Julie and Lyn
Friends and supporters forever. I did debate whether to be so graphic (and it could have been a lot more graphic) because I was never once told that the extreme symptoms could occur and had to deal with that at home. I was never told that if he was to be admitted to hospice, this or that might be the best time to do it as it could be too late. I didn’t know that the syringe driver and the stat doses would be an ongoing problem, I didn’t know about the waiting, phoning, constant repetition of “end of life help” would wear me down to the floor. I will never know if being at home was the actual right course, though I genuinely feel that it wasn’t in the end. I take comfort from it being easier for us to be around and the familiar home noises must have been some comfort to John.
I wanted though, to make people aware of the things I did not know and you don’t find on the internet as it should form part of the decision making. I wish the hospice had visited me to see how things were going with John and stepped in to advise me earlier. I will gently feed that back to them. Some nurses who came here were lovely, some were off hand and I was told on several occasions that they did not want to over sedate John, seriously this was the worst comment ever, it meant that he was aware until the end, and that hurts me dreadfully. I asked him, a couple of hours before he died, if you can hear me wink, and he deliberately winked. When the girls came in a few moments later, he did the same to them. It was a very deliberate act.
I know that this horror will calm down and we will be ok but please for anyone reading this and wanting to be at home, think about when and if it might be right to go to hospice, find out beforehand and make your decision based on what I’ve told you here. It’s raw and real and something to think about that you won’t find in the sanitised reports.
i don’t want to scare anyone, but Julie makes the point about birth and that’s what I was told, birth and death are processes that have to be gone through, some are easy and some are not. I don’t think there is anyway of knowing which you are going to get, maybe the fact that John’s dire prognosis and the fact that he survived it for so close to nine years should have warned us that we were dealing with a strong man, and that he would not go easy. I don’t know.
sorry for the long post, but I need to get this stuff off my chest. I hope it doesn’t upset those who will come after too much but I’m hoping that it will be useful advice when thinking about the end game. I can’t take the emotion out of it as it’s a totally emotional event.
Love to you all