A Cork woman whose sister has multiple disabilities and needs care has described their situation as a “total horror story”.

Marie says her sister Sarah (not her real name) was diagnosed with a severe intellectual disability at a young age and now, aged in her mid-30s, has chronic epileptic seizures and behavioural issues.

Sarah’s mother, a widow, looked after her needs for over two decades, at the expense of having no social life, until the job became too difficult.

The mother fell ill herself, developing an autoimmune disease, and Sarah’s needs became increasingly demanding.

On Lunchtime Live, Marie said they soon began to look elsewhere for care.

“Many times, social workers came to the house and did assessments, wrote big, long essays about how unsuitable it was, but there was no follow-up,” she said.

“There was nothing in the system to say my mother was no longer fit to care and we must find a solution; there is no planning in place in the system.

“[Sarah] was in a daycare centre where they provided daycare services but there were times when she refused to attend these and that was that, so it was not an option.

“In terms of respite, she went one time, she refused it the next time and then she was never offered again and that was the end of respite.”

'We really should be disgusted with how we're treating our carers!'@andreagilligan is outraged that it takes going on national radio for a carer to get their respite@LunchtimeLiveNT pic.twitter.com/OVTeAiEMtF

— NewstalkFM (@NewstalkFM) June 11, 2024

Marie said it's been a “total horror story” for her family.

“There’s a huge amount of opaqueness in the system in terms of people that believe they are going about getting care, there is no clear mechanism to access it,” she said.

“GPs can identify the need for care, so can social workers, and family members cry out for it, but there’s no process or button to press.

“I find it outstanding that on a national level, my sister who was diagnosed when she was three, could not live independently from that point on.”

'It isn't the right place'

With no other option available, Sarah is now living in a hospital full-time.

“The current location of my sister, where she has been for the last 12 months because she requires 24/7 care, is Cork University Hospital,” said Marie.

“This is the only place at the moment that’s been identified where she can be looked after, and her needs met.

“She’s living in a medical acute assessment unit; it isn’t the right place, not in any shape or form, but having said that, the nursing care and the level of staff is very good.”

Care needed

Marie said something needs to change.

“The carers in these situations need the good people of Ireland to advocate for them.

“These are people that don’t have time to advocate for themselves; they can’t leave their homes.”

She also called for the public to only vote for politicians and parties that have a “strong policy for change in this area”.

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Main image: Sarah in her hospital bed. Image: Supplied