Jen Corrigan is 37 years of age. She lives in full-time residential care in an attended house attached to Cheeverstown House in Dublin 6W, and requires an aide at all times. She has severe cerebral palsy and is consigned to her wheelchair.
Jen is mostly non-verbal although her family can understand her, if she speaks slowly enough. She needs assistance to attend the toilet, to get a drink, to have food, to be taken out of bed – for everything.
She has two siblings, Niamh and Edward. Niamh, who turns 40 this month, lives with her parents and Jen comes home very second weekend.
Niamh knows only life with Jen. Everything the family has done has revolved around Jen. It is a silent weight that never shifts. As Niamh celebrates her 40th birthday, she knows that Jen may well be part of her life for the next 40 years. It is hard to explain this weight to anyone outside the family.
Niamh has witnessed her parents’ struggle through Jen’s life. Until Jen was 17 they received virtually no help. “Mum and Dad had to fight tooth and nail for every single thing. I don’t understand why the system washes their hands of us. If Jen had cancer we would not have to beg for everything. It would be given to us without this constant battle. It is as if we are pariahs or something.”
Schooling supports
Once Jen became an adult, the schooling supports were gone and the Corrigans feared they would be left to their own devices.
“Mum and Dad gave the health board an ultimatum,” says Niamh. “They needed a full-time package for Jen. They knew that if they did not get it, the responsibility would always be ours, and in time [would] fall to my brother and me.”
“Even with the full-time residential care it is still our responsibility. When Jen is home everything has to be done to suit her. Dad makes her smoothies; Edward and I plan events. But mostly she wants to be with Mum. Mum cannot move without Jen going with her.”
Niamh loves her sister dearly, but she does not view her as a blessing. “It is a curse,” she says. “If we didn’t love her it might be easier. Or if my life was minding her, maybe that might work. But while I love her, I also resent her and I get angry on her account.
“I will fight like a tigress for Jen when Mum and Dad can no longer do it. Sometimes though, I worry if Jen will be penalised for my fighting. That is what makes it so hard.
“The system says you were dealt that hand and now you may just cope with it. How is that fair?”
