It’s been two years and three months since Nick died, two years and a month since the funeral, and twenty four months since the end of my Carers’ Allowance.
The most, and possibly only, generous gesture in the entire process of CA is that when the person you cared for dies, you get eight more weeks of the payment while you wind up affairs on behalf of the deceased. I must say, I was grateful for that. Not only for the money, small though it is, but for the recognition that even after the person is gone, your caring role doesn’t simply stop dead in its tracks. You might become a carer overnight but you don’t un-become one just like that.
Two years on, I’m not sure if that sensibility has entirely left the building. That sense of acute responsibility, being always on the alert and poised for action, always aware of the next thing that needs to be done, never quite able to relax completely because you know from experience that you just daren’t – when you’re caring for a vulnerable or sick person, those are reactions that you carry in your body, every cell on the alert, every part of you involved. I’ve carried that with me for a long time. It’s only now that I am starting to reassess.
I suppose it didn’t help that just a few months after Nick died, Covid happened and suddenly we were in a different kind of emergency mode. I didn’t make any bread over lockdown, or manage to grow an avocado stone into a lush sapling (though it did sprout into a little leafy plant until the cat took a dislike to it) but I did write a book, reliving some of the strongest memories of my family and the experience of caring. And I went out to work, because for a sixty two year old woman who’d been out of the employment market for some years (though occupied full time just keeping my brother alive and on an even keel), there was no career path to resume, no furlough or self employment grant, no working from home.
Universal Credit didn’t work out for me because as a married woman they automatically means-test your partner. My husband had forfeited a large chunk of his pension to retire early on mental health grounds because his job was killing him. We didn’t qualify for UC because he’d had Covid very early on which left him very shaky for weeks. He wasn’t physically fit for work or willing to think about looking for it at such a precarious time. Especially when the world had shut down so much that the available jobs involved going to work in public places with limited access to PPE.
It took several months for them to let us know their decision, while meanwhile younger people we knew who’d applied at the same time were getting UC with no questions asked, some while also on furlough for a part time job in a pub! Later on when support grants were offered to the newly self employed, I was ineligible for that too because the £67 a week Carers' Allowance that had been my sole income in the year before Covid meant that I had "earned too much". It sometimes seemed that support was available to all comers except carers, the one sector in society who are not just unacknowledged but penalised for doing their job.
I didn’t mind going out to work; still reeling from the bereavement and sudden loss of purpose, I wanted to work.
The immediate option, the one that you’re immediately offered in this situation, is of course care work. I’d done it before and it was a consideration, but generally when you have been the carer doing everything for a person you love, being their warrior and their second brain, chasing the appointments and barking your shins on their wheelchair, much too familiar with the language of tablet dispensing, red buttons and bedsores, grab rails and continence care, you have done enough. It’s not that you’re too proud, you’re just exhausted. The last thing you want is to do all that for someone else, often working for the kind of care agency you never wanted going anywhere near your person. And anyway, you are recently bereaved and still grieving.
So, no to paid care work. Instead I got a job as a cleaner.
I’m still doing it. Anyone who has ever been to my house would laugh, but when it’s for someone else, I like it – the head-clearing satisfaction of sweeping crumbs off a surface, whisking cobwebs from corners, turning chaos into order. Leaving it all clean and tidy and closing the door before anyone comes in and trashes it (which is what happens in your own house of course, which is why cleaning your own house is different)
It’s not what you would call a high status role, I know, and certainly not the best paid (though I get considerably more than a care worker), but at the age of sixty two when caring has been your main occupation, what exactly are you supposed to do? What career slot is just waiting for you to fit back into it? As an ex carer, the range of skills you will have is extraordinary, but what recruitment agency understands that? Where do you even start? Who understands in normal times, let alone during a pandemic?
And so I take the pragmatic option, and clean, and do a bit of this and that and manage the unpredictability of freelance work, and I get by. And consider myself so fortunate.
But life after caring is a wilderness, uncharted, map-less. You land bruised and confused in this new country, no longer sure of your identity. If you're the sole survivor of a Huntington's family then double, treble the sense of shock and confusion and loss of any certainty at all. You are Jason Bourne, only without the guns and the glamour. And throughout all this you are still recently bereaved and still grieving. And left to find your own way, and some of us manage, and some of us don’t, and you just have to hope that someone else who has been through the same thing will hold out an encouraging hand to help you through. I’m writing this to do just that thing, but also to remind myself that when Nick died I landed in new territory like Jason Bourne, having to reconstruct an identity with no idea of how or what to do next, and I’m still figuring it out, but I’m doing bloody well. And if you are reading this as an ex-carer trying to find your way, however difficult and painful it might feel, so are you.
