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...
I have worked in palliative care for over 15 years, so I know how important it is to talk about death and dying, except that is when it came to my own family.
17 months ago my Mother was diagnosed with metastatic disease. There was no cure, although she was offered oral chemotherapy which might have stabilised the disease for a few months. She opted not to have it, because for her, quality of life was far more important than quantity. Mum and I were very close, we were best friends. We shared so much, we talked on the phone everyday, we knew everything about each other. Everything that is, except what she wanted at the end of her life. I could not bring myself to talk to her about dying. Perhaps I was the one who had difficulty facing up to a fast approaching and devastating reality. I didn't want to upset her. Perhaps Mum didn't want to broach the subject and risk seeing me upset. We could talk about my Dad and what he might want and what we would do for him when it was his time, but I could never bring myself to talk about the "D" word with Mum.
I struggled to be all things to Mum. She wanted me to be her nurse but her daughter too. I didnt want to be her nurse, only her daughter. I couldn't tell her. I had to leave it to my husband to ask her what her wishes were at the end. My husband however had opened the door to allow Mum and I to talk openly about dying before it was too late. Mum was able to tell me that she didn't want to die at home and wanted to be in a hospice. I was able to tell her that I would do my utmost to be with her when she died. Mum died a few weeks later in a hospice, pain free and with dignity and with me holding her hand as she took her last breath.
Dad was in a nursing home with vascular dementia. He had good days and bad days and periods of stablity with his disease. Making the decision to put Dad in a nursing home was a very hard decision that Mum and I, in part Dad, took together. We discussed openly, together, and then at length with the staff that should my Dad have a catastrophic event such as a heart attack or a chest infection, that we wouldn't want him to be resuscitated. We signed forms and forgot about it. And then THE call came. The call came a year after Mum died and unfortunately whislt I myself was in hospital. Dad had collapsed. I could not get to him. The paramedics came and along with the carers, tried to resuscitate Dad. Dad was dead by the time they got to hospital, in fact he was probably dead by the time his head had hit the floor. Dad did not die with dignity as we had all wished for. He died having his heart pounded and needles stuck into him. Where was the dignity in that? Why would nobody listen to me, screaming hysterically down the phone , that was not what he or I wanted.
Dad had to have an autopsy to establish the cause the of death. We now have to go through the trauma of an inquest. When I saw my Dad, he was not lying peacefully having just died in his own bed. Dad was in a coffin, not looking like my Dad. He has the scars of an autopsy over him, and blood still oozing from the back of his head. It wasn't meant to be like that. I feel I let my Dad down, and have to hope that he was not aware of any this. The last thing I could do for my Dad was to give him a "good send off". I will scatter his ashes in the sea in Denmark, where the ashes of his twin brother were scatttered only months before.
Talk, keep talking. Talk as a family. If you can't bring yourself to talk, write them a letter, write your wishes down. But try to fight those fears of yours, as talking about death and dying may actually be the greatest thing you can do for the one you love and save a lot of heartache for the people left behind.
And when you are done talking to each other as a family.....shout loud to the professionals - tell them what you want when you die. Get the word out there. They have their own demons and at the end of the day, they are the ones that will be confronting death.
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