June 2020. Last week – National Carers Week – passed with even less than its usual muted tootle.
Not sure why. The pandemic has meant that unpaid carers are busier, lonelier, more stressed, less supported than ever. Maybe everyone was clapped out for the ‘real’ carers – you know, the ones we pay.
Carers Week is generally when those lucky enough not to be carers briefly acknowledge their plight, and then forget it again. This year we didn’t even bother to remember. The official hashtag #carersweek is matched by the unofficial #realcarersweek. Have a look: it is very illuminating. I’ve spent twenty years watching paint dry when it comes to raising awareness of the very existence of unpaid carers and their lives. It’s dispiriting.
Putting national apathy aside (and it was total) all I can imagine is that everybody in Britain – including our Prime Minister – is unaware of the void of difference between care workers (staunch, hardworking, poorly paid – but, crucially, paid) and unpaid carers, whose invisible lives are defined by high levels of ill-health (both physical and mental), poverty, stress and isolation. Carers are seven times more likely to be really lonely compared with the general public. Carers are in effect slaves, held hostage by love, saving the state billions. Many work 24/7 without a break for months, maybe years at a time. Unpaid carers have no pay, no sick leave (let alone sick pay), no holiday (let alone holiday pay), no employers pension contributions
Suffolk doesn’t even know how many unpaid carers it has – old couples locked behind doors, children worried sick that a parent may be collapsed when they get home, a sibling trying to keep a family member safe.
We do know that we have about 100,000 of them, because unpaid carers make up 13% of the population.
This year, lockdown gave everyone a sudden taste of being shut up involuntarily, unable to get out, unable to contact friends, losing livelihoods, careers, opportunities, very stressed, very concerned, very worried. And, like becoming a carer, it happened in a flash.
I am calling on the people of Suffolk – and those who represent them – to think what it would be like being locked down for life – for love. Without all the food parcels, the zoom quizzes, the sudden support networks and all the initiatives that are on offer now that sudden loss of of so much has hit the zeitgeist.
Clap for the carers? “Oh, of course we mean you you too.” Clap for no pay, no sick leave, no holiday, no work-related pension, no union representation – because you only work. You are not counted as workers.
Are the carers charities finally going to lobby to make real improvements to unpaid carers lives? Lobby for pay, sick leave, holiday entitlement, work-related pension contributions (because, sure as hell, carers work their socks off)? £67 Carers Allowance for the few, and a dismissive pat on the head for all is simply not enough!
This is the time to admit to and take responsibility for those hidden 100,000, many of whom – appallingly – we still can’t identify, still living lives of quiet desperation behind closed doors, whether the lockdown eases or not.
And having -finally – taken responsibility for them, we must be morally obliged to do something to make their lives better.
May 2017: Carers Week came in balmy weather. Otherwise it was like any other week. My daughter and I picked elderflowers and made 2 gallons of cordial. In between elections and my full-time work and the emergency appointments with London specialists. And her multiple, scary, uncontrolled, unpredictable seizures.
She and I are very much together, poor soul, whether she likes it or not. She is nice to me about this – but it must be a dreadful burden to be in your 20s and have your mother so very much in your life. But she cannot be left alone.
It’s nearly 17 years since the day she dropped like a stone as I baked her birthday cake and in a blink of an eye we went from two real people in our own right with lives to lead and places to go, to carer and cared for: symbols, stereotypes, political footballs -people who are somehow less important, less valued than others. We both lost friends, lost caste, lost identity. We were lesser people.
Like most family carers, I started out bewildered, unrecognising, waiting for things to return to ‘normal – a day that would never come. Indeed it was years before I realised I was a carer – and that as well as providing help I needed help myself.
For, make no mistake, being a family carer is hard. Being ‘on duty’ – responsible for keeping someone alive – 168 hours a week, every week, is quite as dreadful as it sounds. After a while, you have difficulty with everything: working, sleeping, socialising, existing.
Worst of all, you become invisible. Your work as a carer takes place in isolation, and though invaluable, is not valued. In fact the government refuses to call it work (though the cost of replacing you if you fall ill suggests the reverse). A family carer has no workmates. If you manage to keep a job on top of caring – and it’s no joke as a full-time carer – your colleagues may disregard you, disrespect you – even (obscurely) think less of you. (It’s not like caring is work is it?) People forget about you, either by accident or design, you lose your place in social plans, in activity groups, in parties. You may even get called a killjoy because you can’t leave the house!
So of course, you are lonely. And no, you don’t get used to it. And you don’t get used to how philosophical others are about your life. That they are not more concerned on your behalf. But they are not.
To make this worse, we family carers are often not seen as people in our own right but are defined by the condition of the person we care for: we are carers for dementia, for ASD, for Parkinsons, epilepsy, stroke, etc.
Strange, as our own problems as unpaid carers are easily identifiable and universal: exhaustion, invisibility, stress, worry, loneliness, poverty, despair. Family carers have twice the suicide rate of non carers. Go figure.
How to help? Carer charities set up initiatives to encourage carers to be ‘better carers’. Er.. why? What is really needed is for society to be better TO carers. I bet you it would lead to an immediate improvement in carers’ mental health.
1 in 10 people in the UK is a family carer – and the numbers are rising. There are several hundreds in Woodbridge and Melton alone. A lot of us – particularly those of working age -are women. In fact, by the time a British woman is 59 there is a 1 in 2 chance that she is or has been a family carer. A man has to reach 75 to have the same odds! Think of that, chaps, if you want to complain about WASPI women.
So not just in Carers Week, but any week, why not think if there’s someone – a friend, a neighbour – who has disappeared from your view– and ask whether they are living a life of quiet desperation, sitting at home with the person they love and care for?
And if they are, don’t say – as so many people have said to me over the years -“I won’t come round/phone/make contact because I know you are busy.” That is not thoughtful, it is an alibi. Instead, instead why not invite yourself round for coffee? a chat? bring a bunch of flowers? a picnic? spare some time?
Spread a little happiness! It will really be appreciated.
Support for Suffolk carers can be found from Suffolk Family Carers 01473 835477 www.suffolkfamilycarers.org/