d be back to it. It wasn’t to be and he never asked about it either.
So it was just me at home really, with a little support from the boys. Things had to change at some point; Ann from Dorothy House told me that right from the beginning. I heard it all, took it all in and filed it away somewhere. “Carers, respite…” No; “Me, home, bed…” And in the end we were both a little bit right. Though I was more right (of course).
After Nigel’s fall on the 18th of December, he took himself up to bed. Although he continued getting up for the toilet, he never came back downstairs. The nurses still came though, to check his blood sugar levels and, slowly, they slipped into my life. I felt comfortable with them there, bathing Nige in bed and it meant that I could share any worries I had. It turns out I had quite a few…
They saw me struggling to get Nige to the bathroom – two days later we had a commode and a bed bar so he could pull himself upright. The commode was the biggest help yet when first offered one I said, “No, no, I’m fine…” It took me almost a week to succumb. Same thing happened with the Over Night Respite Care. Actually, that wasn’t really that helpful. Twilight Nurses? “Honestly, I’m fine…” In just a few weeks the bedroom resembled a ward, with a commode, bed bar, back rest, slide sheets, handling belt, ankle pressure mattress and a whole body mattress topper – you turn your back for a second!
In the final week carers were introduced. It started with a letter from Virgin Care telling Nige that he qualified for care… Then there they were, complete with file, three times a day (four, if I wanted). I know I would’ve got used to them but I didn’t have to. I think we had one complete day – maybe two. On the Friday he died, Anna knocked the door. The nurses had been around a few times to set up syringe drivers and Anna was dropping off more meds.
“I’m so glad you’re here. He’s not right, he’s been different all day.”
It started with no appetite. Then, at about half 4, his breathing changed. He was shaky, and sounded like he was straining. I told Anna that at first I thought it was serious but then I started to think that maybe he just needed to empty his bowels – it had been 12 days. Anna concurred that he was straining and did a sweep. He was more comfortable then, his breathing, still laboured, was less pained.
“I’m not going to say that things haven’t changed because it’s hard to tell but…”
“I know. I know. But at least he’s less uncomfortable… and he’s had a pretty blonde nurse put her fingers up his bum, which I’m sure was on his ‘to do’ list!”
I think we both knew that the beginning of the end had started. With Gabe at work and Harry in the garden, I perched on the bed and took his hand… His breathing went through stages, each one gentler than the last. As the tears fell he slipped away. I waited and waited for the next breathe… and waited.
“I wanted my family to be that but they showed me over and over that they didn’t want me. So that’s it; I’m done. I hate them all.”