Julie Anne Cunneen from Upper Glanmire says she was offered just six hours of home support for the year, despite submitting several letters from her doctor and other agencies detailing her own significant health issues which include severe burnout from the lack of respite over the past 15 years.
Jamie O Hara spoke to Julie Anne at her home and has this special report for RedFM News:
Readable version of audio report;
Julie Anne Cunneen is the sole carer for her 15 year old son Liam who lives with profound hearing loss, severe ADHD, Asperger's, dyslexia, dyspraxia and a recent arthritis diagnosis.
Julie Anne herself is deaf and has chronic arthritis that forces her to use a walker.
She says looking after Liam while trying to manage the condition is incredibly draining:
"You summon up the energy, you have really no choice but just to ignore the level of pain you've got yourself. Your body is screaming out that your joints are hurting you. You're in an incredible amount of pain. And then when you try to wash him, he's freaking out. For him, it's a very sensory overwhelming feeling of being washed, of being shaved. He's screaming at you. He wants to stop. And then when you stop, he's screaming. He wants you to shave him."
In terms of finances, Julie Anne says taking Liam to an appointment in Dublin costs her around €600 because she's physically not able to drive there and home again in one day and has to book a hotel room:
"There's no money for food and no money for heating costs. You just put it on your credit card and hope to god at some point in time you will find the money to pay it back; you're taking from Peter to pay Paul."
Julie Anne says carers like her have tried and continue to try to access any form of supports but are often left with nothing to show for it:
"We've spoken to everybody from Micheál Martin the whole way down to local TDs, local reps. We're getting the standard reply- five or six of us will all get the same reply. Oh my god the disrespect that all of us are getting a copy and paste reply! This is real. This is our lives."
The lack of support is something Julie Anne often struggles with:
"Do you know the way we were taught that if you're in trouble or you feel low, you should ask for help? But what happens when you ask for help and nobody listens? What are you left with then? You're left with just acceptance, this is it. This is what your life is going to be like. There are times when I just feel like getting in the car and driving away. When he's really having a bad moment and I'm being hit or being beaten or he attacks me. Those are the moments when you feel there's nobody protecting me. At that time when you're awake at night, that's when it's the most frightening point of your life and you kind of think- would it matter to anybody if I died tomorrow?"
RedFM News has contacted the HSE regarding the criteria for deciding how the available home support and respite hours are allocated.
Jamie O Hara RedFM News
