Ann Mulligan describes her day as a carer to Kitty Holland. She looks after her son Robert who is unable to do anything for himself
Watching an interview on The Late, Late Show some years ago was, for Ann Mulligan, "like a knife going through" her.
John O'Shea, director of the charity Goal, was recounting how he had found a young mentally handicapped boy being kept in a chicken coop in an African town.
"Pat Kenny said that if the boy had been in this country, he'd get the best of care. It was like a knife going through me I was so angry," says Ann. "Robert has been fighting since the day he was born. I have been fighting - for adequate care, never mind the best."
Ann's son Robert (22) suffers from severe cerebral palsy and lives at home with his mum in Lucan, Co Dublin. Ann, separated from Robert's father, is a qualified dress designer. She has, however, given up her career to care for Robert. He is the centre of her life, in part because she has no hope of building a life outside their home.
She is taking her health board - the South Western Area Board - to the High Court in an effort to compel it to provide 24-hour nursing care for Robert at home.
As well as cerebral palsy, he has epilepsy, scoliosis and the jaundice-like condition Gilbert's Syndrome. His airways need to be suctioned at least once, often two or three times, a day. Suffering with constipation, he needs an enema daily. His sleep is erratic.
He wakes at night, usually every few hours and never sleeps for more than six hours. He also suffers with cold night sweats and, says Ann, this often means the sheets are saturated and must be totally changed during the night.
"He can do nothing for himself and uses his eyes to communicate. He stays in bed most of the time and likes listening to the radio. Joe Duffy, that's his favourite, and he watches television in his room."
Their day starts mid-morning after a much-interrupted sleep. Ann gets him breakfast and a public health nurse calls every day at about 11 a.m. to help wash and dress Robert.
"It can happen that we need to change the sheets during the day. He has to be given his drugs, suppositories, oxygen and then spoon fed some lunch.
"I usually go and collapse at about 5 o'clock. At about seven he gets more drugs. At about nine he is changed and gets some food and drugs and more drugs then at 11 p.m. and at midnight."
Apart from some family help and the daily hour-long visit by a public health nurse, Ann is Robert's only carer.
Although the South Western Area Health Board has provided some care in the past, it has, says Ann, always been only as a result of exhausting battles. She wants 24-hour care at home for Robert and is preparing to have her case heard before the High Court. There have been agency carers, some more successful than others.
"I have been offered 34 hours a week of assisted care, but nothing has come of that. There have been battles and struggles and it's like a game of cat and mouse, waiting for me to collapse."
Asked whether she has been able to have a relationship since splitting up with Robert's father, Ann almost smiles at how preposterous an idea that would be.
"I don't really have a social life. I telephone friends. I used to have these girls' nights but I was just too exhausted. I was supposed to go out at Christmas, but Robert was too sick."
The health board, which has resisted 24-hour home care, commissioned a rehabilitative medicine consultant to report on its behalf, as to Robert's needs.
Noting his total dependence on others to be dressed, fed, washed and toileted, the consultant writes that Ann and he are "trying to survive". Ann has developed health problems, she continues, and "has no possible outlets for her own interests or activities".
"Unfortunately, if his current care situation continues, then he will continue to deteriorate in a downward spiral of health. Essentially his mother is too tired and becoming unwell to continue to provide him with the care he needs. I would recommend 24-hour care be supplied by the health board," she concludes and that this be provided in his home, with his mum as he "would not be without his mother".
Ann passionately wants her son to stay at home "so he can live his life to the full. I want him to stop being hurt, stop being ignored and stop being abused."