Stepping Inside The Mind of One of the UK's 9 Million Carers
Did you know that there’s roughly 9.1 million people acting as unpaid carers here in the UK? That’s before you even consider the additional 4.5 million unpaid carers due to COVID-19. In addition, Carers UK estimates that 5 million people are juggling work with full time care. And that’s where my partner, Scott, and I come in.
We’re individually both self-employed, plus together we have our own small business. So, we juggle a full week of work with caring full time for Scott’s grandmother, Marie. Marie isn’t necessarily unwell, but she’s frail and housebound; she needs a frame to get around or a wheelchair when we leave the house. Left to her own devices she could possibly live on tea and sandwiches, but that’s about it. She needs help with pretty much everything, from personal care to cooking, collecting medication, shopping, appointments etc.
Scott and I both grew up and lived in London but made the move to sunny Weston-super-Mare in October 2019, one day after my 29th birthday. Honestly? We were not prepared for what it meant to be full time carers. And there’s two of us. Looking after someone who isn’t even sick sick. Just limited in her mobility. Being a carer is Tough. Tough with a capital T.
I think Scott and I had both anticipated that it was going to be a bit like having a housemate that needed a lot of support. Actually, it’s probably closer to suddenly having a child. A child that has a lifetime of experiences, opinions and an own way of doing things but is now incapable of doing things. I think that Marie has only recently come to terms with needing full time care. It’s not that she hasn’t needed care before, Scott’s mum had been doing as much of the caring as she could for the last four or so years (arguably, much longer than that) but previously Scott’s mum was able to juggle work and stay for long periods of time for years. But I guess the actuality of people living with her full time, rather than extended, ongoing visits, felt different. Perhaps, less deniable that she was getting older and more dependent.
It’s a weird situation to be in, caring for your partner’s grandmother when they’re in denial as to why you’re even there.
I think we’ve settled into a fairly easy breezy type of routine now (compared to what it was) and most of our days have a general rhythm. At the beginning, we were exhausted, we were exhausted and lacking in any type of us time, we couldn’t figure out how to carve out some time for us as a couple, we were exhausted, emotionally trying to manage a big move from our friends and family, as well as physically juggling work and care… and that was before the whole worldwide pandemic. Maybe if we hadn’t spent nine months in an on-and-off again lockdown, we might have been able to build in some date nights and time for us. But as it stands, the last time we were actually alone and did something together was September, when we stayed in Bristol for two nights for our anniversary, thanks to Scott’s parents coming to cover us.
We’re pretty sure that Marie has undiagnosed clinical OCD, and for those of you who don’t know, it’s Obsessive-Compulsive Disorder. And it’s not this cute, need to be extra tidy, it’s quite obviously all-consuming and it causes Marie a lot of stress. I would say she’s also fairly critical, or at least lacks understanding, of what it means to be self-employed and doesn’t see it as ‘real work’ and this combined with a, let’s call it a traditional, outlook on gender roles and the roles we play in the home, I’ve often felt a huge feeling of ineptitude. And judgement.
I can feel that she sees housework and things around the house as being my responsibility and I’ve spent a lot of the last year or so, trying to manage this expectation of keeping the house to her incredible standards whilst managing full time work and a small business. Along with my mental health and a relationship. Until the start of December when I had a really bad flare up of my asthma and I was struggling to breathe, even just walking around the house left me gasping for breath, but I was feeling all of this pressure to try and fulfil these unnecessary expectations, until I read an article about how the 40-hour work week was created with the expectation that someone else would be taking care of the domestic side of life, you weren’t supposed to try and juggle it all as just one person. And I felt this article release me. Although, I undoubtedly do more than my fair share of emotional labour.
I’m also so aware that I don’t think Marie always gets what she needs from this situation, we’re so busy that often her physical needs and wants are met and ticked off, but Monday – Friday, it can be difficult to give her the socialising that she probably desires, we’re worn out, we barely have any time for us, let alone to stop and chat too. Plus, there needs to be a lot of distance put between us and some of situations and conversations we’ve found ourselves in over the past year or so. Some things are still a bit too raw and recent.
Honestly, this last fourteen or so months has not been as I expected. And we certainly couldn’t have foreseen a global pandemic and all of the challenges that came with that. I think it’s incredible that some people take on this much alone, and when the person they’re caring for has additional needs, like being unwell or even greater reduced mobility.
I don’t know what the future holds for us here, I’m not sure that this situation is feasible long-term when our own lives as a couple have barely begun and I feel like Scott and I are almost paused, you know, things like growing our business, trying for tiny humans and even just the normal, fun things like being able to spontaneously go on holiday (again, maybe less so in 2020). But I don’t know how we balance the guilt and the weight of a situation that isn’t necessarily giving any of us what we need but is the best for the person that needs the care. For Marie, this scenario is the best-case outcome, there isn’t really an alternative at-home option. So, I don’t know if there’s necessarily a win for any of us here.
This is another one of those pieces that is just kind of unfinished and just stops because the story hasn’t finished yet. This is still mine – and possibly 9 million other people’s – lived, daily experience. It’s a frustrating, tiring cycle of trying to make sure that someone is living their absolute best life and sometimes it’s at your own detriment. And sometimes, it’s fine.
Written by Saloni Chamberlain
Hi, I'm Saloni, loni to most! A native Londoner, I've recently relocated with my partner and our two cats to sunny Weston-super-Mare! I work as a freelance writer and I think I'm generally quite funny. My favourite word is plethora, I've never said it out loud but it's just so fancy written down.