Family carers ‘abandoned in a broken system’

It’s over 12 years since Ireland’s National Carers’ Strategy was first launched by Government to support those who care for older people, children and adults with an illness or disability. In that time though, a huge amount has changed.

Back in 2012, just over 187,000 people in the country identified as carers. However, by 2023, that figure had more than doubled. It now stands at over 500,000, according to Family Carers Ireland, the national charity that supports carers and advocates for better services for those in need of care.

The strategy, which aims to support people to live in dignity and independence in their own homes and communities for as long as possible, was meant to be refreshed during the lifetime of the current Government.

However, a State of Caring 2024 report published by Family Carers Ireland this week outlines a deteriorating situation for carers across the country.

Of the 2,127 family carers surveyed, 74% reported insufficient support from formal agencies in the care of their loved ones. Furthermore, the number of people who have never accessed respite care has risen from 66% in 2022 to 72% this year.

Catherine Cox, Head of Communications and Policy at Family Carers Ireland, says despite promises of reform, family carers have been ‘abandoned in a broken system’.

“This report paints a bleak reality, echoing the persistent struggles highlighted for many years and emphasising the urgent need for a transformative approach to supporting family carers and providing them with the recognition, resources and respect they deserve,” she says.

“We are calling for immediate action to relieve the burdens experienced by family carers across Ireland. Urgent measures such as the abolition of the means test for Carer’s Allowance and eliminating the postcode lottery of supports and services that exists, through the full implementation of the Carers’ Guarantee promised in the Programme for Government are vital steps to ensuring the sustainability of care in the home.”

A statement issued by Minister of State for Disability Anne Rabbitte on Tuesday said a respite investment plan would be published in the coming weeks. This will detail how funding of €15 million awarded this year to expand respite provision, is being spent.

National Carer of the Year award

One family, who are feeling the impacts of caring for their loved ones are the Timothys from Newcastle, Galway.

Better known as 'Farmer Michael' to a growing audience on social media, Stevo Timothy’s private life is a far cry from his rambunctious comedy alter ego.

Stevo, 42, shares the care for his father Noel, who suffers from Parkinson’s. In his younger years, Noel was a former winner of the National Carer of the Year award which he received in 2008 for caring for his late wife Evelyn and Stevo’s brother Jamie, 31, who has a learning disability.

The comic and actor shot to fame in recent years with his sketches on TikTok and YouTube featuring Farmer Michael and his long-suffering wife Kathleen, amassing millions of views and a huge social media following.

However, away from the cameras, Stevo shares the care of Noel and Jamie with their youngest brother Ronan, who lives in the family home. This is despite the fact that Stevo has limited movement from the waist down, after suffering incomplete paraplegia in a motorcycle accident in 2005.

Stevo was drunk at the time of the incident and was convicted of dangerous driving causing the death of his friend. The judge suspended a two-year custodial sentence, deciding the extent of his injuries would be a more visible deterrent to drink driving.

“After my accident, Dad took on my care even though he was also caring for my mother Evelyn who had early onset dementia and didn’t know who I was when I came out of hospital. Caring for Mam and Jamie and then to have to take me on was a big deal, but Dad never made it into one. He just got on with it. It was a very slow process for me to regain any kind of movement, and Dad was there for me through it all. So, when he was diagnosed with Parkinson’s six or seven years ago, I knew it was time to give back,” he says.

Ronan, 26, is his dad and brother’s primary carer but Stevo steps in four days a week to give him a break.“I live next door to the family home so I’m there on Monday, Wednesday, Thursday and Friday and my older brother John helps out at the weekends. Our sister Evelyn lives in Pasadena, California but comes home as often as she can and when she’s here, she does everything.”

Mental load

“There are certain things I can’t do because of my disability but I make sure Dad and Jamie are fed and watered and I sit and watch TV with Dad because he always needs someone with him. The night-time carers are responsible for his personal care and get him ready for bed but I make sure he’s settled and Ronan is there in the morning.”

Stevo’s role intensified last year when Ronan had to spend time in hospital due to illness.“There was a period of nine weeks where Ronan was away getting better and it was full-time care, which was really intense.

“The mental load of caring for your dad and brother is very heavy, especially when your friends are off travelling and having nights out together. It was no wonder Ronan needed a break. Even when I’m the one caring for Dad, he will ask for Ronan as that’s who is with him full-time, but Jamie is a great help and loves doing little jobs that make things that bit easier. Our neighbours are very good and offer to get shopping or call to see if we need a hand,” says Stevo.

“At one point during that time, Dad fell in his bedroom and was stuck between his bed and the wall. I had no option but to ring the Fire Brigade to come to help us as I couldn’t get to him, nevermind lift him. But they did come and they were fantastic.”

Noel has gone from being the rock of the family to being its most vulnerable member. “For so long, he was the one responsible for everyone. Now, he is utterly dependent and vulnerable so it’s very hard for him,” says Stevo, sighing.

“He gets restless and agitated at times, the disease has stolen so much from him.”

Carer support

The family have the support of carers calling to the home three times a day but Stevo said it has been a battle to get the help they need. “At one point they took the night carer away from us and we had to fight for those hours to be restored – it happened evantually but it was a very frustrating time,” he says.

“More respite would be a huge help as it’s only then that Ronan gets a proper break. I take over when I’m here but Dad still looks for him, which is hard on everyone.

“We know that respite works as we were able to get a two-week stay in Merlin earlier this year which was great. We were hesitant to go down that road as a previous hospital stay had been very traumatic on Dad. However, once he settled in Merlin, he ended up loving it and it gave Ronan the break he needed.

“I’m supposed to be going on a short tour of the UK with my comedy show in the summer so we’re hoping we’ll secure another respite bed in Merlin that will ease the burden on Ronan.”

Stevo says the family will never consider residential care for their father because of how he cared for them through the years.

“To put him in a home would feel like we had failed to take care of our own and seeing him manage our mother’s care up until she passed away, at home, means it will never be a consideration for us,” says Stevo.

“If I can be a tenth of the man, he has been throughout his life I’ll be doing very well.”

• The HSE offer Home Support Services for older people (subject to availability and funding) aimed at supporting people to remain in their own homes for as long as possible and to support their informal (family) carers

• Family Carers Ireland’s State of Caring 2024 report estimates that carers save the State €20 billion each year. The report also found that 76% of carers report severe or moderate loneliness

• The charity’s National Freephone Careline (1800 240724) operates from 9am to 5.30pm Monday to Thursday and 9am to 5pm on Friday. The Samaritans (free call 116123) take calls from family carers who wish to speak to someone out of hours

•There are 500,000 plus family carers in Ireland

•Family Carers Ireland estimate that 19m is the number of unpaid hours per week provided by carers

•Check out familycarers.ie