We need support not praise, says frustrated mother and carer

Lynsey O'Donovan and her son Jack, whom she cares for 24/7. Picture: Moya Nolan

A mother and full-time carer to a 20-year-old with severe cerebral palsy has urged those in Government to walk in her shoes for half a day, saying that supports for family carers would be transformed if they did so.

Lynsey O’Donovan, whose son Jack is non-verbal, tube-fed, and has epilepsy, said he requires 24/7 care and must be turned 10 times each night while he sleeps.

“If you asked anybody, would they willingly do this and get paid what we get paid, knowing you have to do this for the rest of your entire life, I don’t think there are many people that would do it,” she said.

She receives nine hours of support from the HSE each week, saying: “We've never been given any more or offered any more, and we are always told these could be taken off us.” 

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The hours provided allow Ms O’Donovan to spend time with her three other children. But for six months last year, she went without the nine hours due to staff shortages — just one of her many battles, she said.

Ms O’Donovan said that State-provided supports must be improved, adding that praise for family carers from the Government is not enough.

“We don't need that, we’re all caring for people that we love, and none of us are going to stop,” she said.

She has never had an overnight respite since Jack was born, as there are no suitable respite beds available.

Ms O’Donovan said 20 days of respite care each year would make a “massive difference”.

“People like myself who are long-term caring need a break," she said. 

"If you were really hard done by, you could maybe get a respite bed in a nursing home, but for a 20-year-old, it’s not suitable.” 

Lynsey O'Donovan: 'We’re all caring for people that we love, and none of us are going to stop.' Picture: Moya Nolan

Ms O’Donovan said the cost-of-living crisis has further compounded her situation, with a gas bill of €1,700 arriving after Christmas, which she is still paying off.

Due to several of Jack’s respiratory problems, constant heating is a must, while the electricity costs are “through the roof” due to his bed, chair, nebuliser, and a device that he talks through, all being plugged in.

Despite these extra costs, the family receives just €30 each month in credit towards electricity as part of a carers package.

“If I left Jack outside the hospital tomorrow and said that I can't mind him anymore, and if everyone else did the same, how much would it cost the Government to pick up the pieces?” she said. 

I think things haven’t moved on so much because everybody knows we're going to keep doing it.” 

Ms O’Donovan hopes the Government will look into providing extra respite beds and abolish the means-testing of the carers' allowance.

“For people who are in positions to make these decisions, if they just went and spent half a day with someone who does what I do, it might open their eyes a little bit more to how hard it is,” she said.

Family Carers Ireland head of communications and policy Catherine Cox said the Government should utilise some of the “super surplus” in the State’s finances to initiate the changes, because carers are "terrified of what the future holds”.

“Family carers, who save the public purse billions of euros a year, are being expected to quietly prop up our health system with little to no support,” she said. 

"Instead, they are pushed to their limits by relentless caregiving responsibilities, scarce opportunities for respite, and inadequate and patchy support and services."