The work that carers do is often hidden away and poorly understood by many of us so in January Don’t Buy Her Flowers launched a campaign in collaboration with Nursem Skincare. Our hope for the campaign was that we could show our appreciation for the work that carers – paid and unpaid – do, but also that it would make unpaid carers, and the challenges they face, a bit more visible.
6.5 million people are currently classed as carers in the UK and we were stunned when we discovered that two-thirds of UK adults can expect to care – unpaid – for a loved one in their lifetime. Being a carer means that you provide unpaid care for ill, older or disabled family members or friends. It could be a few hours a week, but for many it means round the clock care.
With the help of Penny Wincer, author of ‘Tender: the imperfect art of caring’ (published June 2020) – who has twice been a carer: first to her mother and now as a single mother to her autistic son – we were able to get in touch with four adult carers across a spectrum of caring experiences. We wanted to amplify their voices, and to start to educate the many of us who have no experience of their world.
Amy @solovelysosimple became a carer overnight in 2013 when, ‘my then boyfriend of a year suffered a massive bleed on the brain.’ Amy and Will have since got married and their son, Reggie, is now 2 years old. Although Will’s condition has improved immensely, Amy explained how every day she feels ‘the immense pressure of being the bread-winner, the primary care-giver to our son, and of having most of our life admin falling at my feet’. In a vulnerable and honest post, Amy shared how deeply she loves Will and Reggie, but that alongside that love are feelings of anger at the unfairness, ‘One of the hardest things about being a carer is watching everyone else around you move on and achieve, while you are stuck in a daily struggle to make it to the end of the day.’
Although the carers we spoke to were facing different challenges, three of the carers shared an involvement in work and campaigns to address lack of understanding and inequalities in our wider society. Their work exposes that society at large needs be more compassionate and inclusive.
In 2018 Laura Rutherford @brodymeandgdd successfully campaigned for Tesco’s to stock larger – Junior – sized nappies. She now campaigns and works for the charity PAMIS who co-chair the Changing Places toilet consortium. She is also mum to Syd, and Brody who has GDD (Global Developmental Delay). She told us that, ‘hundreds of thousands of people are forced to change their loved ones in unsafe, unhygienic and undignified places, like toilet floors or car boots. It’s that or face isolation from our local community and society.’ What Changing Places is campaigning for is access in all public places to a 12m2 room with a centrally-placed toilet, height-adjustable, adult sized changing bench, and a ceiling track hoist. ‘I need everyone to know that in 2020, disabled people, their carers and families are denied the basic human right of going to the toilet.’
Like most of us, Emma @campaignformybrain never expected to become an unpaid carer. That all changed when she was a teenager and her mum, Jenny, was diagnosed with a fatal genetic disorder, Huntington’s Disease, ‘My mum developed cognitive impairment, and psychiatric and personality changes. She also started struggling with balance and fine motor skills.’ Jenny is now in an advanced stage of Huntingdon’s and Emma is her full time carer. She faces constant battles with services to prove that her mum is terminally ill, with a degenerative condition and will never recover. Emma campaigns for greater understanding for people with neurological conditions and injuries and has co-created a petition to end benefits assessments for people with degenerative illnesses. To date, the petition has secured over 350,000 signatures thanks to the efforts of Emma and others to amplify the cause, but she also shared with us a quieter, more vulnerable truth about her experience of being a carer:
‘You are constantly torn between a resentment for your restrictions and exhaustion, but also an overwhelming grief and guilt for your loved one. It is a very isolating role, and no one truly understands unless they have been there themselves.’
Perhaps unsurprisingly, physical and mental health issues amongst carers are common. 80% of carers say they have felt lonely or socially isolated as a result of their caring responsibility. One isolating factor for carers and their families, was highlighted by Vicki from @harddaysout. For the last nine years, she has ‘been navigating life with a child who was diagnosed with autism aged 4’ and she has been confronted by the number of services, businesses, venues and attractions that are inaccessible to individuals and families with additional needs and disabilities. In response, Vicki set up an Inclusion and Disability Consultancy: Hard Days Out Made Easy. Vicki now works with businesses to promote better understanding and knowledge of inclusion and disability. She also encourages us all to, ‘support the carers in our communities and enable them to feel our empathy and understanding as they go about their day facing the many challenges additional needs can bring to their lives.’
Speaking to Amy, Laura, Emma and Vicki opened our eyes to challenges that we have never had to consider, and we know that we have not even scratched the surface. Every day unpaid carers are providing support and care for their loved ones. We know many reject the ‘superhero’ and ‘inspirational’ tags – as Laura Moore said in a comment on one Instagram post, ‘we all do whatever we can for the people we love’ – but what they are doing is incredibly hard.
These families are full of love and happiness and they don’t want anyone’s sympathy. But something that could make all of their lives – and the lives of countless families up and down the country – easier, is if we were all more empathetic. Compassion, support, understanding, access, hygiene, inclusion – these are the things carers, and the people they care for, want and we’re sure you’ll agree, it’s what they deserve.
Steph and the Don’t Buy Her Flowers Team would like to extend our thanks to Carers UK, Amy, Laura, Emma and Vicki for being so open in sharing their insights, and to Penny Wincer for helping us with achieving the right tone and approach to such an important and sensitive issue. Thanks to every one of you who nominated a carer – paid or unpaid – in the giveaways. Your words sang with respect, love and appreciation for them and the work they do. And of course, thank you to all of the carers who make the world go round. With all our warmth and love, from the DBHF Team.