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 am 54 and fairly healthy and active. However, having seen my whole family (parents, brother) develop cancer (and in my parents' case, die) I have not totally put my head in the sand over 'death matters'. Yes, it's not easy to talk frankly about death for lot of people, but over the last few years with my involvement with a cancer charity, a palliative care ward in a hospital and conversations with a number of elderly people within the community, it has made the subject less likely to cause raised eyebrows.
My first experience of death was when one day in 1967 when my mother drew the curtains at home. I asked why and she said granny had passed away (she lived with us). My mother never showed any real emotion and simply went through the motions of sending me to stay with a favourite auntie while the funeral was arranged and passed by. Six months later my father passed away and this was a real blow to me as I knew I was the only man in the house now and at 10 years old had to be strong. Again, I was separated from really knowing how to grieve properly as I was sent off to be with that favourite aunt again.
Therefore my initial experiences of death were like the elephant that was in the room that no one wants to talk about. Many years passed but mum was never of the mind to discuss my granny or father's passing; my questions made no real difference. Then one day mum was not walking properly and went to her local doctor who diagnosed Phlebitis (swelling of the legs). Unbeknown to him (and he should have checked this really) she had secondary cancer. Unfortunately my mum was a person who kept things to herself and even an infected breast was not considered an issue, until she was in so much pain with her leg (it was now broken) she could not stand on it at all (note : she had been cycling on a fractured leg for some time). Finally, when admitted to hospital she was told she had cancer of the breast and bone and the leg that was broken needed fixing with surgery.
The treatment was medicine and radiotherapy on the affected areas and after two months mum was back home and trying to go back to normal life. She had said she would cope at home despite some difficulty walking (her leg was now pinned) but importantly mum could cycle again (she was 74) - that, to her, was more important than a slightly dodgy leg. A month passed and one day mum used her bike to cycle to the local shops but felt something happen when she started to cycle (a bit of hip bone had snapped off). I recall she sat at home all afternoon waiting for me to return from work. Very silent and very humble, asking to be taken to the hospital. We are entering end game time. The doctor at the hospital said there was nothing really they could do and told her to keep off the bike. This upset mother more than any pain she had.
Next we pass the summer period quite gently not really noticing much happen in anyway regards a change in mum's overall condition. Then we reach October and in one weekend the whole story changes. I had gone away for a short weekend and when I came home mum had been in bed the whole period. Sensing that action needed taking, I asked the hospital if she could be admitted. I persuaded mum to go in for 'tidy up' just so they could improve her condition. Well, a few weeks in Oncology ward and it seemed stalemate had been reached. Mum was not improving.
Her 75th birthday was celebrated on the ward with some relatives. Then one day I was told that mum was not able to be discharged home but she couldn't be assessed for LOROS unless she was home and the only alternative was to be sent to a Sue Ryder Home in the North West of Leicestershire. She was transferred here in November and the first week she was fairly happy at having her own room, overlooking the lake and church and the quietness of the place. However, one weekend she was very tired and almost unconscious and I was really panicking as I had never thought this last stage through. What did mum want for final send off, and how would I cope after she had gone?
The final day came and no one really knows when and how the final departing can be defined. Even now, 18 years later, the memory is not a comfortable to recall. I had been phoned early on the Monday morning of 29th Nov 1993 to go to the Hospice and arrived there to find my mother unconscious, breathing very raggedly and rasping with fluid coming out of her mouth. I reached over and held her hand and could sense that her life was coming to the end. The final hours were dark but she was loved and cherished by me.
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