Caring Aloud – Adrian’s Story
Published: 28 Nov 2024
In the next in our Caring Aloud series, we hear from Adrian, who talks candidly about the challenges of running your own business whilst caring, and his frustration at the lack of support for self-employed carers.
I’m the registered carer, and appointee, for my stepchild, who is now an adult, as well as two other members of my immediate family. My stepchild suffered a breakdown at the age of 14 which triggered a range of mental and cognitive issues. For the first three years, I didn’t refer to myself as a carer, or even think of myself in this way. I’ve subsequently learnt that, apparently, this self-denial isn’t uncommon. I think it’s because I didn’t know of any other carers who were ‘like me’ or were supporting a child who has needs like ours. None of the services we were talking to during this period referred to, or even recognised, my stepping into this role, or encouraged me to get support for myself, which just reinforced me not seeing myself as a carer for so long.
Since last year, I’d like to think I’ve become ‘braver’ in identifying as a carer. As someone who’s self-employed, clients usually commission me on the basis that I can be responsive to their needs. I’d been self-employed for 11 years when I became a carer, and that’s what my reputation had been built on, and what my clients valued about me. So, to make it a ‘first date’ disclosure with clients would be like saying to them ‘I’d love to work with you, but please be aware that at any moment I may need to cancel meetings, be delayed in completing projects etc’. The reason they’re thinking of hiring me is to help fill a gap they currently can’t manage by themselves; they’re looking for people to make things easier for them, not potentially bring new considerations.
Since ‘coming out’ publicly, and deliberately starting to try and identify and have conversations within communities of self-employed carers, I’ve realised that there about 500,000 of us out there in this position, and we’re all struggling to figure out how to safely have these types of conversations with clients and collaborators. Again, this is probably because none of us feel we know how to have these conversations, and because we don’t see anyone else ‘like us’ doing it, we don’t have the confidence to start having them ourselves. Hopefully, through my trying to be more open about being a carer, it will mean more carers like us are able to identify each other and build better peer support.
Being self-employed has definitely helped in managing the practicalities of being a carer. It’s easier to control when I am available for work, but this comes at a literal cost; since becoming a carer I’ve had to reduce and turn down the types of work I used to do, as it’s now much harder for me to be away from the family home. Professionally, I’m more isolated as I’m not able to spend time in person and at networking events so I’ve lost my profile and standing in some professional circles and communities, meaning less enquires and work. The result is that I’ve seen my earning steadily fall over the last few years. In turn, there’s a risk my professional skills and business development will start to erode, and so the current trend of lower earnings could get progressively worse in the future.
The support services for carers I’ve found so far have all been designed around the assumption that you’re a full-time carer with some form of respite or cover support for yourself in place, and neither applies to me. Occasionally I find a reference to something that’s been designed for people who are in salaried roles with employers. I’ve not found anything for the half a million of us who are self-employed or small business owners. The only support I’ve been able to access or even find as a carer for myself, despite multiple referrals and requests, has been where I’ve been able to find other carers who are also self-employed like me. Sharing parts of our stories with each other has offered some encouragement that ‘at least I’m not the only one’.
On a personal level, I’ve become more isolated as I don’t have the time I used to, to spend time with friends and other family members, and living on less income means I can’t afford to do the things I used to enjoy. It’s likely that our child will always need to live with us, and that I’ll always be their sole carer and source of support, so I’m also facing the prospect that when my parents pass away, I won’t have access to respite that offers me the time and space to grieve for them as I might need to, and that my own last moments will be worrying about who will continue to care for and support our child.
My wife and I came together after we’d both been through challenging divorces. We were optimistic and excited about the life we would be able to start to enjoy and were looking forward to being able to restart together, but taking on a caring role for our child means we’re now grieving the life we thought we would have together, and adjusting to the live we now face. I also have children from a previous marriage that I try and regularly spend time with too, supporting and encouraging them in the challenges they’re experiencing, which puts more pressure on trying to create and find a balance.
What I find so frustrating is that the half a million self-employed carers are not recognised in any policy or legislation so are excluded from the limited support and rights for carers. Having equality would go so way to helping the mental stress of being the most hidden of all hidden carers. Some form of business support for those of us who were already running and managing before we became carers would also help us to stabilise our household incomes – as someone who is self-employed, I’m not eligible for Carers Allowance. It would also allow us to better ‘do our bit’ for the wider economy; it’s estimated that by not giving support to this group of carers, there’s a cost to the country of more than £5bn a year in lost investment, tax, and job creation.
My hope for carers in the future is that it will be easier to talk about being a carer, and easier to understand how to work with one as an employee or contractor. I hope that carers will be more socially normalised – that we’ll see more characters in movies and TV shows that are living with caring responsibilities and trying to balance these with paid work of different types, and speakers at business conferences will share stories about how they’ve approached trying to balance work and caring. All of this will hopefully lessen the stigma and prejudice of the carer experience.
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