After 40 mostly difficult, sometimes awful years, bizarrely I find that the all the horrid times have magically disappeared, and I’m rewriting our history with all the snatches of barely remembered good stuff. Some of it from long ago; but some recent too.
Stephen died at 6pm on Monday.
On Friday he still managed the 10, steep, steps out of our house - with rests and strategically placed chairs. And made it to the car to go out for his much-loved tour and essential, wheelchair tour of all his favourite shops and garden centre. This had become his lifeline and kept him sane as he got to see and experience the world outside of our four walls. He was in dread of the time when he would no longer be able. He directed the cooking of yet another amazing meal and chose the wine, although his appetite was not up to eating much of it. Food and drink were his main pleasures and he had repeatedly said that the day he could no longer enjoy them was the day to go...
Saturday saw him weaker. He managed to get out of bed and onto the sofa for just an hour. He ate just a big spoonful of crême fraiche, honey, two tiny biscuits and some chunks of melon. His breathing was noisier; he was agitated and struggling to know whether he wanted to lie down or sit up and wasn’t comfortable either way. Sunday he was less coherent; unable to finish his sentences and frustrated when I was unable to make sense of what he was trying to say, and sometimes confused. But he had no pain.
On Monday morning the palliative care nurse advised me to arrange the ambulance for the afternoon and bring him to the palliative care unit. (We are in France) By 3pm when the ambulance came, he was barely conscious, but still responsive. By 4.30pm he was in bed. I offered him a little water which he drank. I said could he look at me and he opened his eyes and fixed them on me as I showed him his favourite shirt that I had brought with me. I’m sure he reacted with his eyes. I perfumed his beard with his favourite cologne. I held his hand which felt cold and clammy and not that pleasant to be honest. So from time to time I let go.
I was sitting by his side, wondering what time I should go home to feed the cats, and looked round at him and realised his chest didn’t seem to be moving; his eyes were open and so was his mouth. I touched him. I called his name. I got a nurse, who called another, and they confirmed that he was dead. Just like that. Silently, peacefully, no obvious struggle and no pain.
He had wanted to die at home, but I think that, all said, an hour and a half in hospital right at the end would have been fine by him. He had arranged to donate his body to science - not for any altruistic reason, but mainly intending to spare me what he considered unnecessary stress and expense. The hardest thing was leaving him behind in the room for the last time.
Returning home to a house full of medical equipment and detritus was odd, but, from my point of view, I’m relieved not to be confronted every day with the room/bed where he died (I appreciate others may feel differently and would take comfort where I can’t). Yesterday was full of phone calls, and the pain of, unexpectedly, having to sort out transport for his body to the teaching hospital within a very specific time frame. I barely had time to think.
This morning finds me sitting here writing this and wondering what comes next...
