Many groups in society experience marginalisation, neglect and dismissal. But what happens when the group being overlooked is busy caring for those in need? Single mothers and female carers are, according to the statistics, a group that provide most of the care in Ireland – yet there’s little awareness of what they do, and little funding to support it.
According to Central Statistics Office figures related to health, disability, and carers collected in the last Irish Census Of Population in 2016, six in 10, or roughly 60.5 per cent, of all carers were women. The same figures also show women are providing “almost two thirds (65.9 per cent) of all care hours”.
Even more startlingly, the National Women’s Council of Ireland contextualises the gender disparity in the distribution of care between men and women as meaning that “71 per cent of full-time carers between the ages of 25 and 29, almost 72 per cent in their 30s, and 68 per cent of carers in their 40s are women”.
Brenda O’Connell Barry, a carer from Cork who looks after her five-year-old son Fionn, is a prime example of this valiant, yet unsung, demographic. Fionn is a wheelchair user who has very complex medical needs and a life limiting illness. He is non-verbal, and completely dependent on Brenda and her husband Trevor.
It’s just something you do. You know you’re not going to be doing it forever, but you do give up something of yourself
Fionn has to be supported with all aspects of daily living including feeding, dressing and washing. “Twenty-four hours a day, seven days a week, he is all we think about”, O’Connell Barry says. “How can we help him, how can we provide him with the things that he needs that we aren’t getting from the HSE?”
Love for her family member is what keeps O’Connell Barry going. “That’s all that keeps you going – who else will do it if I don’t do it?”, she says, pondering what would happen to her son if something was to happen to her or her husband. Notwithstanding the crucial role O’Connell Barry plays in caring for her son, having her carer’s allowance slashed by almost half proves that it is often difficult to see light at the end of the tunnel.
And O’Connor Barry also suffers herself, from an illness called Systemic Lupus. Over the phone, I can hear the fatigue in her voice – you believe her when she says that she is “truly at burn out”.
O’Connor Barry also cared for her mother, who had cancer, until she passed away a year ago. This involved showering her in the house on a patio chair, applying for equipment and bringing her around the house on a computer chair because it had wheels on it.
O’Connell Barry isn’t the only carer I speak to, though – my own mother cared for my grandmother for the last seven years of her life, until she passed away in January of this year. My mother wanted to keep her in her own home so that she wouldn’t have to go to a nursing home – an experience she says was both rewarding and gruelling. Gran was mentally very alert, but with two hip breaks, several falls and deteriorating eyesight, she began to need more and more help.
We spend hours and hours advocating for our loved ones. Every day I’m ringing people, I’m sending emails, I’m writing letters
Attention was required at night-time and several times during the day. Like O’Connell Barry, though, my mother says that “it’s just something you do. You know you’re not going to be doing it forever, but you do give up something of yourself”. She says a lot of people aren’t aware of the work carers actually put in, and the physical and mental toll it can take on someone’s wellbeing.
When I ask what can be done to enhance the value placed on the work that family carers do, my mother and O’Connell Barry are in agreement: there is an imperative for political and economic awareness. For my mom, “some sort of people power is needed to make a change”. She adds that “the Irish as a nation are quite stoical and just put up with things, but in reality legislation would have to change to back carers more”. As a single mother, she says she felt isolated at times, and society seemed to take a step backwards when she needed its support most.
O’Connell Barry says, with a tone of quiet desperation, that “we spend hours and hours advocating for our loved ones. Every day I’m ringing people, I’m sending emails, I’m writing letters”.
She adds that “there’s a big misconception, you know – a lot of people don’t know there’s 18 to 24-month waiting lists for a wheelchair, for example, and that you’d have to purchase it if you didn’t want your child to be sitting in an uncomfortable chair for two years”. What this woman does on a day to day basis is purely out of love for her son, and she herself suffers for that love.
That’s all that keeps you going – who else will do it if I don’t do it?
She and her husband would do anything for Fionn, but the financial burden placed upon them when one has to drop out of the workforce is massive. And, in the process of supporting his needs, they’ve become like ships in the night – she says they barely see each other, let alone get to spend quality time together.
Carers, then, represent a demographic that’s massively overlooked in Irish society. Change, my mother and O’Connell Barry, needs to happen – and rapidly. And it starts with awareness. The unpaid work of women carers is not only discounted economically, it seems to be forgotten about by the powers that be.
Organisations like Family Carers Ireland, which came into existence in January 2016, do their best to advocate for proper funding and support for the care work that so many people around the country do. But, without a shift in societal and political attitudes, they face an uphill battle.
The health, wellbeing, and quality of life of family carers – and those for whom they care – is in danger. To counter this fact, empowerment and awareness is key, and it is of great importance that people and the state recognise that change needs to occur. Home carers deserve a break – and they need one from the government, badly.