Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
My dad died of cancer on 3 October 2011. I happened to be on my way to see him that weekend with my three-year-old daughter, Jessica. He had received bad news that his treatment wasn't working. Although he tried to sound brave on the phone, I could tell he wasn't telling me everything, so my daughter and I set off from our home in Ireland to visit him in Norfolk.
In between us taking off from Dublin and landing in Birmingham he had been admitted to hospital. We thought he would have a blood transfusion and then leave, as had happened before. I chatted to him on the phone and he was his usual relaxed and logical self. "Oh, I'll be out tomorrow," he said, so I arranged to go and stay at his that evening (it would be late by the time we arrived) and to go and see him as soon as visiting hours began on Saturday.
Jessica and I arrived on Saturday afternoon and Dad was in great spirits, chatting away, and only bed-ridden because of the various medical equipment he was hooked up to. But there was something about what the way he was talking that made me think things weren't quite right. He loved to talk, my Dad, he would call himself garrulous. But he was only talking about things inside the hospital, not about his new motorbike or his new hot tub (which he treated himself to when he was diagnosed), not about the absolutely glorious unseasonal weather outside. Just about the inside of the hospital. He hated hospitals, this would not be his chosen subject. His focus on the world had suddenly become very narrow.
It was this and only this that made me call my brothers and tell them what I could see, that while he wasn't really unwell, just not in great health, there was something wrong and I just couldn't put my finger on it. My eldest brother came straight down: a five hour drive. I stayed with Dad until my daughter really needed to go to bed. My eldest brother arrived at the hospital shortly after we left, and when he returned to Dad's house I apologised for calling him. Dad seemed so well again that I thought I'd wasted his time.
On Sunday we went back to visit Dad. Again, he wasn't really unwell but there was still something niggling. He asked me if I was alright, and only now can I see that he was so much worse than he was letting on but that he was just worried about us still. I said I was fine and he asked me to hold his hand. I did. This is one of the moments in his last few days that I have relived over and over again with regret. I wasn't fine, I was scared. I could see in his eyes some glimpse of something and I didn't ask him or tell him anything, I just said I was fine. In hindsight there was time to have a whole lot of conversation and I didn't. I wish I had asked him how he was feeling, to tell him that I knew there was something he wasn't telling us, to tell him I loved him one last time, to ask so many questions.
On the Monday, Dad deteriorated very quickly and when the senior consultant asked him whether his "do not resuscitate" order was still valid, it hit us and him like a train. The nurses made us tea - then we really knew it was bad. But by then he was in so much pain that all he and we wanted was for the medical team to relieve his pain and make him comfortable. After his death, they apologised for "getting his pain relief wrong" - my Dad died in pain and he died before he was "ready".
I wasn't in the room when he actually passed, my eldest brother was, and I know that he saw something he wished he hadn't. He hasn't told me exactly what happened but I know it wasn't nice. I don't want to know. Knowing that someone you love with all your heart died in pain and mentally unprepared takes a lot of thinking to deal with. I tried to "come to terms with it" like people say you should. What I have actually come to terms with is that I will never come to terms with it, and with that I feel comfortable. My Dad was a very black and white person, and that has given me some comfort because I know how he would have processed it, in a very accepting way. Annoyed, but accepting. I can't go back and change this but maybe people reading this can act now to learn from my story.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66