The long goodbye

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Indy Lifestyle Online
As the debate continues about whether people should be able to choose how and when they die, Stevie Day explains how difficult it was to honour her father's wish to spend his final days at home. Would he have put himself and his family through the experience if he had known what it would really be like?

MY FATHER banged his stick and said that he had had enough of hospitals: the last time he had come out, he had not felt any better than when he went in. At 82, and having had inoperable cancer for almost 18 months, he never quite believed he was going to die of the illness and tackled the whole business with grim resolve. Staff treated him like an old friend on the ward where he was a frequent patient, but once treatment had enabled him to swallow food again, he was always impatient to get home, where he could be in control of his own life.

He was an engineer who had always been in control and he was fiercely independent. But dying is unpredictable. No one can tell you how you should do it. When the GP told us the illness had reached its last stage and that death would be "rapid", we had no hesitation in saying he wanted to die at home. The promise had been made: no more hospitals. We had been getting support from the district nursing service and latterly from social services; he had been going weekly for a day at the hospice. We had contact with Macmillan and Marie Curie nurses, and twice daily care from a visiting team could start straightaway. Pain would be controlled and he would not be allowed to suffer.

But we did not know how unbearable it would be to watch his decline over the next 18 days so intimately. It is harrowing to visit a very sick patient in hospital day after day but you do not physically handle them. You do not dress their bony shoulders or lift them onto the commode or move limbs that are so wasted they are now obscene. Your heart aches. It is not helpful to reason that he was lucky to live to 82, that war and disaster bring more terrible deaths, that babies die, that everyone dies of something. This is your father and he is dying.

And he does not want to die. He does not know how to die. He asks repeatedly. "What should I be doing now?" Why aren't they insisting he eat? Could he eat if he wanted to? Of course, we say: let me bring you some soup, would you like some porridge? Could he get up if he wanted to? Your legs are very weak, we say gently; they don't hold you up very well now. He fights to keep a grip on reality: he constantly wants to know the time, the date, whether it's day or night. He's not in hospital and therefore he isn't ill, so what's happening to him? He struggles in fury to make everything make sense. He asks more and more bizarre questions and demands clarification. He dozes and wakes but he is never relaxed.

The days pass. A whirlwind of nurses: the morning team with bowls of water, the evening team with torches and mobile phones, the night nurses who give us a break so that we can sometimes snatch a sleep at home. Wild geese fly over as we drive back one early morning: the mist hangs low over frosty fields and we realise the season has changed. We give each other breaks, but when we are out of the house we cannot let go. They introduce morphine and for one wonderful moment as it takes effect; he lies rumpled and rakish looking like a schoolboy and he looks content. We earnestly want him to die in peace. As the mental confusion becomes more distressing, we want him to slip away in his sleep.

But things become nightmarish. He suffers ischaemic attacks; he writhes and crumples to the floor; we have to get a paramedic to help. The situation is now beyond our medical skills and who we are has been irrelevant to him for some time. We have to call the ambulance and as we wait for it to arrive we pray that he will die before it gets here. On the stretcher, he lies as still as a corpse, but he puts up two thumbs when the ambulance man says, "We're going to move you now, Stanley."

He does not die in the ambulance. When he reaches hospital, his favourite nurse, Shirley, says, "Hello again, Stan," and gives him a kiss. He smiles. We wish he could die there and then, but it is another profoundly distressing 40 hours before he does. It is the war zone of Bonfire Night with the sky exploding around us and they are infinitely patient, these overstretched NHS nurses. They put him in a quiet, private room and bring us endless cups of tea as we watch him struggle until the morphine finally takes over and he dies.

I ask myself: did we do the right thing? On the ward or in the continuing care unit, might he perhaps have felt more secure, with hospital routine and with skilled nursing 24 hours a day? Would he then have accepted his death; did being at home encourage him to think this might be just another setback? And if, a proud and private man, he had been aware of what was happening to him, would he not have hated the thought of the initimate and undignified things we had to do for him? We loved him and were faithful to what he wanted, but being at home does not guarantee a peaceful deathbed.

In lighter moments, we have told our children that if we reach 80 years old we will take up a dangerous sport. And yet, accompanying someone to the door of death is a life experience, a rite of passage which brings a new wisdom and a new maturity. I think they will have to make up their own minds what they do for us. What we mustn't do is hold them to any kind of promise.

The author's name has been changed

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