What exactly is a carer?

By Emma Morris – Continuous Improvement Analyst, Sheffield Hallam University

A few weeks ago, I contacted the Equality, Diversity and Inclusion team about the Parents & Carers Network Group. I was interested in knowing exactly what type of support is available for staff at SHU who have caring responsibilities, as well as looking for opportunities to talk to other carers about their experiences. The reason for all of this is that I myself am a carer. I’ve actually been a carer for over 7 years but it’s taken me a very long time to accept that fact, and it turns out I’m not alone in that struggle.

When most people think of the word carer, they might envisage a paid professional, visiting several people a day, handing out medication, preparing meals or providing assistance with bathing and personal grooming on a daily basis. Actually, it turns out that the NHS definition of a carer is ‘anyone (children and adults) who looks after a family member, partner or friend that needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.’
It’s estimated there are over 5.4 million unpaid carers in England, and on average it takes each individual around 2 years to fully recognise that they are not just a relative or a friend, but they are classified as a carer.

So why are people reluctant to call themselves a carer? Perhaps it’s down to the fact that the journey into a caring role can be such a subtle one that we don’t even realise its happening. What starts out as popping round to do some light cleaning for an aging relative can slowly transition into an unpredictable and emotionally challenging cycle of managing more complex care needs. There’s also the fact that the role of a carer can be hugely varied, it means different things to different people, so it’s almost impossible to compare yourself to what you might see as a ‘typical’ carer. Of course there are many cases when that care eventually has to be managed by medical professionals, but those who provide a less complex level of care will often do so without any support whatsoever simply because they see it as their ‘duty’.

My own caring experience started in 2011 when my Grandmother was diagnosed with cancer. My Grandparents still lived independently but it became clear that they needed a bit of extra help around the house. As I was the only family member who lived close enough, I offered to visit on a fortnightly basis to help with basic household tasks. Not long after, I found myself at the hospital being shown how to administer injections. I remember being asked by the nurse if I was my Grandmothers carer and I laughed and said ‘no, I’m just the granddaughter’. As the years passed, they both relied on me more heavily but it happened so slowly that I barely noticed.
In December 2016 my Grandmother passed away and a lot changed. Not only did my Grandad now rely on me for help with the domestic tasks, as well his increasing medical needs, but he now needed something much more important – companionship and emotional support. This was a role I was never prepared for and there were times when I really felt the strain.

I’ll be honest, even though Grandad is now 89 and despite everything he’s been through, he’s still pretty self-sufficient and there are plenty of weeks where the ‘care’ I provide is minimal. A typical week will consist of numerous phone calls to talk about his favourite topics (usually next door’s bins, the stray cat he’s adopted and his love/hate relationship with the TiVo box), as well as the usual Saturday visit to do the shopping and cleaning. Even though those tasks eat into my evenings and weekends, those are the ‘easy’ weeks that I treasure. Unfortunately, a good week can turn into a bad week very quickly. Falls and infections are usually the biggest challenges, and there can be long stretches of time where the Northern General Hospital feels like my second home. It’s usually during those more difficult times when I feel I need someone to talk to; someone who understands the unique complexities of looking after an elderly relative.

A few months ago my Grandad was very ill with sepsis and during a particularly stressful couple of weeks I was signposted to the Sheffield Carers Centre by a district nurse. I rang them fully expecting them to say that support was only available for those who provide primary and full-time care, but after a long and very eye-opening chat with one of their advisors, I felt like a weight had been lifted. I realised there was a huge amount of support out there, support that I could have been accessing for years! I was able to speak to a few different organisations and get advice about various things such as benefits, access to adult social services, hospital transport and grants for respite care, but the most valuable thing for me was just being able to chat to someone who understood what I was feeling.

Whether you are currently a carer or you are starting to think about taking on caring responsibilities (or maybe just somewhere in-between), then we would love to hear from you, particularly if you have any suggestions on how you think the Parents and Carers Network could help you. Similarly if you know of a colleague who provides care, then we would encourage you to send them this blog. Our hope is that the network will enable carers to link up with other colleagues across the University to share their experiences, ask questions or vent their frustrations and we can’t do that without your input and support, so if you’re interested in volunteering or just finding out a bit more then please contact us – ! SHU Parents and Carers Network