How it is to lose a parent in your early twenties

I was 22 when my father passed away in January 2016.

This was something I had thought I would not have to face for perhaps another 30 years. I was woefully unprepared.

‘Passed away’ is not quite the correct phrase. ‘Cruelly snatched’ would be more apt.

Dad became ill in the last week of November 2015. He was taken to hospital on November 28th, a Saturday. I remember it clearly. I was on my way home from work when I received the ‘don’t panic but I’ve called an ambulance’ text.

Within the week we had the diagnosis – mesothelioma, a lung cancer caused by exposure to asbestos. Incurable. Terminal.

Suddenly we were plunged into a nightmare.

Within two weeks dad went from being ostensibly fine, to dying of cancer.

He came home for 3 days during December, but had to be readmitted after a long Sunday waiting for out-of-hours doctors and shouting at the people on the 111 line who were next to useless.

Mum and Dad married in the hospital on the 21st December, with 3 nurses as witnesses, and some plastic holly from the ward’s Christmas decorations as mum’s bouquet. None of us children were there to see it – I didn’t want to, anyway. It wasn’t how it was supposed to go.

He came home again on Christmas Eve because he was desperate to spend Christmas at home, but it was no Christmas, not at all.

2 weeks and 2 days later he was dead.

2 weeks after he came home, things were unbearable. He was in pain, he was deteriorating mentally, we had the nurses out constantly…St Giles Hospice offered to take him for respite, to sort him out and get him comfortable, so he could come home again.

He died there, 2 days later. I can only describe the circumstances as horrifying. Something I wouldn’t wish on my worst enemy.

Terminal diagnoses don’t work like they do on telly, or in films. The doctor doesn’t say ‘you have a year’, or ‘you have 6 months’. Because they don’t know. They can make inferences, but it’s a black art. To start with, dad’s consultant was inferring years. There was talk of chemo in a few months, when he was stronger. Then the scans showed it was progressing faster than they’d expected. The years was revised down to months – inferred, though. The doctor was talking about popping into this and that outpatient clinic, several weeks and months away.

In the end we got just over 7 weeks from admittance to hospital to the end. 2 of those were spent relentlessly caring for dad at home.

It’s not that I minded. He was my dad. I’d have done anything. But it’s draining. Whilst he was at home he could do nothing for himself. He couldn’t get up on his own, or eat, or wash, or anything. He needed constant supervision. My mum and I became pharmacists, nurses, carers, cooks, cleaners, counsellors, and in the end, punchbags, even if they were only verbal ones. We were physical punchbags a couple of times, too.

Nobody should have to watch their parent deteriorate like that. Especially my dad. My dad had always been a total pillar of strength. He didn’t do emotion or weakness, my dad. To watch him crumble before my eyes was harder than I know how to express.

To be without him is harder.

I still live in the house I grew up with him in. And the pain is in the little things. I’d lived away from home for the last few years, and only moved back home last September, so the physical absence in the abstract sense was not too much of a blow – because I was used to going about life without him, anyway. It’s the details that sting the most.

It’s the garden, growing this year without his input. Suddenly all of it is in mine and my mum’s hands, and that’s hard. But watching the fruit and veg grow, watching the pond mature, having to do things I’ve always traditionally done with him or watched him do – that’s hard. We haven’t grown potatoes this year. I don’t think I could. That was always something we did together, ever since I was child. I have photos of us picking them together, me a child of about 5, proudly not wearing a shirt, because dad had taken his off in the heat and I wanted to be like him.

I’ll graduate again this summer. Last time I graduated, it was with dad at my side. He won’t be there, this time.

I drive his car. His bottle of lucozade and pot of chewing gum are still firmly in place. They won’t be going anywhere.

I need to buy a new computer soon. I have never bought one without his guidance and input. And the one I have currently is the one he bought for me. It feels like a betrayal, like he’s a little bit more gone, to stop using it.

I have a new job now. I haven’t told most of my colleagues about dad. When they ask, I tell them it’s just me and mum at home, and leave them to make their assumptions. Not because I want to cut him out of my life. But because they always get that look of pity, of sympathy, when they know what you’ve been through. It’s nice just to be another girl, just another person, not someone to be pitied.

You find out who your friends are, when something like this happens. Some friends immediately converged on me, whisked me out of my house, checked up on me all the time. Some turned away, not knowing how to handle it. Some tried to handle it, and failed. Maybe they think telling me that ‘everything happens for a reason’ will help. It’s kind of tough to accept there could be a reason for this when your dad is dying before your eyes.

I talk about dad, and I wonder if they think ‘oh no, here we go’. I wonder what they think when I mention him in conversation. Do they think I’m ‘okay’, now? Someone once said to mum ‘when you’re better we’ll do this’.

‘Getting better’ does not happen. You never really get over something like this. It just doesn’t happen. You only learn how to live with it, because you have to, and because time numbs the sting. It doesn’t ever go away, not really.

I elected not to be in the room for the ‘moment’. I couldn’t do it. I’d battled with what I would do ever since the diagnosis, but the moment the nurse came and told us it was it, my decision was made. I have peace with that decision. I have struggled for years with anxiety and depression and death is one of my biggest triggers. I couldn’t have been there. I don’t feel like a coward for it. I feel grateful to the nurse who held me and told me it was okay to not want to be in the room, that I was okay, that it didn’t make me a bad person. My brother-in-law came and sat with me after that, and let me snot all over his shirt. I’ll always be thankful for the way he held me and stroked my hair and murmured soothing words and let me cry.

The bit I found hardest initially was coping with mum’s grief – and I think perhaps I still find this the hardest part. My father had two children with his first wife, but I was the only child he had with my mother, and therefore it is me who has to deal with the brunt of her pain. Who had to watch her lose so much weight, watch her not sleep, watch her cry and be helpless to do anything to make it better. In a way it is like losing both parents, because the surviving one is so bereft and grief-stricken that they lose the ability to function as a parent. At the time you need them the most, they too are crumbling. That is hard. I learned to hide my grief, because my mum needed to be strong. To this day I mostly cry alone.

Mum’s pain is different from mine. She lived with him for much longer, and her love for him was different. And she is stuck on the intense trauma we went through during those last weeks, the horror of it all, the absolute, abhorrent cruelty.

It is easy to feel resentment towards my half-siblings. They have lives to get on with. They didn’t have to suffer through the horror of watching dad deteriorate before their eyes. They didn’t have to force medication into him even when he protested he didn’t want it because it would make him feel sick.

When dad died, he and mum had been married just over 2 weeks. This invalidated his will, so he died intestate. Which meant we had to go through probate. Which meant gathering all the paperwork together and putting it in order for the solicitor. Dad had been largely in charge of the paperwork, and it was in total disorder. That was a tough week. My half-siblings didn’t have to suffer through any of that. They didn’t have to leaf through thousands of pages covered in dad’s handwriting, knowing he would never again put pen to page.

They have their own crises, and they come over and tell us about their problems. Oblivious to the agony of living in this house, still, surrounded by dad’s things, by the memories. I can’t blame them for it really; they don’t know what’s it like. But there is still a room I struggle to go in. There are still parts of the house I don’t go to. Things I don’t look at.

There is a whole raft of music I can’t listen to anymore. I don’t know if I’ll ever be able to enjoy ELO again. That was our band. My dad adored ELO. It’s too painful to listen to, these days.

So much changes when you lose a parent, and I thought I would have years left to prepare myself for it. There is so much I’ll do that he’ll never see. Anyone I ever start a relationship with from now on will never know him. They will never know the person I was before I was broken in this way. There will be no one to give me away on my wedding day. My children will never know their grandfather.

It was my 23rd birthday in April. I opened my presents as my mother sobbed. I didn’t want to mark it this year, but my family did. I have my whole life ahead of me, and he will never see any of it, now. He will never ever be there when I need him, never be able to come and pick me up after a night out, never make a cup of tea just the way I like it. Never again will he tell me to shush because he was watching the telly, or shout at me for not watching something he thinks I would be interested in.

I don’t know what Christmas will be like this year. I think we will go away, to my aunt’s. Christmas will never be the same, because Christmas will forever be haunted with memories of my dad in a hospital bed in the living room, too weak to open his presents, too ill to really care.

I would never wish the suffering me and family have been through in the last few months on anyone. Not the worst person in the world. But I wish dad were still here. I really do. Just one more day. One more day of him well, and able to enjoy life. I wish that he hadn’t suffered. I wish so badly that it hadn’t gone like that for him. That it had happened to anyone else.

And I miss him. I wish he were here. It’s not fair that he’s not here. And that will never go away.

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