When Someone Dies

Prof Ronald Philip Draper
Prof Ronald Philip Draper

WARNING This post contains honest details of someone dying at home from cancer.

My elderly father died in September from advanced bladder cancer, after I had moved in with my parents to care for them both in his last months. I found preparing myself for his death hard, not least because I just didn't know what to expect. Knowledge is how I cope with things, so I am sharing this story in the hope that it will help others in the same situation. Please do not read further if this could upset you.

He was very neat. Head on the pillow, arms by his side. The skin so thin and taut against my father's cheeks, sallow, pinched, a shadow of the man I'd known before his cancer spread. He lay in his hospital bed, carefully positioned next to my mother's, in the bedroom of their bungalow, the utilitarian foam mattress enlivened by the yellow and grey Sherpa blanket I'd bought for him in his last weeks. It was tucked carefully around him, right up to his chin.

I almost missed the moment he died. I'd been pottering all day, finding jobs to distract me as the hospice carers came and went. 8.45am, 12 noon, 4.05pm, 9pm, the last shift before the Marie Curie nurse would come to sit with him for the night. She was due at 10pm.

9.45pm, I stopped my pottering and checked again on Dad. He was peaceful, the syringe driver whirring quietly at his side, feeding the painkillers that were helping him sleep. His breath seemed lighter, shallower, more at ease, the pain he'd had banished by the new drugs. His chest rose and fell and I was reassured. They'd said he wouldn't go yet, that the first signs might be a series of long gaps in his breathing, hours or days before he'd go. But, I thought, how will I know? He was breathing rhythmically. In and out. In and out. No gaps. Peaceful. Stable.

I sat down, picked up his hand; my mother was sleeping too, at his side, curled over to face the window, snoring once in a while. I had 15 minutes before the nurse arrived. I'd sit with him, be with him, savour the moment before another visitor inhabited the house. His hand was warm, the veins under his skin, blue and slightly bulging. I thought I felt him squeeze my fingers a little and squeezed him back, comforted. Had he really squeezed my hand? I wasn't sure, but I held on, resting my other hand over his, talking softly. I don't remember what I said. Something about being there, the meal I'd just cooked, the garden. The blinds were open, the shapes of the trees and hedges dark against the night. A bird swept across the sky, disappearing into the canopy. It was September, still warm, the foliage fading from the lush green and reds of summer to shades of purple, yellow and pink. Dad loved his garden. There were pots crammed by the back door, and a bird feeder swinging from the pole I'd placed with hanging baskets by the bedroom window.

He took a breath. Paused. I held mine too – he'd not done that before. I heard the crunch of gravel on the driveway as a car ground to a halt. The nurse? He gave a short indrawn sigh and I let my breath go. The syringe driver clicked through another cycle.

'Mum?' Suddenly, my heart skipped a beat and I was galvanised into action. I reached over, shook her arm. She mumbled as I grabbed her hand and placed it over Dad's. 'Hold him,' I said, folding her fingers over his. 'Now, Mum. No, don't let go.' I held her hand in place, as he took another pause in his breath.

The doorbell went. There was a moment when I dithered. The bell telling me to run to the front door, to let her in, instinct telling me to stay put. I ran anyway, tears on my face and ran back, ignoring her as I picked up my Dad's and my Mum's hands again and felt his pulse. It was warm and solid, beating reassuringly against my thumb. Strong. There. Waiting? I watched his face. He took another breath and paused again.

I felt the nurse moving into position behind me, reaching to take his hand. She felt his pulse too. 'No,' I said, 'please…' She let go. Stepped back. He took another breath, then paused again. There was a sigh. A vague movement of his hand. His jaw was loose, his eyes open – they'd been open for some time – and for a few seconds I sat there. But he didn't breathe again.

My mum was awake now, confused. Her own illness protecting her from understanding what had just happened. The nurse took his wrist, checked for a pulse, and confirmed what I already knew. He'd gone.

It was almost a non-event. There one minute, gone the next. So simple. His body an empty husk. It took a while to take it in. I cried. One sob followed by another, and then I couldn't cry. Not yet. I just sat there, waiting. For him to breathe again.

Eventually the nurse spoke. We had to call 111, to get a doctor to confirm the death. It was going to be a few hours, they said and the nurse went. No point in keeping her up all night, I thought. I made a few calls, then sat with him and Mum. I tried to explain. She looked bemused, stared at him. 'Do you want to move to the other room?' I asked. She shook her head. No tears. It was several weeks before she could cry. After a while, she rolled over and went back to sleep.

It was 4am before the doctor came. He didn't meet my eyes. I showed him into the bedroom and he fumbled in a bag for a crumpled piece of paper, then bent down to check Dad. It only took a few seconds. He left straight afterwards, with not a word of sympathy. Too tired, I realised. Or just seen it, done it, too many times before, on to the next one before dawn. Overworked, underpaid. Bloody NHS. No, government. Now I had to ring the funeral directors. They came much more quickly. 5am. Two young men in full blown, black three-piece suits which seemed odd in my parents' house, in the middle of the night. And a plain white van, with a stretcher and a white plastic body bag. I had an embarrassing urge to laugh. They were very polite, very sympathetic, very young. 'Do you want to sit with him?' One asked. We'd sat with him for 7 hours, but still I didn't want to let him go. Not yet. 'No,' I said. 'It's okay.' I went over to give him one last kiss. His body was already cold and stiff. I felt a small flurry of shock, then panic. His head was tipped back. His jaw open. I tried to close his eyes. His cheekbones were so pronounced. He'd not eaten or drunk at all those last few days. I remember the sweet smell of him. I'd expected a release of bodily fluids but there was none. Nothing left in his system to release. They put the stretcher on the carpet, busied themselves with the body bag, then paused, looking at me again. 'It's okay,' I said. Again. And this time I meant it.

They carried him out, looking almost apologetic. Like two men carrying an old sofa from the house. I heard the van doors slam, peeking out of the window. My mum stirred but I stayed at the window, making myself watch as the van crunched over the drive and the tail lights illuminated the shrubbery a lurid shade of red. Dawn was starting to break and a mist swirled across the gravel, moisture gleaming on the stones.

There are plenty of websites that tell you the basics of what to expect, but nothing really prepares you. Reduced eating. No drinking. Pain, or not, depending on the cause of death. His organs had failed one by one, like dominoes, the lungs and heart last to go. Plumbing. Wiring. That's what the body is. Dad was lucky – we had one night a few days before when the pain kicked in. I'd had to call an ambulance to get the right medicines injected into him, and then it was back under control. The Hospice nurse rang the next morning to tell me to say goodbye to him now, before the syringe driver went in. He'd called out, those last few days, arms and fingers waving in the air as if to catch flies or reaching for something none of us could see. Then the dosage was increased and the drugs did their job and he was much more peaceful.

The hospice staff were so lovely, and knew exactly what they were doing. Four times a day, in pairs, moving around the bed, washing and repositioning him and offering me cups of tea even though I don't drink the stuff. Two district nurses came each day, checking the driver, topping up the drugs, changing the batteries, kneeling on the bedroom floor like two small children, the best of friends, checking and rechecking the meds. Everyone was kind. After weeks and months of contact mostly over the phone, suddenly the NHS system pulled out all the stops and I had all the help I could ask for. Though I did feel they were pussyfooting a little – protecting me from the realities of dying.

I kept asking when – how long? Will he suffer? The responses were soothing but not very detailed. So I googled instead. There was all that stuff about breathing, agitation, the so-called "death rattle". I wanted to feed him, to get him to drink, to keep him alive, but they were right when they said that would be counter-productive. He was going, and all that would just have made things worse. We had regular debates, the hospice carers and I, each time they came over those last two days – is that a rattle in his throat? No, they said. Maybe. No. Not yet. Maybe the next 48 hours, one of them said, in a quiet aside, at 9pm that last day, an hour before he actually went.

It's not a race. Or a fixed timetable. He went when he was ready. It just happened a little sooner then any of us expected. Or were they being tactful again? Sometimes, people wait until their loved ones are there, sitting down, a quiet moment when they've got your full attention, or the strangers have gone. And that's how it was – in the end. When the house was just my Mum and I, and him. That's how I'd like to go when it's my turn. Though whether that was a conscious decision by Dad I'll never know. But I do know it happened as he wanted it to be. At home, in his own space, with his wife of 73 years at his side, his daughter too. Holding hands. Just as he'd described in his Advanced Care Plan.

He was 94, almost 95. I'd be happy to go at that age. He had a good life, luckier than some, but with sadness too. But most of all, he was loved.

Ronald Philip Draper, 3/10/1928 – 14/9/2023