ROSEMARY KRATSCHMAR cares for her youngest child Sammy (16) who has Down Syndrome.
While Sammy’s medical needs have lessened in recent years, she says caring for someone with special needs is still incredibly stressful.
“I am one of the lucky ones. I have support – centre-based respite, my parents, my own siblings, my children, husband and good friends who help out and step in when needed, but it is still a very stressful and relentless situation on a day-to-day basis.”
Rosemary works part-time while Sammy attends Stewart’s Hospital in Palmerstown, Dublin but she cannot do this during the summer when Sammy is at home. “Over the years, from time to time, I have worked full-time but have always had to bow out after a couple of months as I could not get suitable minders for Sam,” she says.
Although he is very independent, he has a tendency to wander and must be watched at all times in case he leaves the house or decides to boil a kettle. He must be accompanied to various clubs and training sessions and she says she cannot decide on a whim to go out for a walk, or for a meal with her husband, unless she organises for someone to watch Sammy.
She hears carers talking of feeling trapped and of having an overwhelming fear that things will only get worse as the child gets older. “It doesn’t stop when he gets to 14 or 15. It doesn’t end.”
Sammy became eligible for a medical card when he turned 16, but she believes all children with a disability should have free healthcare. While he had a long-term illness card, every GP visit had to be paid for and she often visited Sammy’s GP five or six times a month when he was younger. “This is a burden for cash-strapped families.”
She says that the mental and physical toll on some carers is so severe that they simply cannot cope with their day-to-day tasks. “The system just wears you down and you stop asking for services – or you die first.”