When I first took time out to be my dad’s carer, I thought it would be for a couple of months, a year at most. His mental health was deteriorating to the point where he couldn’t go to work – he was a cellar manager in a pub – he couldn’t do any housework, couldn’t go to the shops. He was depressed, anxious, often psychotic. He was seeing a psychiatrist, he was on medication. I thought it would be sorted out and he’d get better.
At the time, I was the person most free to help him. My dad lives alone – my mum and dad separated years ago. My siblings had husbands, wives, kids, responsibilities. I was in my mid-20s, and at first, I tried to juggle his care with flexible jobs – in a Sports Direct, a bowling alley, a school, a florist, a bar. At one point I was working three jobs. I’m not an idiot, I’m not lazy, but it was impossible. I took jobs where they want you to be “flexible”, but it doesn’t work both ways. I’d arrange all my dad’s appointments around my rota, then my boss would change the rota with 24 hours’ notice. I stopped work so I could go to my dad’s every day, get him to his appointments, get his shopping done, get his benefits sorted, make sure he had his meds, gave him emotional support and encouragement, but his health issues still snowballed.
He developed the lung condition chronic obstructive pulmonary disease (COPD) and the circulation disorder peripheral vascular disease (PVD), and came close to having his leg amputated. He needed a stent in his leg, then an artery bypass. Explaining all this in a Department for Work and Pensions assessment is not simple, but I do know that if he hadn’t had a carer for the last 10 years, he’d be dead.
After my rent is deducted, my universal credit and carer’s allowance works out at about £80 a week. Honestly, I get by fine. I don’t drink an awful lot or go out partying. I’m happy to eat beans on toast, baked potatoes and instant noodles. I’ve always been frugal because I’ve always been poor. I grew up with five siblings in one bedroom, there was no such thing as leftovers. I’ve rented a room in a house for 10 years now. I don’t drive. I never buy new clothes. My phone is on the way out so today I bought a new one from eBay for £46. I’ve got £245 in my bank account. That’s all I have.
Some people will think, “How can you live like that?” Most people would want a proper career by now or a family or holidays and nice clothes. I’m quite happy without those things. I’ve gone from being a kid to being an older kid. I guess that’s what poverty can do. It keeps you in a state of arrested development. I can’t afford to “go to uni” or learn to drive. I’ve only ever lived day to day.
I have noticed the cost of living rising. My household bills are included in my rent, although I worry that my landlord will have to put it up as his energy bills have doubled. My dad pays his energy bills separately so I’m worried about that. His landlord is putting his rent up even though there’s no central heating and it has rats. I’m trying to get him moved.
My endless worry is that my dad will be declared “fit for work” and lose all his benefits, and I’d lose mine too. It’s already happened once. The DWP sent someone round to assess him. She was going through her questions, “Can you get yourself dressed in the morning?” “Can you do up buttons?” while Dad was sitting in the corner in a beanie, so frail, so gaunt, asking who this person was and what they were talking about.
She judged him fit for work, our benefits were stopped, he wasn’t entitled to his free meds. It took a year for the appeal to come round, and I’ve blanked most of it, it was so traumatic. I remember it in flashes – crying down the phone, sitting in Citizens Advice, meeting my MP to ask what work my dad could possibly do, going to the food bank. When the appeal date came round, it took me an hour to get Dad to the magistrates court, even though it would be an eight-minute walk for you or me. The magistrate took one look at him and said, “Obviously he can’t work.” Our appeal was upheld, our benefits reinstated, but I live in fear of it happening again.
As told to Anna Moore. Siobhan is in her 30s and lives in the Midlands. Names have been changed
The Trussell Trust is an anti-poverty charity that campaigns to end the need for food banks. Show your support at: www.trusselltrust.org/guardian
