The mother of a 21-year-old man with autism says she was forced to miss her own mother’s funeral because she could not get a carer from the HSE.

Gayle Murphy last month lost her mother after a seven-year-long battle with dementia.

Her son Luca suffers from a severe form of autism and cannot be left alone as he self-harms and requires "serious behavioural intervention".

On Lunchtime Live Gayle said her mother was in hospice care for the six months before she died – and she was unable to visit her throughout that time.

"I really needed to see her as we knew we were losing her," she said. "I was denied – nothing was given to me."

"I hadn't been able to be the daughter I should have been for the last year and a half since COVID because of my son's needs and the lack of care for him."

Funeral

When her mother did pass away, Ms Murphy contacted the HSE again – this time to request cover to go to her mother's funeral.

“I asked for this and I waited a while and then I got a message back to say, ‘Sorry for your loss but we cannot help you – there's nobody available,’” she said.

Ms Murphy said she could not bring Luca to the funeral, as he finds the car to be a very stressful experience.

"When he leaves the house, he's thumping his head, drawing blood and bashing himself," she said. "It's quite disturbing."

"I really have no help; I have nobody else taking care of my son.

"It's not like you could leave them with a stranger or pay somebody to sit with him.

"That's not been a possibility for quite some time because he's been so bad at self-harming and the unpredictability of his condition requires that he's with people who know him very well."

Gayle Murphy's mother (Photo by Gayle Murphy)

Ms Murphy had to watch her mother's funeral online and said the HSE carer services are "appalling" for people in her position.

"I've become numb over the last year because of the unfair treatment of my son – just the pure inhumane treatment," she said.

"It's really made me feel like there's very few good people left in the world.

"I think that's quite inhumane not to allow somebody to attend their parent's funeral when it's all they ask for out of the 24/7 caring situation when there is nobody else."

'Regressed dramatically'

Ms Murphy said Luca has "regressed dramatically" since he no longer has access to the services he needs.

"My son is back to babbling – a 21-year-old man babbling," she said.

"He went from being a highly active young man who hiked and climbed and rode horses... to a guy who they couldn't get out of the back of a bus to walk.

"He draws blood out of his arms or skin – this is a new thing that's happened in the last few months.

"If I tried to intervene, I could get hurt and I have got hurt quite a few times.

"I don't feel that my son is cherished or we are cherished in society. I don't think that we're even respected as carers. I think we're shoved in the corner. We should be quiet.

"We're given a pittance to support us when we can't have a life and very many of us carers cannot work – we are doing it full-time.

"Then there are the unfortunate people like me who may be doing it totally alone.

"Where is his entitlement to get what he needs? He has no voice other than mine."

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