We take things day by day with my dad. After more than 10 years as his full-time carer, I know not to get my hopes up that things will magically get better. At the end of last year, he had some polyps removed from his colon. The surgery helped him to start eating again and gain some weight, something I had been hoping for. I bought him some clothes in bigger sizes for Christmas and now they fit him, which is so good to see. He has his appetite back and can stand long enough in the kitchen to make himself something to eat. Sometimes he’ll even go out for a little walk, which can make you feel as if he is making progress.
But then I will arrive the next day and he can’t get out of bed. He tells me he can’t move. He rolls and groans but can’t say what’s wrong. He’s not an old man so there’s clearly something. He used to be so fit: he played football, he had a dog he’d walk for miles, he baked his own bread. Yesterday was one of those bad days so he has another GP appointment tomorrow. This is how we live now – one day at a time without planning or hoping, or looking too far into the future.
February and March were particularly rough. With Christmas and New Year over, the days were dark, quiet and cold. Even now, he is still living in thermals and sleeping under extra duvets. He has no central heating in his flat. I’ve been trying to get him into new accommodation, somewhere warm and dry, where the ceiling isn’t caving in because of the damp. Somewhere safe; there’s always screaming and shouting where he lives and I’ve turned up to find police tape cordoning off his building.
Finding something suitable has been a nightmare. I’m an educated person and even I am stumped by the endless bureaucracy. I will think I have put him on a waiting list but when I try to follow up – what are his options? How long will the wait be? – I just get an automated email or a leaflet in the post that doesn’t answer any of my questions. Every government website seems impossible to navigate and I think it’s deliberate. There’s usually no phone number, no email address. My laptop and phone are both really old models and there’s no way I can afford new devices or updates or technical help. I often wonder if my technology just isn’t compatible with the right systems. I can’t be the only one.
I do the shopping for us. The cost is easily two-and-a-half times what it was last year. The only reason I’m managing OK is because I’ve been getting vouchers from the food bank. I look after my dad in the daytime and I don’t go out much in the evening – it’s unaffordable – so I stay in, read, watch TV. I’m endlessly angry about our situation so I try not to engage too much with the news. Instead, I get my news from lefty comedians – that way it at least comes with a laugh. My dad has a dark sense of humour, too, and a wicked accent – old school, deep Midlands. No one young talks like that any more. Spending so much time together isn’t always easy, but we still manage to laugh.
My hope for the summer is a new home for him in a ground-floor flat somewhere safe and comfortable, where he can start building his strength. He wants a dog when he’s able to walk one – he’s always had dogs in the past – and who knows, maybe it will be possible. If all that happens, we’ll be doing all right.
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
