Emily Thyne, who stepped back from her career as a violinist two years ago to care full-time for her severely disabled son, Malachy (7), does not want sympathy or charity.
She wants real acknowledgment of the care-work she does and adequate practical and financial support to ensure she can keep doing it. At the moment, she says she can “put a good face on in the schoolyard”, with the help of counselling, provided by Family Carers of Ireland (FCI), and antidepressants.
These help with her “grief” – for the lost life she had imagined for Malachy; for her other children, Felix (7) and Junius (12); and for her and her husband, Simon Horne. “But they don’t change any of the crap about my life” – the relentlessness of the care-work, the exhaustion, the worry, the financial strain and the sense of no longer being part of society.
“Sometimes it feels like my life has been taken from me. I never wanted this, to be hidden away, caring all day, every day. I do because I love Malachy and it has to be done.”
On Wednesday, Emily and Malachy will be among a delegation to Leinster House with FCI to brief Oireachtas members in advance of next month’s Budget.
Key among their “asks” will be a complete overhaul of the carer’s allowance. The more than 30 years-old allowance, which is €236 a week at the top rate, is means tested. The whole household’s income is taken into account and only those with a gross income of less than €39,000 per year qualify for a full carer’s allowance.
Describing the allowance as “outdated, inadequate and completely undervaluing the work done by family carers”, Catherine Cox, communications manager with FCI, says the means test particularly impacts women – who make up the vast majority of family carers – as the eligibility criteria “force many women to depend on their husband for income”.
“We are calling for a participation income which would value care-work and carers as participating in and contributing to society by the work that they do.”
A right to at least 20 days respite per year for all carers, underpinned first by a national audit of how many respite beds there are, is also “critical”, says Ms Cox.
For families like Emily’s, there is “zero real respite”, she says. Malachy, who was born with a chromosomal 16q deletion, is just now learning to walk. He is non-verbal. He is peg-fed, though a tube in his stomach. He needs his “nappy”, or pad, changed five to seven times a day.
“He has to be lifted in and out of bath, in and out of his ‘cot’. He needs melatonin every night to sleep.
“He has become very needy and when he doesn’t get what he wants, he can be quite aggressive to himself and others – headbangs on walls or radiators or fridges. He pulls hair. I can’t wear jewellery any more because he pulls it out. He likes to grab skin.
“The impact on Felix and Junius is huge and I know they both worry about him too.”
Simon works as a lab technician in the Royal College of Surgeons in Ireland. Emily, who used to earn upwards of €300 a day, gets carer’s allowance. Qualifying entailed providing two years of bank statements and details of all income, savings and assets, as well as myriad medical reports. “It was utterly demeaning applying for it. I never asked for anything before. I felt like I was begging or trying to screw the system.
“I am angry about that. I deserve more than this. My family deserves more. My children deserve more than this. The emotional toll is huge.”
Malachy attends St Michael’s House special school six hours a day, Monday to Friday – where staff are “amazing”, says Emily. A home-carer comes for an hour at 4.30pm, Monday to Friday, but she cannot leave the house while they’re there. “It’s a help but not much and it’s not on our terms.”
He occasionally goes to stay with a paediatric nurse who used to care for him. “She does that because she loves Malachy but she is under no obligation to.” So, even that intermittent respite could end any time.
“We love Malachy,” says Emily. We want him to have a good life, where he is loved and valued. But surely the love and care we give him has to be valued too.”