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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...
I should explain that my son, Neil, died four years ago at the age of 35, from a sarcoma. He had first been diagnosed five years earlier, although we, that is Neil, myself and my wife, Dorothy, (pictured below) had been told that the chances of survival for five years were only fifty-fifty. No further reference to dying was made by any medical professional until two days before his death, when Dorothy and I were told, in Neil's hearing, that he would not be revived if he suffered a heart attack.
This information was given without any forewarning or follow-up. At no time did Neil or the two of us have any discussion with any professional about likely outcomes, nor was any offer of support given. Because of this, we lived in hope, probably long after there was, in fact, no hope. Neil was put to the trouble of long journeys to attempt to take part in clinical trials, when more realistic information may have saved him what were, in fact, fruitless journeys which were emotionally and physically draining.
As a family, we were not able to plan anything in advance. We had hoped to make Neil’s life as beneficial and happy as possible, but in fact most of his last six months were spent in a fruitless search for a cure, which denied him the opportunity to enjoy the time he had left. It also meant that all of us suffered high levels of anger, as his health steadily declined, and we were not aware of the likely outcome. This anger was not at medical staff, but an irresolvable anger against the disease. This manifested itself in very high levels of family tension, as the displaced anger was directed within the family. Neil, in particular, lashed out verbally at the rest of the family, causing great hurt, until I realised what was the root cause, being, as I was, in therapy for entirely unconnected reasons.
Another result of this lack of information was that every member of the family, Neil, myself, my wife, his sister and brother-in-law, was in various stages of denial throughout the last six months of Neil’s life. I still do not know at what stage Neil realised that his condition was terminal. There are signs that he had such thoughts some seven months before his death, but even two days before it, he was telling me that he would beat the cancer. I am still not sure if he was in denial or was trying to protect us.
I was probably the first to accept the inevitability of his death, as I had regular recourse to therapy groups where I could discuss my feelings openly. In family discussions, although we discussed how to help Neil seemingly endlessly, it was difficult to admit to others that he might not survive.
His death caused massive stresses within the family, many probably inevitable, but I feel strongly that if we had had more time to prepare, we might have found the events leading to his death easier to accept, and would certainly have been able to move through the grieving process with greater understanding. While it might have seemed (and perhaps in the short-term was) kind to spare us the anguish of knowing the likely outcome of his illness, in the long term it left us tortured by doubts as to whether we had done everything possible for him, and painfully aware that his last six months of life could have been much more pleasant and enriching for both him and the family.
In conclusion, as I gain more of a perspective on the events, I become more and more convinced that, although many people might not want to know the reality of such a situation, the effects on Neil, and subsequently on the whole family, could have been made much more positive with caring, expert counselling and care from an early stage in his illness.
"Our work validates Neil's life": Why Tony and Dorothy have become end of life care champions
"No, you can't speak to him, he's dead": The frustrations of bureaucracy following a 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