Dawn Hart’s son, Ethan, had only been at home from hospital for six days when he stopped breathing. It was midnight on a Sunday and she was breastfeeding him in bed.
“I thought he had fallen asleep, then I realised there was no breath,” Hart says. “I looked at him and his lips were blue.”
As she called the ambulance, her husband Garry gave their son emergency resuscitation. “We were on our own for 15 minutes, and watched the light come and go from his eyes” she says. “Garry would say between breaths: ‘You’re staying with us, we are not giving up on you.’”
“Garry was right. We are not giving up and we never will,” says Dawn.
Ethan and his twin sister, Grace, are now five years old. Both were born with complex needs, and their parents have got used to life as carers.
Dawn, 43, a former journalist has left the life she had behind. She tries, when she can, to work a little – “mostly to remind myself of who I was”.
“I grieve for what I once had, and I grieve for the life I will never have,” she says. “But, for all the ups and downs, I can still see the beauty of this life when I wake my children in the morning.”
“Grace has the biggest smile,” Dawn says. “She’s happiest when she is at the park. She will spend all day on a swing if you let her. Ethan is happiest when he’s telling stories and creating imaginary worlds. He has an answer for everything, endless energy, and can talk you to death.”
The Harts are among the 6.5 million carers in Britain who are featured in a photography exhibition next week in the members lobby at the Scottish parliament.
The photos are taken by the renowned documentary photographer Chris Steele-Perkins, who has spent a large part of his career photographing people who are in, or are providing, care.
“Caring is an activity that usually goes on behind lace curtains and a front of stoicism,” he says. “I was conscious that caring situations are very rarely depicted. I had seen photographs of people smiling gamely for the camera, but few that considered the relationships involved.
“I want to document these issues because they are fundamentals of the kind of society we live in,” he adds.
The exhibition, This is Caring, is commissioned by Carers UK to celebrate 50 years of the charity.
It calculates that by 2037, there will be a 40% rise in full-time carers to 9 million, mainly because people are living longer. As a result, three in five of us, the charity suggests, will become carers at some point in our lives.
“We are at a tipping point,” says Heléna Herklots, chief executive of Carers UK. “We will soon see the number of people needing care outstrip the number of family members able to provide it.”
The 2011 census shows that women are more likely to be carers than men. Carers who are female make up 60% of those who care for 50 hours or more a week, while women account for 73% of people who receive Carer’s Allowance. So it is women who form the focus of the exhibition.
Caryl Kelly, 72, cares for her husband Tom, 80, who has dementia as well as diabetes and glaucoma. Pippa Clewer, 57, from Plymouth, cared full-time for her ageing parents for the last three years of their lives. Her father Ronald was 89 when he died, and mother Doris was 91. Steele-Perkins also photographed Jocelyn Prosser, 51, and her disabled daughter Amy, who has the genetic condition trichothiodystrophy. Jocelyn’s husband Darran also has to be cared for as he lost his left arm and leg in an industrial accident.
Talking about her husband, Caryl says: “There is so much people don’t understand about dementia. I think people tend to think you only lose your memory, but the impact is much, much greater. You really lose a person. When you grow older, one of the huge joys is to share memories. We can no longer do this. We can no longer share the joys of our grandchildren.”
When Steele-Perkins first met the couple in Cardiff, Caryl desperately wanted to keep Tom at home, but since then his dementia got worse, precipitating two spells in hospital, and then a nursing home. Caryl visits him twice a day. Although he does not recognise her or know her name, he refuses to let anyone else feed him or brush his teeth.
She describes herself as constantly fearful that they will not be able to afford the care home and that she will have to move Tom to a less expensive one. But she remains steadfast in her care for him.
“I still hope that he might improve and be able to come home – I know that is what he would want. I am so very sad that he is not here with me. I never thought that we would end our days like this.”
Clewer says that her mother was gravely ill when she first moved her into her house and didn’t get out of bed for four weeks. “She weighed five stone. We fed her home-made soup and, with proper care, she put on two stone. We got her and Dad well enough to be able to take them on days out. I remember the first time we were able to take them to the sea.
“I didn’t have to look after my parents,” she says, “I wanted to. That is a huge difference. The most important thing caring has taught me is that everything in life has a time and a season. Things change, but we can’t control when.”
Darren Chan, may have to get up 20 or 30 times during a single night to care for his disabled daughter. “Amélie is an absolute joy, but stress levels are through the roof. Amélie needs care 24 hours a day, and it’s impossible to get any respite because we can’t find medical professionals who have the sign language skills to communicate with her. And even if they existed, we couldn’t afford them,” says Chan.
As well as dealing with the physical strain of looking after his daughter, he is also having to deal with utilities companies chasing debt because he cannot afford to run the electrical equipment that keeps Amélie alive.
“Even if everything in the house is going well, there is still that financial worry hanging over us. I think people assume that there are loads of benefits supporting families like us. But that’s not the case at all,” says Chan.
The care provided by the UK’s carers, unpaid and often unaided, is worth around £119bn per year – more than the total annual cost of the NHS. Yet more than half of carers say that, over the coming year, they are worried about cuts to the care and support services.
Since the Harts’ children were born, Warwickshire county council has reduced its children’s services budget by £3m. Free school transport for children attending the local special needs nursery was cut, meaning parents with disabled children had to make their own arrangements to get them there. Then the council cut funding for treatment for sensory integration therapy, leaving parents to access the care privately, at a cost of hundreds of pounds per session. Last year, they lost their four hours of respite a month. “I had to become a quivering wreck before social services would offer me any sort of respite,” Dawn says. “I feel this government is doing its best to stop disabled children from accessing the best in care and education.
Clewer says the government needs to listen to carers. “As carers, we’ve been through the system and know what works and what doesn’t work. There is so much red tape that we often don’t get access to the support we need as carers,” she says.
Herklots says that at a time when carers have been given their strongest ever rights, the shortfall in adult social care budgets threatens to seriously undermine the positive changes these new rights can bring.
“This pressure on families is unsustainable; carers cannot continue to pick up the pieces of a care system in crisis.
“Greater investment is urgently needed if our ageing population is going to have the support and care we all want to see for ourselves and for our families in the future.”
This is Caring is in the members lobby at the Scottish parliament, Holyrood, Edinburgh from 31 August – 3 September and will be touring across the UK during 2015
This article was amended on 26 August to correct some personal details and to clarify a reference to school transport being cut.
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