‘We have more than enough stress in our lives’

Sam Norris only turns 15 next week but already he has big responsibilities. He helps his mother Antoinette in caring for two siblings, one of whom has Cohen’s Syndrome, a disorder that leaves grown-ups in a child-like state.

“Sam is always late for school because he’s helping me. Or he’d be out playing soccer and I’d have to call him in to give me a hand,” explains his mother, sitting across from the teenager in a Dublin hotel this week.

“Last week, he asked me for a fiver for the cinema but it was either that or come here today.”

Sam tells her to hush; he wasn’t that bothered about the film anyway.

“After this we are going to go to Starbucks and then go home,” she continues. “I thought we’d have a bit of a day out.”

The mother-and-son team were attending the launch of a new video from the Carers Association highlighting the effect of budget cutbacks on the sector. On the same day that insolvency guidelines were issued stating that anyone in financial crisis should have some disposable income (at least €28.97 a week) to guarantee "social inclusion", Antoinette , Sam and other carers testified to increased social exclusion.

The abolition of the mobility allowance, increased prescription charges, slashing of homehelp hours, reduced phone and electricity allowances and above all the 20 per cent cut in the respite care grant in Budget 2013 are collectively taking their toll. Right now, subsistence is the aim.

As for a social life?

Austerity-stricken Ireland
"I don

’t drink, I don’t go out,” replies Antoinette who has lost €650 a year from her respite grant. “I have never heard of a carer who has used it [the grant] to pay for a break. It’s just spent on essentials. At Christmas I start shopping for next Christmas because I couldn’t afford it otherwise.”

On paper, this might sound like just another moan from austerity-stricken Ireland. But Antoinette, originally from Limerick and now living in Finglas, speaks with real enthusiasm about her role as a carer. She’s simply explaining it as it is.

“It’s 24-hour madness in our house,” She laughs. Her seven-year-old son Adam is autistic, but it’s 16-year-old Demi who is the centre of attention. “She is so lovable. She is such a great kid but she has no speech and you have to keep on top of her toilet training as well. She has been trained nearly a year-and-a-half but she is still a bit lazy.”

Another aspect of Cohen’s Syndrome is overeating.

“We have to be in the kitchen all the time to check she’s not stealing food. You could hide a sandwich anywhere in the house and she would sniff it out.”

The other carers featured in the short campaign video, entitled Give Carers a Break , share no sense of bitterness about the cards they've been dealt. But they do fear for the future.

"I wouldn't change it for the world, I don't think many carers would. But a little bit of help would make it a whole lot easier," says Carolyn Akintola (48).

‘I can’t get care for mum’

She provides full-time care to her mother Elsie (75), a wheelchair user who has Parkinson’s, kidney failure and diverticular disease. Carolyn herself uses a wheelchair as she has Ehlers-Danlos syndrome, a collagen defect.

“My big concern is what will happen to mum if I can’t look after her? For example, I need my right knee replaced but I can’t see myself being able to do it because I can’t get care for mum. None of the nursing homes will take her.”

The Tallaght woman gets three hours home help a week, and another three hours charity respite. Because her mother needs dialysis three times a day she is practically housebound. “If you do decide to go out you have to take about three kilos [of fluids and equipment] with you.”

To get by, she draws a myriad of resources from St Vincent de Paul to her own good humour. Spotting her local Carers Association rep Kathy White at the reception, she says "poor Kathy must have the soggiest shoulder in Dublin because I've cried on it so much".

Her daily routine is poignantly captured in the video which also features Margaret Whyte from Clondalkin, who cares for her son Ronan (36) who has Ehlers-Danlos syndrome too, as well as being autistic.

“I wish I could get it across . . . Carers are not a cost to Irish society. We are not even cost-neutral. We are saving the State well over €2.5 billion a year,” says Carolyn.

“You are seeing carers just being ground down,” she tells me. “You know . . . you put your notebook away and you have a life. Carers’ lives are just wrapped around the person they’re caring for all of the time. And I don’t think carers have an objection to that but we would just like a bit of help to do it, and not to have increasing anxiety put upon us with cuts and services withdrawn. We have more than enough stress in our lives.”

She rocks back in her chair. “I mean if stress burned calories I’d be a flipping supermodel.”

The Give Carers a Break video can be viewed at: carersireland.com