Susan Sutcliffe was invited to present a Befriending Network Salon in London in June 1999 on the theme of 'Dying at Home'.
He died gently, like a leaf falling from a tree - yet it was not the autumn of his life, but the springtime. David was my son. He was 27 years old. He died at home in his own bed, surrounded by his dearly loved and loving family; the cat was on top of the wardrobe, the dog lay under the bed. The room was quiet, we had said our goodbyes. We held him gently - all our hands on him, listening to his intermittent breathing. Till the last breath was breathed out and he was no longer with us.
This is probably the way that most of us would like to die if it is possible, yet it was a long road which led me to have the confidence that I could manage it myself - to nurse my beloved son in the home that he loved ... right to the end.
There have been many goodbyes in my life, from the age of five when I was sent away to boarding school - many different boarding schools in different countries, Australia, South Africa, returning to the UK in 1944. A turbulent life disrupted by the war, evacuation from Singapore, my father a prisoner in Japanese hands.
Everywhere, friends and loved animals were left behind. My first baby died, also a beloved friend with cancer at the age of 50. He died alone in hospital - I watched helpless and heartbroken. Eighteen months later my son was diagnosed with a terminal brain tumour. He was 23 and was given six to nine months to live. I knew there must be another way.
Some years before, my husband had been a senior officer in the Army Air Corps and we had several casualties from flying accidents. I had to help with the families. It is hard and frightening to deal with death and to be confronted with a subject about which we talk little. Yet when it is there and a reality you have to face it. These instances helped me to start thinking about death and dying and led me to read Dr. Elizabeth Kübler-Ross' books on the subject. I went on her workshops and training courses and she became a good friend as she lived near my son in Virginia. Her teaching and philosophy helped me so much when the reality of dying and death came to my doorstep.
David lived for four and a half years after diagnosis. He was one of the first patients at the Cancer Help Centre in Bristol. He learned there that there were things he could do to change his life and help himself. He said several times that these were the best years of his life. We learned to deal with fear, we changed our diet, we learned to release stress, to meditate, to communicate, to have positive attitudes to what was a very frightening situation. We learned to use complementary therapies that helped in different ways. It was a hugely learning process - in the days before these attitudes and therapies were acknowledged at all.
David did not win the battle on a physical level, but in emotional and spiritual ways he was supremely victorious.
In the last six months he became more and more physically handicapped. His tumour was on the brain stem and affected his motor functions - but luckily, so luckily, not his thinking or reasoning processes. These were clear to the end. In the last few months he was in a wheelchair, he couldn't walk well, speak well, see well, hear well or swallow well. We devised a pulley system to haul his wheelchair upstairs so that he always could sleep in his own room. He used a typewriter to communicate, and then we made a 'speaking board' with many statements on it so that he could point out his needs.
In the last two months he had to be fed by nasal gastric tube. This was hard because he liked his food - but it had to be done. The last time I took him to church we stood in the churchyard bathed in autumn sunshine. He looked around at the lovely countryside, at the hill nearby which we had climbed many times and then, turning to me, he said, "Mama, soon I will be coming to live here forever". I could only say, "Darling, it is a beautiful place". My heart was weeping.
Christmas came. The whole family joined us and we had a happy, close and loving time - never to be forgotten. On New Years Eve - it was a cold and frosty night and at midnight the bells of the church where David would be buried rang out. We wheeled him out into the field from where he could see the church floodlit across the valley. He was silent for a few minutes, breathing in the cold air and the scene that lay before us, church bells ringing and suddenly he lifted his hands in the air, joy across his face and said "Welcome, wonderful New Year". Sixteen days later he died.
Two nights before he died, I was putting him to bed and we always prayed and talked together for a while. Again he turned to me, holding my hand, his eyes alight. "Oh Mama" he said, "I am so lucky, so incredibly lucky. I would have died years ago if it hadn't been for the love and care you have given me, and the help I've had from all my friends. When I think of all the people dying alone in hospital and I am here in the home I love and with the family I love, I am so very lucky". He meant every word, and those words have been engraved on my heart ever since. He was saying "I am all right".
The next day his elder brother arrived back from a business trip. He was wearing a new tie and they had always sparred over new ties! David reached across the bed, pulled on the new tie and stuck his thumb up in approval. His sense of humour never left him. His voice had gone again - having returned for a few days before this. (This is a phenomenon Dr Kübler-Ross had said often happens - that just before death there seems to be an improvement.) That night he fell into a coma. The rest of the family drove through the night to be with him. He died with us around him.
We were all holding him - our hands touching his body, his feet, his face, his head and his hands. We held him, listening to his intermittent breathing - waiting for that last breathing out. It came very gently; he breathed out and then there was silence - tears were on every face. Our beloved David was gone - but he died surrounded by those he loved most - touched only by our loving hands and the love in our hearts - he died well.
When the doctor came I asked to keep him at home. The weather was cold with snow on the ground. My daughter is a nurse - we dressed him in his favourite pyjamas and he lay in his bed. The room was filled with flowers and candles, kept lit day and night. His friends and family could go up and talk to him, pray and weep. There was a sense of great peace in that bedroom. Goodbyes were completed, unfinished business done. When the day came for his burial, no one else had touched him but those who loved him. His brothers and cousin carried him into the church. Tears pouring down their faces. The service was built around participation of those that loved him - family and friends. His brothers carried him to his grave and lowered him gently down.
Tears were on every face and pain and loss in every heart - yet there was a deep quality of love and dignity - a sense of sharing in that loss, that was one of the most important and moving moments of David's life. I felt we never let go of David's hand, nor he of ours. I am proud of that.
One year later I sat with my father as he died in his own bed at home - four months later I was beside my mother as she died, also at home - and two years ago my beloved partner died here in this house where I now live - gently, at dawn, as the sun was rising over the distant hills, the dogs lying by the bed and where my son and I had kept vigil all night. Peace was in that room.
Death is heartbreaking and it takes time to grieve and for the pain to begin to heal. Yet I have a sense of peace and even perhaps a fragment of joy that I was there and holding the hands of my beloved people at the moment of their dying. Loving and joy are, after all, one side of the coin of life - loss and pain the other.
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