Coming to terms with calling myself a carer

I’m not a big fan of labels. They can too easily pigeon-hole people, creating limiting and disempowering caricatures of people.

‘Carer’ was probably my least favourite. For me it denoted someone - always a woman - providing physical, monotonous personal care for someone, usually house bound, with little freedom or fun in their lives.

I certainly didn’t see myself as one.

After all, I was (and am) doing what any half-decent daughter or sibling or mother does: supporting family members with tasks they aren’t able to do for themselves.

The thing is, as we all know, elderly parents’ needs increase often gradually, and we find ourselves handling an increasing ‘portfolio’ of what is essentially ‘care’ on top of our jobs and our own family’s lives. But then that portfolio grew exponentially over the past 3-4 years as my mother’s physical and mental decline propelled us (mostly me) to find a way of enabling my older brother to become independent of her. With only a recent diagnosis of autism/ADHD and complex learning difficulties, he has lived with her all his life. Unable to hold down paid employment, he is very capable of cooking or fetching things she can’t due to her mild physical disabilities. But this arrangement had to come to an end when she started to need professional care.

Add to that my own daughter having a late diagnosis of autism and sensory processing issues whilst at University, and you can get the picture.

It took a couple of years of this until I realised I probably could - and should - describe myself as a carer. It was triggered one November day in 2023. I had called a friend of my mother’s who has two autistic adult sons, one of whom has complex needs. I was trying to find an agency that supplied support workers/PAs for my brother, to unravel the benefits system and work out the best way to enable him to learn independence skills and where to live. I was hitting dead ends.

‘Have you heard of the charity, Carers in Herts?’ she said. ‘They’re brilliant. They’ll sign-post you to local services but more importantly, they’ll also check in on you as a carer. You are a carer, after all, you do know that?’

‘Am I?’ I thought. I wasn’t (and still don’t) do hands-on care like washing, changing beds or helping my mother get dressed. So how could that be me? Depending on the day of the week, I felt (and feel) more like a glorified PA, project manager, counsellor, tech support officer, benefits researcher, medical adviser, finance manager, health & safety officer, emergency support unit and general advice line for any query about every aspect of modern life (and breathe!)

In any one week (and yes, I mean one) this can range from the mundane ‘Do you have a shoe box? I need to post my orthotic shoes for re-heeling’’ (mother) ‘Can you call me to discuss the PIP appeal?’ (daughter) to the ridiculous ‘There’s a rat in my garden, how do I get rid of it?’ and the urgent ‘I’ve run out of money to buy my food shop’ (brother) and ‘There’s water dripping from the sitting room ceiling’ (mother). That was last month. Sigh.

A friend once joked that I should put a Citizens Advice Bureau sign put up outside our front door!

Sound familiar, anyone?

I looked again at the Carers Assessment form that the social worker had left me to complete. She had recently seen my Mum (in her capacity as carer for my brother) but she said I was very much someone who needed to be on ‘her list’. It had asked me to list who would struggle if I became unwell. I gulped. Er, right, yes….a lot of people. And whilst yes, I have a capable husband, he struggles with exhaustion related to sensory overload and cognitive processing (he has late diagnosed ADHD/autism) and so has limited capacity beyond his work. My son was only 17 at the time and with a burgeoning school workload.

Khadra Awomer, in her recent post this week for Carers Week ‘The Problem with asking ‘Are you a Caregiver’, made the insightful point that this question (Are you a carer?) is the wrong one. When we’re asked instead ‘Who depends on you?’ or ‘Who do you regularly help because of illness, disability, dementia, mental health difficulties, or age-related needs?’ the answer is often alarmingly clear.

So I squared up to reality and accepted that I was actually a ‘carer’. More than that, an ‘unpaid carer’. The sheer volume of tasks and knotty issues that needed my attention made finding a new contract after my last one had ended very difficult. I conceded defeat and decided to focus fully on what I came to call ‘Operation Independence Day’ and then try and return to work. At least, that had been the plan.

I signed up to Carers in Herts, I filled in that form for the social worker, and I looked into benefits. I wasn’t eligible for any of them but I was eligible for a small direct payment to spend on an activity for my mental health. This took an aeon to be arranged and to come but I got it eventually. I spend it on open air swimming pool fees and choir fees.

I also signed up to Carers UK, the brilliant campaigning and signposting charity, learning about my rights, and agreeing to be on their roster of carers willing to speak to the media. When I did I had no idea I’d end up on BBC Breakfast one morning (as recounted in last month’s post) but I would happily do it again if it means I can help campaign for the millions of other unpaid carers who have it much tougher than I do.

Describing myself as a carer also pushed me into thinking a little more seriously about my own health and looking after me. What if I became unwell?? It didn’t bear thinking about. If I’m honest, that penny didn’t fully drop till I was near burnout myself 18 months later. It wasn’t about physical exercise (I have always kept moderately fit) it was more my mental health, my diet and being persistent in asking other people to step up and help.

Finding that support, as we all know, is tough. I’ve written before about my dislike of the constant emphasis by the authorities on ‘self-care’ when you can’t find someone else to step in for certain things. This is why Carers UK’s latest campaign to build carer friendly communities is so welcome and so important - we need communities of people to support us the carers, not simply for us to somehow battle on attempting to look after ourselves.

I have now got used to calling myself a carer and have changed my attitude to the label entirely. I need to use it for my own well-being as well as others if I am to access support. It also helps explain to others why I cannot do a full-time job at the moment, why we aren’t as financially stable as we used to be, and why I need to be strategic in what work I do return to. My move to becoming a part-time, freelance editor is one of those strategic (and enjoyable) choices.

Of course there is the risk that I will be put in a box, labelled under whatever category people view what a carer does, but the more we show the world what caring actually looks like (and there is no one size fits all here), the less likely that will happen.

The fact is, this is the new face of caring. As someone said to me after seeing me on BBC Breakfast last month: ‘It was so good to see someone representing us ‘carers’ who looked like me…'

How about you? Does any of this sound familiar? Do you feel like a carer? When did you start to call yourself one and has it helped?

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