“What do you do?” “I’m a carer”
There’s a ton of stuff in the news about the cost of care for the elderly (or there was when I started writing this, before NOTW decided to metaphorically fart down the phone lines of grieving parents), which made me think I should share my own experiences as a carer. I never talk about this stuff because it’s not especially fun to discuss, and also these personal blog entries always risk coming across like attention seeking or the kind of self-obsessive, woe-is-me, first world gripes people think about when they hear the phrase “I write a blog.” Anyway, on we go.
I was my grandfather’s carer for eight years, from the ages of twenty-two to thirty. I fell into it at first, having left my job after seriously injuring my back, and not long after the death of my grandma, at which time his physical state had deteriorated to the point he could no longer do a lot of essential tasks for himself. So when it began, barring the physio sessions, my time was my own, as I had a fair bit of cash in the bank, I was young, and he only lived across the street. I figured it would be a temporary thing. It wasn’t.
I should make it clear that throughout the whole process, there was one fundamental fact hanging over my head. If I didn’t continue this role, he would have been put into a home. That was the only other option. I was the buffer. Or, what probably would have happened, my mum would have just quit her job to do what I was doing, and give up the life she had, but I figure she’d sacrificed a ton already to raise me by herself, and I was younger, and how long can this go on for, anyway?
For that first year or so, it wasn’t hugely taxing, just the doling out of meals, beverages and medicines, and the occasional wildcard incident. As he couldn’t use his hands, and got around – very slowly – on a walker, any food or drink, and pretty quickly, getting in and out of chairs and going to the bathroom, were all things that needed someone’s help. My mum and aunt did their share too, as far as shopping, evening meals, laundry and such, but they both had “proper” jobs. My important role was having to be around in the day (and at night, but we’ll get to that). Anyone with a frail and elderly relative knows how common falls are. Retirement villages must be like some weird episode of Jackass. “I’m Beryl, and this is Slipping Over in the Kitchen and Pulling a Hot Pan Down on Myself!”
During those eight years, I literally couldn’t go anywhere. We did have outside care at various points; for a few years, a nurse would come to get him up in the mornings, but that type of help only stretches so far. It’s no exaggeration to say that I barely travelled further than twenty yards in a single stretch in almost a decade. There were no days, nights or evenings out, and certainly no chance for Beach Diaries. Beyond the first year, I was constantly in and out of his place randomly throughout the day and night. During the summer, I’d chance an hour in the garden only to come indoors to an answering machine message that’d been dialled in from a position laying on the floor. It would have made for a bad series of Beach Diaries the long, hot summer I spent emptying a catheter every couple of hours.
The lack of peace of mind in general was one of the worst things. The last five years I don’t think I had a single night’s sleep that wasn’t fractured by either an actual phone call, or my laying there awake and waiting for one that didn’t come anyway, and going over there at four in the morning. Or I’d see that he’d left a light on, and wouldn’t know if it was because he’d just fallen asleep with it on, or fallen out of bed, so I’d head on over. The phone was like the red one Batman used to get calls from Commissioner Gordon on, and could and would go at multiple random times throughout the day, with usually a toilet-related emergency theme.
Obviously there were no vacations, not a single day. I could cover for the others and their evening-tea/bedtime shifts, but for nobody could cover for me without using their vacation time to stay there and do what I was doing all day. There’d be periods where he’d be in hospital for the odd week, but it’s not like I could plan for that in advance, or had the money to just book up somewhere on the fly. Carer’s allowance split three ways is basically nothing. I wrote to keep myself sane. I had nothing if not an extraordinary amount of time by myself, so I devoured movies and books, and learned how to rite gud and that.
The absolute worst part about being a carer for a family member is the attitude that what you’re doing isn’t a proper job. I can count on the fingers of no hands the times anyone besides my mum even acknowledging what I was doing as a job, let alone asking how I was coping, or offering to take over for a week or a weekend so I could have a break, let alone “Hey, 5/6/7/8 years is probably enough, how about I take over for now?” It always gets that kind of layabout sneer. “Have you got a job yet?” This is my fucking job. I was so livid – about the situation, not ever my grandad, absolutely not his fault – as I could see the first half of my twenties flying by, I told myself that, going one better than all the dead rockstars, I’d be done when I hit 26. I don’t know if I ever believed it, but I swore to myself that they’d have to find a good care home or whatever had to be done, but I couldn’t have the rest of my life wither away like that.
But then he went into respite care for a week, and was placed into a local care home. Visiting him there was the single most crushing experience of my life. A bunch of old people, wheeled into the cramped, fusty lounge because they were easier to keep an eye on when they were all together, sat in silence, with empty Ludo boards and a dusty CRT television tuned to programs that were too quiet for anyone to hear, all just waiting to die. The ones who were with it enough to be awake or conscious of their surroundings had that pound-puppy look in their eyes, desperate for someone to talk to them, desperate for some acknowledgement or stimulation, or human fucking contact. The grim reaper may as well have been sat in the corner, checking his watch and impatiently tapping a cloaked foot against the floor. I talked to an old lady who’d barely turned sixty and just had a couple of bad knees that put her in a wheelchair, but who’d been shoved in by her daughter the second she was eligible. She had twenty-five years of youth on my grandad, but she’d just been dumped there like a lame puppy in a shoebox, her daughter’s screeching tiremarks almost visible on the driveway. Still 100% with it mentally, she was thoroughly aware of the inescapable bleakness of the situation. For mealtimes, they sat my grandad at a small table with a mentally handicapped old man who usually ate by himself, because he cried hysterically every time they turned on the lights. So yeah, the 26 thing went out of the window that day. That place is gone now.
To dwell more on dead rockstars and wasted years, the twenties are supposed to be the fun part of your life, right? Thirties are for settling down and being all grown up, but twenties are the part where you’re young and alive, and you need to fill your hours with the kind of good stuff that leaves you with memories you’ll be able to look back on when you are old; friends, relationships, travel; well, I went back and forth to Worthing hospital a fuckload of times, but I doubt Michael Palin’s eyeing that up for his next travelogue. I wasn’t having a Girls Gone Wild style existence with all friends and girls and whatnot, or even just regular, normal, good conversations, or those nights where you sit around shooting the shit with your buddies. Instead, I was probably emptying a bottle of someone else’s urine into the toilet. No people, no conversations, nothing like that, just everyone else going off to live their lives, move away, get married, settle into careers or see the world. Believe me, I know how bitter that sounds, but that shit really does eat away at you, especially when there’s so much talk about “you only live once” and “make the most of it,” and you feel like you fell into a fucking wormhole aged 22 and came out the other side a day later to find yourself ten years down the line. The days all just blended into one long one, and I literally have no real memories from that period, no reference points to the timeframe of where I was within those eight years, because nothing happened other than the job of being a carer.
The whole time I was thinking that when it was all over, I could finally start living my life. That was the light at the end of the tunnel. “It’s cool, someday I’ll get my chance. I’ll do all the stuff that everyone else gets to do, and I’ll live twice as hard to make up for it.” Of course the reality was different. When it was all over, I’d just turned thirty, and blundered back out into the world in the midst of the worst economy the country had seen for two decades, with a résumé that essentially said “Last eight years – taking an old man to the toilet,” and the social skills you’d expect from someone who’d only spoken to about five people in that whole time. Plus, the personal financial fallout from those eight years is, barring some sudden huge success with the writing, going to follow me around for a long, long time. I’m a hobo in all but name. Speaking of the writing, that was the other light at the end of the tunnel, my knowing I’d never have had the opportunity to get to the level I had without such an arse-load of alone time, and the thought that someday I’d have an awesome life because of my work and know that it wouldn’t have happened had I not had all that time to perfect my craft. But if that doesn’t happen… well, just buy my shit and make it happen, okay?
So, that’s how I spent my twenties. Oh, and you’re probably wondering, but my grandad didn’t die or anything like that, he just physically deteriorated to a level of need where we was finally deemed eligible to get into an awesome care home that’s genuinely more like a five star hotel than the kind of Abe Simpson thing you’re probably thinking. I visit a couple of times a week, and he’s coming up to ninety next month. I’m utterly convinced that if he’d been placed into an institution like the one he did a week in, or the kind of place we’d had to have stuck him if there’d been nobody to take care of him at home, he’d have given up, and wouldn’t still be here. At no point do I want people to think I’m angry or resentful of my grandfather, because I’m absolutely not. We all get old, all of us. Unless you die before you get there, we’ll all be elderly, and all our bodies are going to fail us. It’s all going to come down to the support system you have. When your body or mind fails, are your people going to see you good, or are you going to be shoved away because you’re sixty and have two bad knees?
What I’m angry at is more the attitude of people, that it’s somehow not a job, or not worthy, because it’s family. A lot of people live the (sub)life of a carer, and I don’t know what the answer is as far as the system goes, I’m not a political animal, but the attitude is something else. If you think it’s not a job, and maybe you’ve even got a family member who does this for another family member, I’m going to assume you’d be cool with shoving an elderly relative into a home and letting them wither and die, far from where you’d have to worry or think about that. Out of sight, out of mind. If that’s you, fuck you, and when old age finds you, I hope it’s cruel and frightening.
I’m not sure what the point of all this is. I feel weird about it being up here, as I really don’t want to come across all worthy and “look what I did,” and it probably does read as the woe-is-me I was dreading. It’s been sat around on my hard drive for a few days as it is, and I might take it down. Maybe it’s cathartic to just get it all out. And don’t worry, regular readers, the next blog will probably be a story about a penis that’s got its own penis or something. That’s the kind of thing you like, isn’t it?