I didn’t for a very long time, I just got on with it, I left my job when mum became too ill, I just saw it as my responsibility to look after her as she had looked after me. My mum has dementia and a spinal condition which means she is unable to walk.
I moved to part-time work when my mum was initially diagnosed and had several falls. Later I had to leave work when I came home one day and mum couldn’t tell me whether she had let strangers into the house or not – she just wasn’t sure.
I didn’t realise the impact of looking after my mum as I’ve been doing this for several years, and life slowly changes. I feel like I’ve lost my identity, that I’ve become invisible to my family and friends and I resent the fact that I’m doing this alone. Everyone means well, and offers of help are there but they don’t materialise or if they do they’re for one-off occasions.
Don’t get me wrong, I love looking after my mum, beautiful moments like that stolen smile first thing in the morning but it is also lonely, frustrating, guilt-ridden, sad & tough. It’s physically and emotionally draining, and can feel like I’m riding a never-ending rollercoaster each day. Like this week which has been the hardest that I’ve experienced with my mum. Mum’s been dealing with her dementia and increased confusion from a UTI. The UTI is a curse that I could launch several expletives over, it’s changed her and made her constantly scared and anxious, and despite the meds, seems to have moved her dementia on to the next stage.
So it’s hard but then I look at what society offers us – the government provides us with a weekly benefit, called Carers Allowance, where you could get £66.15 a week if you care for someone at least 35 hours a week and they get certain benefits. That’s not a lot and it doesn’t go far as, aptly summed up by one Twitter user, Katy Styles last year
What did I spend my £64.60 Carers Allowance on this week? I spent £76 on my train travel to a London hospital to discuss the complex eye surgery I need. It didn’t even cover it. Is it any wonder carers neglect their own health and wellbeing #ValueCarers— Katy Styles (@WillowKaty) August 24, 2018
Compared to what I earned when I worked that’s a pittance, yet we save the government billions in providing care 24/7, if you’re lucky you may have outside carers that help which you pay for privately or is subsided by your council. Social care plans are a joke with any government, no one will step up and take responsibility for fear of alienating voters, so as carers we take up the burden where we can.
The reality is that just by changing careers to become a carer we’re really making a huge invisible contribution to society, but as carers, we are undervalued and underpaid members of society. But that contribution is priceless to our loved ones, so yes I recognise myself as a carer, and proud to be. We just need to get society to recognise that contribution as we switch from our career to being a carer. Who would have thought the difference that little e could make? It is wonderfully captured in this artwork by Caron Stuart-Cole.
If you want to help get carers valued then sign up for the ‘We Care Campaign’ a volunteer led campaign run by unpaid carers – “We Care is campaigning for all of the UK’s unpaid carers to be valued”
So do you recognise yourself as a carer?