Wednesday, 10 February 2016
I have watched 'How to die: Simon's choice' , I wasn't going to and it was a very tough watch, although I support assisted dying in theory I am not sure I could have willingly gone along with that route if Chris had wanted to go that way. Simon's progression was pretty fast, he was strong willed, he knew his own mind, in spite of Chris's suffering near the end, he wanted to live so very badly, but I knew that last week he was reconciling himself to the inevitable. Although the law says in theory his family should be prosecuted for 'assisting' him to get to Switzerland, it was obvious it was his choice and his choice alone to go that route. In these circumstances that kind of prosecution should never happen.
The hardest part for me was hearing the Professor at Kings talking about respiratory failure and how morphine is given to ease the distress. When the GP tells you there is no upper dose limit for the Oromorph and that the body quickly needs more for the same relief, I knew in my heart that him taking morphine would shorten life and in a way it is a type of assisted dying, but only because it was the only way to ease his suffering. It was morphine that finally ended his life, a last attempt to take away the awful fear and distress my darling boy was feeling as his diaphragm struggled to function. I did not expect him to die right there, right then.
I do still feel a person should have the choice, when you have watched someone die of a terrible disease like MND in the most cruel way, I would not blame anyone for not wishing to live through that. Palliative care at the end of life can only do so much and even that type of palliative care inevitably ends with the inevitable, the end of a life.
My heart goes out to Simon's family. Their bravery in sharing Simon's story has raised awareness on so many levels.
Monday, 1 February 2016
I coped with Chris's birthday pretty well until the evening. I told Tam she could go out and that I would be fine on my own. It hit me though that birthday's are always a family affair with us, we all get together to celebrate each other's if we can and there I was, all alone, there was no family celebration, just me remembering happier days and missing Chris so very much. I did lose it for a bit. I haven't actually cried in a while, so I guess it was needed.
I am back to normal today, whatever that is. Yesterday though I had posted a couple of photos of Chris. One was an older one and one was a memory from Chris's birthday two years ago around the time he visited the GP about his limp. I was looking at them today and they both have Chris doing a similar pose and it suddenly hit me. In the photo taken two years ago there was such obvious muscle wasting in his arm, even though we hadn't noticed it at the time.
MND creeps up on a person by stelth. Chris's MND nurse said he would have had it a long time before he ever noticed any symptoms and I think she was right. It isn't till something happens to make you worry and vist the doctor that the path to diagnosis can even begin.
It actually makes me shiver to think that the signs were so obviously there and we never even noticed or would have even known what it was.
MND took many things, but one thing it didn't take, it did take that beautiful smile.