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OPINION

'When can I go home?' Why it's important to talk about dying

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Tony Bonser’s son died of cancer, he wishes that he could have talked more about dying with a nurse …

This week is the second annual Dying Matters Awareness Week, with events and activities across the country aimed at making discussions around dying, death and bereavement easier. Sadly, I know from personal experience how important this is.

When our son, Neil, was diagnosed with cancer in 2004, we all went into shock. He died in March 2009, but the shock remains. He was 35 years old, and that just doesn’t happen to anyone of that age. It most certainly doesn’t happen to your son. What happened in those five years, and since, is, very simply, why Dorothy, my wife and I now campaign for better end-of-life care. We still feel immense anger and guilt. How could we have let it happen? Surely there was something more we could have done. I don’t think there was, but it still haunts us every day.

It’s not easy talking to a 30-year-old about death, particularly when you are all, me, Dorothy, our daughter Sam and her husband Rich, and most of all Neil, in denial. I think you need a degree of denial, you need to keep alive the hope, but that doesn’t alter reality. He died, and we still feel there was so much more we could have done.

Some things stick in the mind – we talked about what he wanted to do, right from the start, and then made it happen. Trips to Greenwich Village in New York, and Malta, while he was still able. Trips to gigs, and to see friends. Later, I remember the evening chats Neil and I had in the month or so before his death, when we talked about anything he wanted to – football, books, music, and so very often, spiritual things. He wasn’t religious in the accepted sense, but he was very spiritual, and we discussed heaven and hell, the after-life and the supernatural. Preparation for death? I think so now. We didn’t talk about death openly, but I think that really, we did. Every night ended the same way. He was being looked after at our house. “When can I go home?” He was independent – very – and loved his own flat.

I guess it’s different when you’re young, and death is a million miles away, and something that only happens to very old people, but there are ways of speaking the unspoken.

Some things went right, and they are so important to us now. When he was in hospital, having chemotherapy, he was put in a ward with others of his own age, having the same treatment. He called it, “the cancer camaraderie.” It helped all of them to cope. He was treated as a person, not a disease, and that mattered so much.

In the last week and a half, he was in hospital. He loathed hospital with a hatred almost amounting to phobia. The day before he died, at a meeting of the family with the consultant and nurses, a nurse asked what he wanted. He was adamant, “just to go home.” The ward sister put him in a side ward, waived the visiting regulations, and told him he could have a party. He did, and all his friends came that evening. There was beer, cakes and nibbles, and a lot of farewells, though no one would admit it. A Macmillan nurse arranged for him to go back to his flat the following day, with full 24 hour support, oxygen, wheelchair and  ommode. When Neil arrived at 2 o’clock the following day, he sighed with contentment, relaxed and enjoyed being where he wanted, surrounded by his books, CDs and his family. He died, peacefully, at 8pm.

You don’t have to use the work “dying” to help prepare someone. Sometimes it’s enough to ask what they want, and to make it happen, to be there for them. It happened for Neil, and that makes life a little easier for us.

Dorothy and I have wondered over the past two years why it was so difficult to talk to Neil or each other about death. Perhaps he was too young, and we were too close. Sometimes it takes someone outside the family, someone who cares. We wish we’d all been able to talk about it to a nurse. In some circumstances, a nurse is just the right person, in just the right place, at just the right time.

For more information about Dying Matters Awareness Week go to www.dyingmatters.org

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Readers' comments (2)

  • Thanks for sharing your story. Talking about dying really is important.

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  • a wonderful story, it sounds like the opportunities were there to use the "d" word, but maybe it was not needed, actions can speak far louder than words and it does concern me that it is often thought that the "cancer" or "dying" words have to be used to ensure a person understands and can deal with their situation. For some that word may be just to much and the effort to keep living be extinguished, it is not a bad thing to live for each day, in fact would help us all to do that a lot more.
    This story is such a positive story about how to "live" for each day,thank you.

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