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 mother had always hated anything to do with doctors, hospitals, ill health, though in her long life she had had plenty of all. She steadfastly refused to use medication for herself except in extreme circumstances. And she made an Advance Directive - a living will. She told us - her offspring - her wishes, and she gave us enduring power of attorney. Her greatest wish was to "wake up dead" - that is to say to die, as her father had done, quietly in her sleep. But she wasn't allowed that.
Towards the end of her life her heart began to give her serious warnings that things were not well, and she was frightened. She did accept medical help for a while, but then decided to stop taking her medication - it was what she had always promised herself: she would let "nature take its course". Nature isn't always kind, and sadly she suffered a massive stroke. The blessing was that she was in her beloved garden when it struck. But it didn't kill her - just reduced her from being a lively, able, brilliant woman to someone who could no longer speak and only move a very small amount.
As a family we were blessed by her being admitted to a stroke unit that listened - they accepted her Advance Directive, they discussed it with us at length. We were able to have our "story" backed up by her solicitor and her GP because she had lodged a copy with them as well as with ourselves. One young doctor found it extremely difficult - I remember her saying that she felt that they could achieve a lot of rehabilitation for my mother. When I asked her what that meant she said, "We could get her sitting up in a chair." I said as gently as I could that that was exactly what Mother had dreaded - she was a woman with a brain the size of a double-decker bus and loved to be active. Sitting in a chair was not life for her.
We had some difficult decisions to make, because death was going to come quite slowly. But we were well supported, and I am as sure as I can be that my mother didn't change her mind despite the slow and difficult death she faced. It took her three long weeks to die, during which time we were all together with her, we were able to read to her, to share some times together. In the early days I believe she understood us when we talked to her and was able to indicate yes or no. She was wonderfully strong and allowed her many friends and relations to come and say goodbye. Some weeks after her death, my sister and I went to a visit a local care home where our aunt had lived the last long years of her life. She had had a stroke and had been resuscitated - to live a meagre life. As we arrived we looked at each other and said, "Here but for the Grace..." Actually, it was here but for Mother's clearly set out and communicated plans.
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