There are an estimated 6.5 million unpaid carers in the UK. They’re people who support a family member, a friend or partner who’s ill, frail or disabled.
Today’s the start of Carers’ Week, an annual week of campaigning which aims to:
• Draw attention to the role of carers and celebrate the contribution they make
• Help people recognise that they are carers and help them access support
• Highlight the need for sustainable funding for services, both for carers and the people they care for
This year’s campaign focuses on the fact that every day 6,000 people take on new caring responsibilities. These aren’t people who’ve suddenly come over all philanthropic. They’re people who’ve by necessity had to step in so someone they care about won’t be at risk.
The campaign’s made me think a lot about the relationship between carers and the people they care for. It’s all too easy to slip into lazy stereotypes, casting carers as noble people doing their duty, with the people they care for being the passive victims of difficult circumstances. The reality is that providing and receiving care is much more complex.
At least ten of the UK’s 6.5 million unpaid carers help me. The personal budget I get from my local Social Care team means I’m able to pay for some of my care, some of the time. But I also rely heavily on my friends and family to meet the gaps in my support, which means that every week I’m given at least 50 hours of unpaid care. If these were paid for, the annual cost would be about £26,000.
I couldn’t dispense with the care I receive, paid for or otherwise, without my life being unrecognisably different. But there are challenges about being a carer and about being cared for which are not often talked about, and I want share some of these difficulties as someone with on-going care needs. It’s something I find hard to think about and the emotions and thoughts that arise often feel hard to untangle, so bear with me.
A Delicate Balance
Despite being brilliantly and sensitively supported by a core group of very close friends, there’ve been moments when my relationships with them have felt out of balance.
In times of tension or disagreement, carers may say something like, ‘After everything I’ve done for you.’ Equally, I sometimes get drawn into thoughts of self-pity or into feeling that I’m a burden to those who care for me. Sometimes this feeling of imbalance is caused by the practicalities of daily life, like having to negotiate to do particular activities, or having to accept support even when I don’t want it for example.
Sometimes the distinction between someone being my friend but also my carer can get blurred, particularly with those who support me the most, and this can be difficult for everyone. I remember finding it upsetting when I heard Fat Sister tell someone she hadn’t had a day off in two weeks because she’d been working and then supporting me as well. I understood this, but I always find it hard when people I love describe being with me as work.
I often feel wary about saying how I really feel about something because I’m worried about seeming ungrateful or dissatisfied. For example, when I once told Leftwing Idiot I felt lonely, he was upset and told me how hard it was for him to hear me say this because of all the time and energy he and Poppy put in to making sure I didn’t feel that way. The result was that we couldn’t have an open discussion about what I was really feeling.
Guilt and Worry
I worry about the people who care for me much more than they probably realise. I know the support they provide has an impact on many aspects of their lives, including:
• Their relationships with each other, with their partners and with their other friends
• Their health
• Their work
• The amount and quality of their leisure time
I’m always looking for ways to make things easier but I know this isn’t always helpful because I’ve got a tendency to make assumptions about what’s best for my carers rather than discuss things openly with them.
A huge amount of planning and organisation goes into being cared for. My every waking and sleeping moment is accounted for, and this can be challenging both for me and for my carers, especially when plans fall through and something goes wrong. Feelings of guilt on both sides have can be difficult to manage when this happens. For example I recently injured myself during a ‘ticcing fit’ when my care arrangements had briefly broken down. I felt guilty that I’d not planned better and I could tell that Leftwing Idiot and Fran also felt some degree of responsibility.
But while there are clear challenges to being a carer, or being cared for, there are also joys, and this blog’s full of examples of the close and trusting relationships I have with those who support me. At times these may be incredibly difficult, but they’re intensely wonderful much more often. I’ve shared amazing experiences and my horizons and expectations have widened.
Looking at the world of carers more generally, the policies of the current administration are making their lives and the lives of the people they care for much harder.
This makes it more important than ever that the reality of what it means to be a carer is recognised, and that we don’t accept the view that caring is a noble act of self-sacrifice.