Next Treatment Please

I just want to applaud you in how you have managed and coped but also for your honesty Allison , your posts have been no holds barred and telling it how it is . 

Our birth into this world is sometimes natural and easy just as nature intended with no intervention, for others we need medical help and that help is usually immediate, because it’s a new life starting .

sadly when it’s a life leaving this world emergency is not the first thing on the drained NHS resources.

I really feel you have highlighted the issues , yes we all want our loved ones and our selves to pass away peacefully at home , but for the vast majority of cases that is not the case . Our drained NHS just doesn’t have the resources to cope .

so where does that leave us , for yourself in the terrible situation that you have been in and I can truly understand what you have been through , did any of you including John benefit from that awful situation, I really don’t think so 

did Trevor’s passing in hospital make me feel better than him passing at home , I have to say yes because every thing was at hand when he needed it , would he have known the difference absolutely not he was unaware at that stage . 

Would I have preferred option 3 him being in the hospice absolutely, the end of life care would have been handled by experts . 

None of us can predict our ending but as you say the image you had predicted in your head certainly didn’t match the reality.

my wish for you and your family going forward is that in time you can push the last few weeks that you have endured as far back in your memory as possible and be proud of yourselves because you are all Heroes and your John was a true Warrior.

BFN

XXX Julie 

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

Allison xxxx

I think the information you have shared is essential to help others think about their options and to plan for the circumstances most of us tend to avoid thinking about.

Thank you but also please think of yourself and your daughters at this time.

Bri xx

Dear Allison - I am so sorry for your loss but I also wanted to thank you for your brave honesty. There are many of us following the same path and - difficult though it is to read this detail - it is so valuable to read your experience to help us make informed choices. 

Sending you love x