It was the man in the hospital bed opposite whom we have to thank for my dad’s decision to die at home. My father never spoke to him, didn’t know his name – yet when this man passed away, it was outside visiting hours and so he died alone under a harsh, neon glare with only my father there to ring for the nurses. “That’s not how it ought to be,” said my dad. One year on, his own death could not have been more different.
After weeks of complaining that an apple core had scratched his throat, my dad was diagnosed with cancer of the oesophagus. He was 64 and his wish to die at home was one of the few decisions he was able to make in the traumatic year that followed.
Just after his initial diagnosis, I remember racing to St George’s Hospital, in Tooting, south London, before the ward closed for the night. We knew he had cancer but surely there was lots that could be done? Surgery? Chemotherapy? I arrived full of determination that my dad would beat this thing. It took one glance at my parents to rid me of any notion that my father was going to survive.
“He’s riddled with it,” is how the doctor had put it to my mother. The cancer had spread to my dad’s liver and ribs and although radiotherapy could extend his life, he was given a year to live at best. Leaving him there that night was unbearable. As my mother and I squeezed ourselves into the overcrowded lift, my father stood at the closing doors waving goodbye. I remember the extraordinary effort it took to keep a smile on my face in those few seconds before he slid from view and I could let myself go amidst the embarrassed silence of strangers. My mother, brought up during the war and made of sterner stuff, kept her pain to herself.
My dad was a magical parent. A BBC Radio 4 producer and playwright, he filled our childhood with fun and ridiculous characters. My elder sister, Isobel, elder brother, Jonathan, and I were “the ponks”. There was a fairy that lived at the end of the garden called Bonfret. And then there was the myriad of personas that my father would assume, each with its own special voice: Mrs Gurney, who had funny turns, and Seamus O’ Disco who was 80 but still liked a good dance. I couldn’t believe I was losing all of this at 25. I didn’t feel grown-up enough – hadn’t had the grandchildren he would have entranced with his imaginings all over again.
And for quite a while I managed to kid myself that I wasn’t to lose him. Ironically, the fact that my dad’s cancer was so advanced meant he was spared the trauma of surgery. So just days after leaving him at the hospital, he was back home again. For several months my newly retired parents were able to visit friends and travel. But the original prognosis had been almost spot on.
One year after his diagnosis, my dad was skeletal. He barely ate. Instead of an alarm button by his bed, he would ring an old cow-bell that I’d bought as a kid on holiday in Liechtenstein. I can remember staying the night once when I was woken by the sound of this ornament. I found my dad shivering uncontrollably at the top of the stairs. I guiltily regressed to a stroppy teenager as I walked him back to bed and then grumpily made him a hot water bottle. It was only afterwards I realised I had behaved like this to shield him from my horror at finding him in this state.
Sometimes it felt intolerable to watch. I remember him refusing to eat one day and my mother getting exasperated, as you do with a fussy child. When he was finally persuaded to have a tiny amount, he promptly threw up dark brown liquid all over the table. “I don’t know what’s happening to me,” my father said desperately, as my mum cleared up the mess. “You do,” my mother gently replied. He was bleeding internally. She never pushed him to eat again.
By this time, my sister, brother and I would take it in turns to stay over whenever we could, while my mum coped day after day – all five of us bonded by my father’s wish to die in his own bed. When things got too much in those final weeks, the local hospice sent nurses to care for my dad and the cancer charity, Macmillan, provided night staff, too.
We were lucky that my dad had told us so clearly where he wanted to die. According to Macmillan, 42 per cent of Primary Care Trusts do not document where patients would like to die. If hospitals don’t ask patients this tricky question, there’s a very good chance that families won’t bring it up. So there are tens of thousands of cancer patients dying in hospital each year despite wishing to die in their own homes. And with only half of all PCTs offering 24/7 community care — and the number is likely to fall with spending cuts — where you die can depend on where you live. It turns out we had been winners in this postcode lottery.
The Macmillan night nurse woke Mum early one morning with the news that my dad was slipping in and out of consciousness. I was staying over and was woken with the strangely offhand news that “your father’s in a coma”. Mum’s eyes were glazed over. She had coped so well with everything up to this point but I realised that this was a step too far and that no one was going to arrive in time unless I made the calls to the rest of the family.
One by one they arrived to sit on my father’s bed – my brother, my aunt, and finally my sister. There was panic when she got held up in London traffic. I can remember my father waking up and calling out our names to check if we were all there. I don’t think he could see us properly but it was so important to him that no one was missing. Only his older sister, herself too frail to travel, was unable to be there.
What happened next was like a Victorian deathbed scene. My father, so self-effacing in normal life, would wake up, call our names, say how much he loved us and blow kisses, before succumbing once more to the exhaustion that was pulling him away from us. “I’m not ready to die yet,” he’d told me three weeks earlier. Now I think he was. And slowly the gaps between his conscious moments grew longer — his breathing became shallower and shallower. I remember counting between breaths. I think I got to 11 and then… silence. My mother, so in control of herself throughout his illness, began crawling round the bed and howling. Later she would say: “I couldn’t have done that in a hospital.”
“I don’t want to say goodbye — I ache to stay,” my father wrote, in letters he’d composed for each of his children, to be read after his death. But in the end, when he knew he had absolutely no other choice, that’s exactly what he did want to say. He wanted a proper farewell. And me? I can’t say it made missing him any easier but that scene at his bedside will stay with me forever.
2011-12-07 12:01 编辑：kuaileyingyu