At home, peacefully, with family

Most terminally ill people would prefer to die at home, but few achieve their wish. Thanks to her family's dedication, Caroline Millar's mother was one of the lucky ones
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Indy Lifestyle Online

When I arrived, my brothers and sister were all around the bedside. Every now and then, one of them would reach over and moisten my mother's lips with a small sponge. I took her hand. It was very cold. She stared at me for a long time, and then whispered, "I remember". I tried to talk about our childhoods, holidays, Christmases. Mum always loved Christmas.

When I arrived, my brothers and sister were all around the bedside. Every now and then, one of them would reach over and moisten my mother's lips with a small sponge. I took her hand. It was very cold. She stared at me for a long time, and then whispered, "I remember". I tried to talk about our childhoods, holidays, Christmases. Mum always loved Christmas.

The doctor called, and talked to us about bedsores. My sister Naomi, who had been nursing my mother, looked as if she could barely take any more. We were all around the bed, our attention on the GP, when my brother Dominic stiffened and felt for Mum's pulse. Then we realised she hadn't breathed for a good minute.

The GP went to the head of the bed, saying reassuringly, "Oh, sometimes there is a good pause between breaths". We waited. Suddenly she turned to us. "Quickly, come round your mother." That was it. She was gone, leaving us weeping. The GP, too, had tears in her eyes as she said goodbye.

Minutes later we heard footsteps on the stairs. It was my seven-year-old daughter, Claire, with a toy she wanted to show Granny. I told her that Granny had died, and let her in to see her. Claire and her cousin Emma sat with her, singing songs.

Later, I, who had been so scared, found myself sitting alone with my mother, holding her hand. In the distance an ice-cream van tinkled out "Greensleeves". And I knew that I would never forget this day.

Dying at home hadn't been easy. My mother Felicity had lived on her own for 17 years, had faced both breast and stomach cancer. A hospital social worker, she had worked intensively with the dying. But it was clear to my sister Naomi that she couldn't face her own death alone. Naomi knew that her geographical and emotional closeness to Mum meant she would have to be the prime carer. "There were no facilities for looking after the dying really," Naomi said. "The day services were fine, but they were reliant upon someone always being in the house." So, in an act of near-sacrificial generosity, she took time off, and moved her family into our mother's house to look after her.

Nationally, 58 per cent of people diagnosed with a terminal illness say that they want to die at home, but only 26 per cent manage to do so. Often the strain on carers is just too much. "Sometimes I felt really shitty," Naomi says. "There were days when she was quite bad-tempered and demanding." Naomi worried about the possibility that our mother would haemorrhage to death. "I thought, if it's going to be dramatic, and Mum's told me not to call an ambulance, what am I to do? When she was coughing blood, that was quite scary. I would ask the GP regularly how she thought it would go."

Three months on and we felt an increasing sense of desperation. Mum was weakening, but nobody knew how much longer it would take. Grand National day and my brother-in-law Atam put on bets for all of us. Felicity watched the race with her grandchildren at the foot of the bed. Her horse Papillon came in first, and she lay back against her pillows and whispered, "I always thought I would make a good gambler, but I've left it a bit late, haven't I?"

The next day, Naomi rang me. Mum's breathing was erratic. My brothers were coming. I said I would get the early-morning train, maybe half-hoping it would all be over by then. When I arrived, the district nurse was saying that Mum could last another week. Naomi had booked a Marie Curie nurse for the next few nights.

We never needed those nurses - my mother died that afternoon. Just as she'd said to me, a few months earlier, "I'm going to die at home. I don't want to be shoved into a nursing home. People seem to think that if you've got cancer you must lie down and take everything, and you don't have a life other than the fact you've got cancer."

And right up until the end, my mother did have a life, friends visited constantly, she was learning about jazz, buying a pashmina by post.

Cath Bredbury, an area nurse manager for the Marie Curie Nursing Service, which provides nursing care to help patients die at home, says: "If a patient dies at home, it reduces the amount the family has to carry afterwards. They can feel proud that they've done this thing for the person who died, because it isn't easy."

But the sad truth is that if you want to die at home, you will probably need to rely on the help of a charitable organisation like the Marie Curie Nursing Service. Recent research shows that of 75 per cent of Marie Curie patients where the outcomes were known, 64 per cent died at home. But resources are limited, and patients can't always receive all the help they need. And shouldn't this care be available on the NHS? Eva Garland, the Director of Nursing for Marie Curie, says, "I am Danish by birth and my colleagues in Denmark are appalled that people are dependent on charity to provide what really is very basic care."

Macmillan Cancer Relief, another charity, can provide specialist nurses to visit patients at home and advise on symptom control. They also provide grants to help with bedding, transport, and nursing costs.

In London and Oxford, there are branches of the National Befriending Network, whose sole purpose is to provide volunteers to support the terminally ill at home. "The person who is ill often feels they have to protect their family," says David Vitler of the Network, "and with professionals they keep a bit of a distance, but a volunteer can be more open."

Hospices can support patients dying at home, with nursing, practical and emotional care. Barbara Monroe, acting chief executive of St Christoper's Hospice in London, says: "One of the great benefits of the hospice movement is that the unit of care is the patient and the people close to them." Given that support, many families do choose to have the death at home. However, Monroe adds: "Some people don't want to die at home, and the important thing is that they have informed choice, and can change their mind."

For our mother, it had to be at home, surrounded by flowers from the garden, her dog Daisy snoring beside her on the bed. Fiercely maternal, she waited to die until all her children were with her. "Planning to the end," Naomi said. And why not?

The Befriending Network: 020-76892443; Hospice Information: 020-8778 9252; Macmillan Cancer Relief 0845 6016161.

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