This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.
Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally expected to take on these roles whether they wish to or not and to the many men who are carers (as my grandfather was until my grandmother’s death) and for whom support seems so irrationally thin on the ground.
Of course I care for my disabled son, just as I care for his fighting fit older sister. But does that make me a carer? Back in January I was advised by a local Surestart Centre where I’d been attending a special needs baby group that I was and that I should register as such with my GP. I picked up the forms but couldn’t bring myself to fill them in. I left them out on the kitchen unit secretly hoping my partner would see them and an encourage me to complete them. Instead he said, ‘So that’s what we are now, is it? Carers. I thought we were parents.’
I totally understood and shared his suspicion of the label. Our son was under 1 at the time. Of course we had to do everything for him. Surely ‘carer’ was a more suitable label for others facing difficult, life-changing situations when typical family life is interrupted by accident, illness or injury, just as it did for my Mum when my grandmother was consumed by that most cruel of mental illnesses, dementia. Dementia eventually killed my Nan, just as I’m sure the strain of caring for her killed my beloved grandfather six months to the day before she died. The casualty list is even longer. Five years after my grandmother’s death, my mother is only just recovering physically and emotionally for this terrible period in her life.
By contrast, we were and are so very lucky. Boo’s challenges have been apparent from birth. They haven’t side-swiped us in quite the same way, although I still feel winded most of the time. For the moment, at least, and unlike so many other carers in the UK, we are able to spread the responsibility of our son’s care. My partner works; I recently (and with mixed emotions) returned to work. The two jobs enable us to pay for nursery for Boo for some of the week where others help us look after him. We are fortunate enough not to have to rely on carers’ allowance, although we know that might change.
The carer forms lay languishing for some time while I pondered what to do with them. And then my own mental and physical health began to deteriorate quite rapidly. In addition to the depression and anxiety occasioned by dealing with Boo’s medical problems, I was suffering from constant, severe headaches and extreme exhaustion caused by Boo’s acute insomnia and the relentlessness of daily therapies and multiple medical appointments every week (sometimes every day). My back was, and still is, suffering from the strain of lugging around a 10kg+ baby who doesn’t bear his own weight voluntarily or consistently. It’s getting worse with every week that goes by. Bathing him has turned into an Olympic sport.
Who was I kidding? We were and we are carers. And the point of self-identifying as such, I belatedly realised, was that we are mentally and physically vulnerable as a consequence. We needed to be red flagged. Because when carers aren’t looked after, the consequences can be devastating.
Carers may need economic or legal advice, or even just the anecdotal wisdom of someone who has been there and done that. A person, for example, who can suggest you might try to bath your baby by putting an inflatable high chair insert into a laundry basket in the tub to help your groaning spine. Carers may need emotional support to overcome the crippling isolation that living so selflessly and intensely can make them feel. Other carers badly need respite, to recharge their metaphorical batteries, to rekindle all those relationships (with their partners, their other children, their friends) that of necessity get neglected in the hectic lives they lead, to remind themselves that they are individuals who are not solely defined by their relations to others.
Carers, in short, need caring for. More than that, carers deserve to be cared for by the communities they serve through their voluntary and often invisible labour. This may seem obvious, but sadly it’s not obvious enough that this doesn’t need saying now. Repeatedly. And very, very loudly!
As I can’t say enough, I am lucky. I am currently able to work. And exhausting though combining my domestic and professional responsibilities can be, work offers me collegiality, respite, a break. My paid work can involve long and antisocial hours and many would describe it as stressful. Let me tell you: it is a complete doddle compared to the work of carer. Because caring is work that really matters, that makes a big difference to individuals and to society as a whole. The stakes are unimaginably high and the rewards, though many and various, sometimes cannot completely compensate for the price paid by those who do the caring.
So this week, please do spare some time to think about the role that carers play in our society. In my experience of meeting many parents of disabled children over the past 12 months, carers warrant our utmost compassion but won’t want our pity. What they deserve in return for their selflessness is a commitment from us all to find practical and sustainable solutions to funding the support and services they and those they care for require.