'Impossible to explain how hard it is': Carer mother weary with lack of support

A CORK carer has said she is “weary, angry and tired” about a lack of supports for her son, as new report reveals 74% of family carers feel their loved ones do not receive sufficient formal support.

The report from Family Carers Ireland shows that those who have never accessed respite care rose from 66% in 2022 to 72% this year.

Catherine Dineen, who cares for her son Joey, told The Echo: “Joey is in his 30s and he’s a member of the autistic community.

“My husband Dennis was diagnosed with Parkinsons at 50, then died in a car crash at 60.

“When he died, I looked for supports and I didn’t get them — I was told that I ‘needed to realise that the main carer hadn’t died’.”

That was six years ago, and she has been fighting for services since: “I’ve come to stage now where I’m weary and I’m angry — I’m tired of the continuous institutional thinking and behaviour. During covid, not one ounce of help was given to us for months,” she said.

“We finally got a little bit of help, but in July 2022, Joey lost his respite due to a HSE emergency. We were told it would be a few weeks, but it has now been 23 months and Joey has lost approximately 70 nights of respite,” she said.

Ms Dineen added that Joey has only gotten three nights over the last three months. “My understanding is that the funding for Joey’s respite has been reconfigured for residential support, there is no sign of Joey getting back his respite the way he had it before, and that has added another layer of grief for him.

“He loved his respite, he got away from his mother, he was with friends and they did fun stuff, none of that happens now —the staff can’t facilitate doing stuff that he enjoyed anymore.”

Ms Dineen also praised the people of Coachford who “have been absolutely brilliant to help” and Joey particularly enjoys bingo in Paddy Macs pub and going to Cork city matches.

“From my perspective, the continuous emails to Ministers, TDs, councillors, the HSE all come back with more or less the same response — they’re looking into it, but you get nothing.”

The report from Family Carers Ireland also highlighted financial barriers, with 69% finding it difficult to make ends meet and 29% of those cutting back on essentials like food and heat, with some reporting having to rely on food banks and charities. 49% have paid privately for products or services that should be publicly provided to support their caring role, 23% missed at least one mortgage or rent payment over the past year, and 34% said their accommodation is not suitable to meet the needs of the person they care for.

Ms Dineen said that there was a significant financial burden, as caring for Joey without services meant paying for physios, chiropractors, transport, his diet, hot water for long nightly baths and boosters for the internet connection which is bad in their area and “can be incredibly difficult for him when it freezes.”

She added: “Just maintaining the house — I’m on a widows pension, half a carer’s allowance and he’s on disability, it’s impossible to explain how hard it is trying to maintain living conditions for him at home without supports.”

A spokesperson from the HSE said it cannot comment on individual cases. However, they added: “We sincerely apologise to those affected by difficulties in accessing respite. The HSE recognises the huge importance of respite services for people with disabilities and for their families, and each area manages local demand in line with available resources.

“Unfortunately and despite incredibly hard work by our teams, there are waiting lists in some services which are too long,” they said, adding that they are “continuing to develop respite services and are engaging with the wider sector to secure additional services.”

Inadequacies

Family Carers Ireland says that the increase of 6%, in just two years, of carers who have never received respite highlights “ongoing inadequacies and gaps in the support system.” 

The survey uncovers the harsh realities family carers face in securing stable and appropriate housing necessary for effective caring, with 17% of mortgage holders, 35% of those in private rental and 32% of those in local authority housing having missed a payment in the past year.

Additionally, more than a third of family carers reside in homes that are not suitably adapted - this is exacerbated by the inadequacy of the Housing Adaptation Grant, which has not been increased in over a decade, forcing many to rely on family and friends, personal loans, or community help to make necessary modifications.

One carer, who wished to remain anonymous, shared: “We are in constant fear of an eviction notice coming through the door.

“That alone, has a negative impact on our outlook. Then with the security issues, no maintenance being carried out on the house, inadequate insulation. It all has a negative impact on daily life. Our landlord knows we won’t question anything as we have nowhere else to go.” 

The financial strain is evident, with more than a third reporting household incomes below €30,000 annually, significantly less than the national median, 29% cutting back on essentials such as food and heat and 16% struggling to pay utility bills.

Catherine Cox, Head of Communications and Policy at Family Carers Ireland, said: "This survey reveals a harrowing truth - family carers are being pushed to the brink. Despite promises of reform, they have been abandoned in a broken system.” 

She called for immediate action such as the abolition of the means test for Carer’s Allowance, appropriately benchmarking the payment and ensuring it is not taxed, eliminating the postcode lottery of supports and services and increasing the Housing Adaptation Grant.