A mother who is the full-time carer of her six-year-old son who is suffering from a rare genetic condition says she is “almost at burnout point” after months of pandemic-related disruption to support services.
Brenda O'Connell Barry, from Ballyhass, Co Cork is caring for her son Fionn, who isn't able to walk or talk and requires 24-hour care.
Speaking ahead of the start of National Carers Week on Monday, she says Fionn has been “struggling massively” over the last year with a change in his routine because of the Covid-19 crisis and has dropped to less than 13 kilograms (28 pounds) due to problems with his stomach.
Now "very weak" physically, Fionn is too high risk to go back to his special school in Charleville while respite services they were availing of at Cooleens House have been cancelled, Ms O'Connell Barry explains.
“Every single thing that Fionn needs, he has to have someone help him to do it. Unfortunately, due to his condition, he suffers a lot with cerebral agitation where he can just cry and cry for days,” she says.
“He gets a thing called autonomic storming where he can just be screaming and crying and and gets spasms in his back and limbs. He can suffer an awful lot at a time and it’s extremely distressing to watch, not to mind what he’s actually going through himself. It’s hardcore caring.”
Before the pandemic struck, Fionn had respite care, she says. “Every few months we would get two nights off, so that was wonderful, but that’s gone now since last January. It was a nice little reprieve, get the groceries done or whatever.
“It would just give you the chance to recharge your batteries, just a little bit, those two nights to breathe and not to be up at night worrying and caring and watching.”
She says she is seeking more homecare hours and for respite to return while she has received some support from Family Carers Ireland, which provided Fionn with a special bath to help ease his symptoms.
“The last year has been so stressful, isolating and frustrating . . . Things were bad before Covid but so much worse now with Covid . . . there’s no one available to answer questions about resources because they’ve been redeployed due to Covid.”
Ms O’Connell Barry, who suffers from lupus, says: “I am almost at burnout point. I’m very, very tired. I’m exhausted emotionally and physically. I was crying all day yesterday, I’m crying a lot now. It just gets to a point, as a carer, you’re working 24 hours a day, we’re not getting any rest, any break.
“We just need to sleep, we need support and it can be hard to get that from the people who have the funding, the HSE, to give it to us.
“I’m performing and every family carer, we’re all performing nursing and medical interventions on our kids here at home. It’s hard work and we need more support, we need to be listened to before we come to breaking point.”
The HSE Cork Kerry Community Healthcare group said one of the many impacts of Covid-19 on health services was the reduction of respite services, “and we are aware of the impact this has had on families”.
“We are working very closely with St Joseph’s Foundation on the resumption of respite services at Cooleens House, and this will be done as soon as possible,” a spokeswoman said.
“In the meantime, we are also working with St Joseph’s Foundation to make sure that additional and alternative supports are put in place for families most in need.”
Family Carers Ireland has launched a national fundraising drive online for National Carers Week, which is taking place between June 7th and 13th.