This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The fourth and final contributor is Hemali Patel:
Hi, I am Hemali and I am an unpaid carer.
It still feels weird saying that. I often need to remind myself that is part of who I am now.
Why is that important? Because it gives me permission to:
- accept help,
- seek out support,
- cut myself some slack,
- be kinder to myself.
I only allowed myself to do the above when I let myself self-identify as an unpaid carer. Before then I never realised how much pressure I put on myself. That hasn’t stopped completely, but I am more self-aware and working towards “letting myself win”.
I secretly started thinking I could be an unpaid carer in Spring 2019.
My mum became bed and homebound in February 2019 – my life changed.
I no longer slept more than 3 hours (on average) a night – often broken sleep due to helping her move or to change dressings. Naturally, I was tired all the time, unable to focus, having trouble with memory and information recall (I’m still working on improving that one!).
My social life was slashed by 90% (minimum!) overnight (I was a self-proclaimed social butterfly, this was tough!). I became unreliable, regularly cancelling pre-arranged catchups, dinners, and birthday parties, often at the last minute because my mum needed me. It became difficult to maintain relationships, friendships, and connections with people from both my personal and professional life. My career was my purpose in life, my network and connections were working for me.
My career was counting down to lift-off…
3, 2, … STOP!
None of that mattered anymore, from 2019 onwards I had one priority and that was my mum. The management of her health, physical and mental, chasing for appointments, researching diagnoses, monitoring treatment, meticulously taking minutes of every conversation with every healthcare professional, challenging inconsistences and contradictions between consultants, chasing paid care givers and district nurses who might not show up, getting the nurses to teach us how to administer medication and dressings (funding cuts to the NHS meant a choice between missing treatments and mum becoming worse or DIY!). The list goes on… contact me if you want the extended monologue.
The real revelation happened when amongst all the mayhem we received a letter from the Department of Work and Pensions (DWP), stating that their assessor deemed that my mum was fully mobile, capable of taking care of herself and that they would be ceasing her disability allowance.
I cried that day, out of frustration. I have been strong for my family, for my mum, for my friends – my shoulders are there for you all. But I was exhausted. The energy I knew I needed to fight this battle was spent on ensuring my mum got access to medical professionals, diagnosis, and treatment; spent on keeping up with my workload, plate spinning, trying not to let my team down or let our community down, meeting deadlines, and not be the one who always says no to catching up.
I stumbled across the Carers UK website when searching for tips on filing for appeal against DWP (oh yeah, I am a nurse, GP assistant and legal clerk now – check me out!). That was the beginning of a life with a little less stress. They had clear information on all the steps in the process: applying for funding, the different types of appeals, links to all the relevant forms, when it would result in a court appearance etc. In short, I followed it step by step, saved time wasted on google, ended up in court – and won. Boom.
The strange thing is that now when I look back (pre-2019) I realise that my sister and I have been unpaid carers for most of our lives. From high school to university I lived with my grandma who was also bed and house bound. At the time we saw ourselves as doting granddaughters!
In 2009 my mum had a brain haemorrhage and the risks of paralysis increased every year, with every operation she had. In 2013 I decided it was time to move back to London and in with my parents so I could spend more time with her and be there if she needed me. Until last year, everything I had done just felt like my duty as a daughter and nothing more. I never felt I needed recognition, support, or a break – we didn’t think of ourselves as carers: “this is life, just get on with it”.
Self-identifying (even if it’s just to yourself) as an unpaid carer is not something to feel ashamed of or guilty about. You can be “doing your duty” as a family member or taking care of someone you love at the same time. I am not one for titles and labels, but opening yourself up to the prospect of being an unpaid carer you open yourself up to a helping hand, an ear that understands your struggles, opportunities for respite, people who understand that you might not reply for 2 weeks but will still send you weekly texts/emails just to check in on you (with no judgements! Thank you Megan from Carers UK 🙌⭐).
I have struggled with not living up to the high standards I have always set myself, especially professionally. Dealing with that has been difficult but knowing there is support amongst the King’s community has helped. Especially reading about the support, stance and action King’s, as an employer, takes for its workforce; it has helped deal with my carer guilt and alleviates some concerns around my capacity to commit to work during the lock-down and subsequently my job security. Most employers don’t recognise carers as much as parents.
My hope is that if you take anything away from this piece it is:
- almost everyone will be an unpaid carer in their lifetime (or be supported by one).
- you are doing the best you can (do not be so hard on yourself), and the care community is here for you!
- it is ok call yourself an unpaid carer (it doesn’t mean you are being forced to look after a loved one) – owning it opens a world of support, opportunities.
Hemali Patel
Head of Entrepreneurial Engagement, Entrepreneurship Institute