This week is Carers Week – and it’s come in balmy weather. My daughter and I have picked elderflowers and made 2 gallons of cordial. In between the elections and my full-time work and the emergency appointments with London specialists.
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.
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 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 were somehow less important, less valued than others. We lost friends, we lost caste, we lost identity.
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. People forget about you, 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.)
To make this worse, family carers are often not seen as people in our own right but are defined by the condition of the person we care for: carers for dementia, for ASD, for Parkinsons, epilepsy, stroke, etc. Strange, as our own problems are easily identifiable and universal: exhaustion, stress, worry, loneliness, 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 Continue reading A Plea: We All Can Care for Carers!