Such was the predicament of Cork-based Mary McDonnell, one of the carers featured on Prime Time last week, who was frightened at the prospect of her 54-year-old daughter being alone in an uncaring world.
Sinead, who had cerebral palsy and scoliosis and couldn’t do anything for herself, died some time after the depressing but insightful programme was made.
It was a relief for her mother whose own health is failing. She pleaded with the HSE to wake-up, to get back its humanity, to realise that people with disabilities have needs and feelings.
Who would be a carer, where any bit of assistance provided is very much a postcode lottery, dependent on where you live? And even at that, services are sorely lacking.
It’s too easy to smile benignly at carers and tell them they’re living saints. They’re not.
Johanne Powell, who expressed the hope that her daughter, Siobhan, will die before she does, stressed that she doesn’t want people to feel sorry for her.
Rather, she would prefer if people got angry on her behalf and that of her daughter, who is doubly incontinent, has no language and deformed hands.
Johanne said that her daughter shouldn’t be regarded as her appendage. Siobhan should have rights. But as things stand, she is “an anchor around my neck”, said Johanne, admitting that it wasn’t an easy thing to say.
She also said that being a carer doesn’t make her special. She is doing it because she has to.
Politicians tell her and others in similar situations how wonderful they are. But that’s a cop-out, a way of ignoring the needs of carers, putting them on a pedestal, instead of responding to the requirement for decent respite care and homes in the community for adults with disabilities.
It’s not that parents who are carers of offspring with special needs don’t love their children. It was clear from the interviews with the parents that they are full of love and concern for their dependent children.
After listing everything that is wrong with her daughter, Johanne pointed out that “that’s not Siobhan”.
She credited her daughter with very good humour who likes to play with the household dogs.
“She’s a mixture of everything, like all of us,” said Johanne. But this over-burdened woman would like to have her own life back.
There are more than 200,000 family carers in Ireland. One in 20 people is a carer and by 2030, it’s predicted that one in five people will be a carer.
This year was supposed to be the year of the carer. A campaign launched early this year, Share the Care, called on the State to provide adequate support to family carers in recognition of the vital role they play in Irish society.
Family Carers Ireland, the group behind the campaign, pointed out that caring can have an extremely negative impact on the carer’s mental health. There is a need for respite from the caring role.
Not only is the carer’s mental health at risk but in some cases, physical violence is the reality of their lives.
Jacinta Walsh, whose adult son, Sam, was diagnosed with severe autism at the age of three, was shown on the programme with bruises on her face.
Sam, who lives in the Louth area, has no access to adult care. Because of extreme sensory overload, he is prone to violent outbursts.
Once, in McDonalds, he put his foot through a glass window. Another time, he head-butted his mother for more than 20 minutes. Social workers have said that Sam is a risk to his family, particularly to his loving and patient mother. And the risk could be fatal.
Jacinta feels “very sad sometimes. It’s the relentlessness of it. It never ends.” She says that if respite care was provided, she could carry on. But as things stand, “there’s no break on the horizon... that’s really hard.”
Clearly, carers are in crisis. In 2008, the government agreed to more home care than was available in 2015. Cuts to respite care and residential care mean that families are shouldering most of the burden by themselves.
One man in the post-documentary discussion on Prime Time, revealed that his wife gets a miserable €8 per week as a carer’s allowance. That’s because he took on extra work to provide for his family, resulting in his wife’s former allowance of more than €200 per week being slashed to virtually nothing.
Finian McGrath, minister of state with responsibility for people with disabilities, says his objective is a plan for every child, from cradle to adulthood.
Could he make 2018 the year that carers are given dignity?