What Is A Carer?
I started writing this blog when my mum was first diagnosed with Stage IV Ovarian Cancer in March 2017. I wanted to document her treatment and share tips and tricks that I wish someone had told us as she started chemotherapy. But the blog soon turned into more. I found other people, thousands of people, also struggling to live with cancer and I discovered other people like me, people who took care of loved ones who needed assistance due to a medical condition. I discovered people who were willing to sacrifice other things in their life to take care for someone else, it wasn’t because of my culture that I did this for my mother, there are others too in the UK, who do this. There definitely are other carers in the world, in fact there are 6.5 million carers in the UK alone.
One of the things that would not have happened if I had not started this blog is that I would not have been invited by Macmillan to attend a Carers’ Parliamentary reception during Carers’ Week on Monday 11th June. For me, it’s an honour to be able to represent carers’ and highlight what they are doing for society, saving the economy millions in health and community costs. Being a carer has been the most physically exhausting and emotionally draining thing I have ever done. But it is also the most rewarding thing I’ve done aswell. As Carers’ Week launches on the 11th June and I have the great honour of representing Carers’ at Westminster, I have started to think about What a Carer Is? What Is Important To Them? and the improvements that can be made to help Carers.
For me, the most important thing to highlight and what I don’t think people realise is the vast amount and diversity of the skills needed when you are supporting/ assisting someone in their day to day life. For many carers, this is not a career move that we’ve chosen to undertake it’s instead a decision we’ve made out of necessity for which we have adapted to. Some of these skills are developed over time, some areas, we find we need help with and for others, instinct kicks in and our innate ability to care for someone we love overrides everything else.
Organisation and Planning – when organisations questioned me as to the type of duties I undertook as a carer for my mother, one of the main areas they questioned me about was whether I was responsible for the administrative areas/ paperwork in my mom’s life. This is a large part of being a carer and I liken it to the role of being a personal assistant. I developed strong organisational skills to be able to manage my mum’s medical calendar which doesn’t just consist of routine hospital appointments and health care visits but also when and which medication to take and things like banking. There is a lot of responsibility and pressure that can be placed on a carer here as the consequences of, for example, missing a dosage of medication or missing a medical appointment can be high.
Medical/ First Aid training – I cared for my Mother whilst she underwent extensive Chemotherapy treatment aswell as the recovery process from a 9 hour intensive surgical procedure. I have no medical background and have never had First Aid training, however, she relied on me to support her through episodes when she was vomiting, to know when to call for an ambulance or to seek advice from a dedicated Chemotherapy triage line. I relied on my instincts; the information that I had been provided with and my naturally calm disposition – which I can assure you was tested on more than one occasion! I would like to see First aid classes offered to carers in the UK – just having this information as support would bring security and comfort knowing that I could handle the situation, should anything unexpected happen.
Resources – in some areas, I felt like I was given too much information, in some areas, I wasn’t given enough. Some information was given at a time that I didn’t need it and some information was just too scary to comprehend. As such, a proportion of my time was dedicated to research and finding out information to answer questions that there may well be.
Soft skills – away from the practical skills, the emotional skills are just as, if not more important than the skills above. Being a Carer can be isolating, it is not just a full- time job but a change in lifestyle which consumes how you lead your life. For that reason, it’s important to ensure there is self- awareness of how you are feeling. To ensure you take time for yourself. There are some support groups for carers but remember that carers often find it difficult to make time for themselves so more needs to be done to ensure there are safe and vetted online support groups or helplines for those that need to talk to someone. Sometimes, being a Carer is a lot like being a Psychiatrist, it’s important to know how the person you are looking after is feeling. When my Mother was diagnosed with Ovarian Cancer, at the beginning of the journey we made a pact. We knew that this was going to be a tough and difficult journey and we knew that on more than one occasion, one of us would be frustrated at either each other or something else and we knew that it would not be personal. We made a pact that whatever happened, it’s not personal, we don’t mean it and there’s no hard feelings. For me also, my GP was very understanding and they always made time to ask me how I was feeling, I was lucky in that respect but I would like to see consistency in support from GP practices for all carers, who may not be easily recognisable and fall through the system.
I’m excited to be a part of the Parliamentary reception to be able to give people insight into the diversity of the life as a carer. Being a carer changed my life considerably and yet there is so little recognition of the great service that is provided by carers.