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The Secret Carer
Features Writer
9:04 AM 23rd March 2020
Opinion

Coronavirus: Welcome To The World Of Carers…everyone

Covid19 has unexpectedly made carers of entire communities, and complete strangers are offering to provide care and support for the most vulnerable during this time of need. What interests me is what exactly has spurred this voluntary movement into action and will this new ethos of caring continue after the crisis is over?

When my son’s consultant geneticist gave us his long-awaited diagnosis, which turned out to be ‘de novo’ – a random mutation – which could have happened to anyone, he said it was just extreme bad luck. This rare mutation included uncontrollable complex epilepsy, moderate to severe learning disability, autistic traits, sensory difficulties and extreme anxiety to mention just a few – yes, that was bad luck all right.

We had waited 11 years for this diagnosis, so I had already resigned myself to the likelihood of a lifetime of caring ahead. Gone was my well-established career as a researcher and future trips around the world. My hopes and dreams for my son’s future had imperceptibly faded during those long years of waiting for this very moment, so that when we were handed the diagnosis, we didn’t fall apart as I had imagined, but were thankful that we finally knew what we were dealing with. At our most vulnerable and fearful for our son’s future, we joined a small group of dedicated families around the world with the same diagnosis; we understood and could support each other practically and emotionally and within this group we gave each other the strength to fight on.

Along the way people told us, “You are amazing parents and I don’t know how you do it.” My reply has always been, “We had no choice,” and, “We are doing the best we can under the circumstances.” Few choose to be full-time carers, though there are some amazing people out there who do make the decision to devote their whole life to caring. They foster and adopt difficult children in desperate need and make what I would regard as the ultimate sacrifice.

We are now as a nation moving into the unknown with the COVID-19 virus and what interests me is the number of people who are assuming the role of a carer in order to protect and, even more importantly, save the lives of the elderly and most vulnerable. These people are often strangers to each other, but they have chosen to put their own health and possibly even their life at risk to do so.

Individuals are forming local groups in their communities and across social media to help the elderly and most vulnerable. They are posting cards such as the one below through doors offering practical help, such as shopping, and, in this time of isolation and loneliness, something anyone can provide by picking up a telephone: friendship.

Cards like this are being posted through doors offering practical help
Cards like this are being posted through doors offering practical help

You may feel that you are not providing the same level of support to your community as others, but simply staying at home and not spreading the virus is an equally valuable contribution. Accept the help from those who are currently willing to give it, as you may have to reciprocate at a later date.

I am particularly proud of a group called NYPACT (a Facebook group for parents and carers of children with special educational needs and disabilities in North Yorkshire) who very quickly recognised there was a desperate need to provide all manner of support and immediately offered their help to other families, despite having challenging and vulnerable children themselves. They are in the unique position of personally knowing what it is like not always being able to cope and therefore understanding how to provide the care and support that others need. They are an amazing group of people all supporting one another.

So I wonder whether when a family, community, group or society as a whole is threatened, people tend naturally to come together to support each other. Perhaps it is part of the evolutionary process and we survive because by working together we are stronger and more powerful in times of need. It is ironic therefore that the way to stop this virus is to isolate from one another, despite humanity’s inherent personal and societal need to do the opposite.

At the end of this crisis, when you all return to your former lives and we function once again as a nation, those of you who have made a difference should feel justly proud of your selfless sacrifice. You have also been given a unique perspective into the world of the carer, if only for a short period of time.

Unfortunately for the majority of carers we are in it for the long haul. We didn’t choose the path we are taking and cannot walk away from it. Each day we struggle to do the best that we can, often at the expense of our own physical and mental health. Our loved ones may never have the opportunity to lead a normal life, unlike most people after the worst of the virus has passed, and we will still be desperately needing your help. When the Coronavirus has finally been contained, Social Care will still be underfunded, in crisis and struggling to provide even the most basic needs. Please don’t forget that we are here.

Who is considered a carer? - “A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.” Definition given by NHS England.