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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...
We have nearly 32,000 members, and are actively enlisting those that are committed to supporting changing knowledge, attitudes and behaviours around dying, death and bereavement.
Sarah was nine when her mother died. Immediately shipped off to family and friends, she wasn't told what had happened until after the funeral. Now aged 50 with two adult children of her own, she talks about the life-long impact this has had on her.
Dying and death are very personal matters and as such this is a difficult piece to write, but as I firmly believe that sharing these experiences can help others I am going to give it a go.
I was nine years old when my mother died. All my life I had been aware she was not well, but as a little girl I knew none of the details, so I am afraid that my recollection of events is filled with supposition and thinly papered-over cracks.
Occasionally when mum hadn’t been too good I would be sent to stay with friends or family for the night, so when my father woke me up that morning and said, “Mum's not well, you are going to stay with Gordon and Sheila,” (my eldest brother and his wife) I only considered the fact I was to skip a day from school.
A neighbour drove me the five miles to my brother's house and knocked on the door. Sheila answered and I ran through to see my little nephew but overheard the neighbour saying, “Mrs Covell has passed on. Eddie needs you to look after Sarah – she doesn’t know.”
Even to this day my eyes fill with tears as I recall calculating in my head that 'passed out' meant fainting and 'passed on' meant my mum had died. There are not many weeks in my young life I can recall in depth but the week that followed is one of them. My brother's family and friends played out a charade of everything being OK while I lived in limbo, watching and praying I had got it wrong, but knowing in my heart I hadn’t.
The day of the funeral I was not supposed to know about, but of course did, I was sent to stay with yet another family and when I was brought back my dad was there and told me that mum had died. I don’t even remember crying, which is something that upsets me too. By the time I was allowed to go home a week later, the house had been stripped of any evidence she had ever lived there, my younger brother, his wife and young daughter moved in and my life changed forever.
Anybody losing their mother at such a young age must be affected by it profoundly, but for me to be denied a chance to say goodbye and share in her passing has been an issue I will carry with me to my own grave. It has, I believe, made me a very hard person who can walk away from anything without much concern for the consequences, and I have never had a long-term relationship or married as I don’t trust people not to walk out on me, however genuine their declarations of love may seem.
But as an adult you try to rationalise it: my father lost his wife that day and he, I do not doubt for a minute, thought he was doing the best he could for me by protecting his child from the bitter pain of death. But I now believe that to get to the other side of a bereavement you need to feel that pain, as it is preferable to the residual numbness that still 41 years later lingers in my heart.
You really don’t need to know much about my years 10 -23, just to be aware that by the time I was 12 my brother's family had moved out and my dad and I began our life alone. Fourteen years on from mum dying, my father was diagnosed with terminal cancer aged 68 and was given six months to live.
There was no question of dad going into a hospice as I was perfectly capable and happy to look after him at home. His deterioration was rapid and, helped by an amazing family GP and community nursing care, he was fairly comfortable most of the time.
By the end dad was having doctors' visits most days and nurses three times a day. Everybody knew he was dying and it was a case of every day being a bonus. But in the flurry of morphine, bed baths and dressing bedsores, nobody said anything to me about what to do when he died. I had it in my head that people died at night and was convinced that one morning I would come down, open the door and he would have gone. I had no idea what to do, who to call, what the protocols were even then, but as long as he died at night I thought it would be ok: I would wait for the morning nurse to come and she would know what to do. Dad had the audacity to die at 10.45am while sat on his commode!
In the bustle of ambulances, doctors and funeral directors, I sat there and realised I hadn’t a clue what my father’s wishes were. I had never been to a funeral before. The only conversation we had ever had on the subject was that once you were dead, you were just a piece of rotting meat that had to be disposed of. I had no idea that you could choose the music, service, flowers etc and dad's funeral was arranged in about 15 mins with a funeral director who was lovely but was trying to push things onto me I didn’t understand. Three cheers have to go to the Fire Brigade's union who came along and helped me arrange things such as who the coffin bearers would be - all firemen from dad's old watch, which was lovely - and who of dad's old fire service friends should be invited.
I have two children of my own, both in their twenties, and from them being relatively small we have talked about death, my will and who would look after them if anything happened to me. As they have got older, the talks have been more “technical” - type of coffin, no religious service, no flowers, lots of gin (I can’t emphasise this too much) and music. I have made a will, the contents of which are known to all involved, and introduced the executors to my family. I have given my daughter access to one of my bank accounts so she won’t be short of money to arrange things, and generally done everything possible to make what will be an awful time for them (I think so anyway - I think my children are quite fond of me!) as easy as possible.
Dying is part of life and experiencing a death is part of life too. I came upon the Dying Matters organisation by a twist of fate but cannot express in words how important its work is. Nobody should ever had to go through what I had to – the first experience of my mum dying was in a time where these things were handled differently and my darling dad did what he thought was best for me - I most certainly don’t blame him for anything, but it was a cruel thing to put a child through. But my father’s death was different: why didn’t the nurses and doctors who I came to look on as friends say something to me? I discussed everything from my dad’s bowel movements to his medication dosages with them. Surely a conversation could have been struck up about what to do when he died, a leaflet tucked behind the clock or the phone number of somebody I could talk to about it? I am a 100% sure that talking about your funeral and how you want to die does not make your life expectancy clock tick any faster! So talk about it, do something about it – write a will if nothing else - and then get on with living. It’s what life is for.
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