New books for carers

Aneurin Wright, 38, looked after his terminally ill father for the last six months of his life. He has written and drawn a graphic novel about his experiences, Things To Do In A Retirement Home Trailer Park When You’re 29 And Unemployed.

My dad, Neil, had been a smoker for 50 years. He’d started taking oxygen in 1996 but the gravity of his emphysema didn’t dawn on me. In 1999, he had the most diseased parts of his lungs removed. In 2002, aged 67, he was told he had six months to live.

I had been laid off from my job as an animator. I said I’d move to California and take care of him, not knowing what I’d let myself in for. I stayed with him until he passed away in May 2003. I didn’t realise how hard it was going to be.

He had two sides to him. He was a successful architect with clients who adored him. He built some of the most celebrated houses in my home town and had a street named after him when he passed away. But on a personal level, he was always working so wasn’t around. He and my mother divorced when I was eight. He decided he didn’t want to force visits on his children – he thought if we wanted to see him we’d ask but he never invited us, which we thought meant he didn’t want to see us. He was very remote. Moving in with him was interesting because he was still a remote figure. Living with him for his last six months changed how we interacted with each other.

A typical day would mean I’d get up at 5.30am. Sleeping for him was difficult. He’d sleep on a reclining sofa because lying down made him feel he was suffocating. I’d count out his pills – 20 each morning and evening. I’d make him breakfast and 12 to 15 times a day, he’d have breathing treatments. He’d use a nebuliser and take pills and each time I’d have to sterilise the apparatus. In between he’d read or watch daytime TV. I started drawing little comic book vignettes about what was happening to us. Then I’d do lunch, buy groceries, do dinner, more pills, then put him to bed. The nurse visited twice a week, a carer helped bathe him three times a week and the doctor came once a fortnight.

A month before he died, my sister said: ‘I wonder how long this is going to go on?’ Then she realised what she’d said. It’s bizarre. You’re sitting around waiting for something to happen but you don’t want it to happen. The interminable circumstances send you a bit mad. Waiting was the hardest part.

He’d defined himself by his work. He no longer had the energy to work, so had to turn his focus to other things. He’d always loved me but didn’t understand my interests. He got a little freaked out when I told him I was drawing a comic about us but one day he shuffled over to my desk, saw I’d drawn him as a rhinoceros-headed character and was delighted. He kept asking to see the next page.

Because he had to put his work aside, it meant he focused more on our relationship. There’s nothing worse than dealing with the death of a loved one but the blessing was we knew what was coming. If someone dies in an accident, you don’t have the chance to have those conversations.

It was a watershed experience in my life. Things I was worried about before became irrelevant and it made me think about who I wanted to be and how I treat people. Of course, I’d rather still have my dad here.

Things To Do In A Retirement Home Trailer Park (Myriad Editions) is out now.