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 wife, Monica, died of cancer in Feb 2008 after experiencing malignant meloma followed by lung cancer. We had limited support from the hospice nurse in the area. We had a lot of verbal support over the phone but not ‘by the bedside’ if you know what I mean. We were allocated Steve, a wonderful, supportive person, who came here periodically and supported us with pain relief. We received practical support with a wheelchair, zimmer frame and bathing aids from a social worker. She was nearly always asleep at the time, but in her few waking times Monica sat at the computer and sorted out her finances, and her family tree.
One night she was really ‘out of it’ and I knew things weren’t right, so I decided to ring Steve. He suggested that it would help for her to go to the hospice to be ‘stabilised’ and return home. I wasn’t sure what this meant. She said no, in no uncertain terms. I told her that she owed it to her family and herself to go in, so she did, grumbling. On reflection, what I said was ethically wrong. The patient’s word is supposed to be final. In the end a dying patient’s wishes were over written by a palliative care nurse and her husband. But what are you supposed to do when you’re trying to make sure your wife gets the best care and everyone is kept happy?
When we arrived at the hospice, she was bedded down. The local GP was in attendance, and she was admitted. It was then decided that I should go home, so I told her that I loved her and that was still as beautiful as ever. She said I know you do, I love you too. I said I’d see her in the morning and that was the last time I saw her.
Discussions about what people want to happen towards the end of their life should be part of an ongoing dialogue between all interested parties and not a last minute crisis. I can see a time in the future when doctor’s surgeries will ring you up and say that they want to talk to you about end of life ‘stuff’. I don’t think we’re far off it.
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