I couldn't love Dad more - but now I wish I'd let him die

When her adored father was struck down by a brain disease, Niki agreed to him being kept alive by a feeding tube. So why does she now think it’s the cruellest thing she’s ever done? One of my favourite memories of my father is of him tall and strikingly handsome in a grey morning suit, his arm linked into mine, on my sister’s wedding day. He looks strong, vigorous and is beaming with fatherly pride. Now, as I write this, Dad sits in a care home in Yorkshire, his eyes clamped shut, his chin slumped on to his chest, unable to eat, drink or move. He cannot talk. All that remains is his hearing and a tenuous sense of who I am. He is 63 — yet he’s a mere shell of the sporty, gregarious man he used to be. All I want for my dad Colin now is for death to release him from the prison of his suffering. But his life — against my will — is being artificially prolonged. For a year, since Dad lost the capacity to chew and swallow, he has been kept alive by a tube that feeds him — known as a PEG tube — and the law prevents us from removing it. So Dad is not be permitted to slip seamlessly from this half-life into perpetual sleep. Instead, a crueller death awaits him: he will be sustained by nutrients pumped into him until he chokes on his own saliva or dies of pneumonia. Dad has a rare, untreatable brain disease called Progressive Supranuclear Palsy (PSP). For the past six years it has progressively stripped him of his humanity. First he lost his strength and co-ordination; then his mental acuity deserted him. He became doubly incontinent, he has difficulty opening his eyes, and the last words he said to me — 14 months ago — were a whispered: ‘I love you’. As the capacity to eat and drink began to desert him, my brother Ben, 25, and I — his next-of-kin — were encouraged by the management of his care home to have a PEG fitted. My instinct was to resist — years earlier Dad had said to me: ‘If ever I’m ill, please push me over a cliff’ — but he was wasting away. At 6ft 1in tall, he weighed just  10 stone — and it was awful to see him so visibly diminished and frail. So although his level of understanding was questionable and he could not speak, I asked him if he wanted to be fed through a tube. His response was to raise his thumb. So Ben and I agreed: the PEG should be fitted. When we made the decision, we did not know it would be irrevocable. We were not told the law would prevent us from reversing it, even if Dad’s pain became untenable. It is a profound regret that I did not research the legal implications of our decision. He and my mum, Anne, were a glamorous, affluent, outgoing couple, and although they divorced when I was 21, Mum still visits him. Dad was 24 when I was born, and was a wonderful, devoted father. It was he who came to my bedside to soothe me when I had nightmares as a child. I remember him stroking my hair and staying with me until I fell asleep again. He was a successful businessman and was managing director of a succession of prosperous businesses. Our home, in a pretty Derbyshire village, was a converted stable block. Dad was always well-groomed and immaculately dressed and loved to zip around country lanes in his Jaguar. Sport was his passion and his favourite afternoons were whiled away at the village cricket club. Fitness was almost an obsession: he played his beloved cricket, and squash, until his mid-50s when the first signs of his illness appeared. It is now eight years since I noticed the first, insidious signs of the disease. I was then an editor on a men’s magazine and had a two-seater sports car to review. As Dad had always owned powerful cars I drove up to see him; I knew he’d love to take a spin. But it was a shock to see him struggle in and out of the car. He must have noticed my concern because he laughed, blaming his stiffness on a vigorous game of squash. The disease continued on its remorseless course. In New Year 2004, when Dad and I went to New Zealand to visit my sister Rachel and her children, its effects were too obvious to ignore. He would ask me to do up the buttons on his polo shirt; he could no longer tie his own shoelaces. Back in England, I urged him to visit his GP. He was diagnosed, at first, with Parkinson’s disease — he was just 55 — but when his condition deteriorated rapidly, a second opinion revealed that he had PSP. His sharp physical decline was accompanied by a loss of co-ordination; his perception became dulled, his faculties less acute. Having recently split up with his long-term partner — Ben’s mum —Dad had bought a cottage in a remote village outside Doncaster. A proud man to the last, he resisted our pleas to stop driving. But when he wrote off his new 4x4 — thankfully harming no one but himself — to our huge relief he surrendered his driving licence. And the drugs he was taking for his symptoms had an unwelcome side-effect. 'I believe his carers are acting not out of mercy or compassion but from fear. They are terrified they will face prosecution if they remove the PEG prolonging Dad's life' He became uncharacteristically reckless with his finances. Dad, a successful businessman, was suddenly vulnerable; easy prey to the unscrupulous. In the end, his cottage was repossessed. By then on state benefits, Dad spent some time in sheltered accommodation for those with progressive illnesses. But, free to come and go as he pleased, and increasingly delusional, he often put himself in harm’s way. Once police found him at 4am walking on the still-busy A1. Another time he went missing for 24 hours. A mountain rescue team, police helicopters and diving squads were deployed. After a cold night passed, we expected the worst. He was found asleep on a bench in a nearby garden. In many ways it was a relief when his mobility deteriorated and he was moved to the private nursing home where he now lives. I know I am not alone in having a loved one depleted by a pitiless disease, but I hope my father’s case may serve as a warning to others who face the same dilemma as my brother and I when asked if we wanted to extend Dad’s life. At first, the PEG tube did what everyone hoped — Dad regained weight and a little strength. But as the months went by, his disease cruelly cantered on. Last December, he was hit by a series of awful infections. One morning his home called to say he had pulled his PEG out; Ben and I read that as a manifestation of his frustration — especially as the PSP association told me many sufferers do the same. They are, literally, sick of living. Dad just wanted to die. But he was hauled in and out of hospital; his PEG replaced and his empty life again prolonged. When, last Boxing Day, I visited him, he had such a raking cough I thought he would choke to death. Ben and I decided enough was enough. It was time to remove the PEG and let him go peacefully. So, one Friday in January, Ben sat in a meeting at Dad’s home with the home’s deputy manager, Dad’s GP and the community matron and told everyone our wishes. Dad’s GP agreed. She said the PEG was keeping him alive unnecessarily. That weekend passed in a daze. I sat with Mum, contemplating a world without Dad. I knew we had made the right decision — but still I found myself mourning. On Monday I spoke to his GP, who assured me she would ensure he was comfortable. He was already on morphine and his dose would be upped so he would be peaceful as he slipped into unconsciousness. 'When I think of the many indignities Dad's illness has inflicted on him, I hope — really hope — he will not wait long for death' Then came the volte-face. Another meeting was called, which I attended. The manageress, absent last time, was present. It seems she, the community matron and the care staff had convinced his GP to change her mind. Dad’s life, it seemed, was now worth preserving. His PEG, I was told, would not be removed because Dad had quality of life and a reason to keep on living. The truth is, I believe his carers and his GP were acting not out of mercy or compassion but from fear. They are terrified they will face prosecution if they remove the PEG prolonging Dad’s life. His doctor told me it would be morally wrong — and illegal — to take it out. His carers said that because Dad is no longer able to communicate his wishes clearly, it could be construed as assisting his death if it were removed. Without the support of Dad’s GP, Ben and I are powerless to do the right thing by our father. Dad, by now almost in a permanent vegetative state, is kept alive by a feeding tube. The anger and impotent frustration I feel would make him really sad (if he knew). And what of his carers’ claim that Dad has a quality of life worth preserving? Every time family — or his friends — has visited him over the past eight months, Dad seems to be asleep. His eyes are shut. Sometimes he has weakly squeezed my hand or raised his thumb at half mast in response to a question. The only evidence he is alive comes with the hideous coughing fits that threaten to choke him. Yet his carers have told us they have seen him smile, wave even. As he doesn’t do any of this for us, we were sceptical. For years Dad has worn the ‘expressionless mask’ common in PSP sufferers. Disturbed and upset, I told the home I found the claims hard to believe. So they offered to video these moments for me. Four months on, I have yet to see any footage. However, I must say that he is tended with love and kindness at his care home; we have no complaints on that score. Now, at least once a month, I make the 350-mile round trip from my home in London to Dad’s bedside. I am sad my two-and-a-half-year-old son Burt will never know the fun-loving, sporty man his grandad once was. And when I think of the many indignities Dad’s illness has inflicted on him, I hope — really hope — he will not wait long for death. Today, he will be sitting in his bed or chair, oblivious to this article, the weather or date. His weight and body mass index are near perfect thanks to the carefully prescribed formula pumped into his stomach. To what end? The PEG has worked so effectively it has become Dad’s life-support machine. But the quality of life it is supporting has diminished so much that, surely, it is now time to take it out and let nature take its course.