‘I cared for my boy for 10 years, now I’ve only 12 weeks to f ind a job’
Grieving mother faces looking for work just a fortnight after her son’s death as carer’s allowance is to be taken away
A YOUNG mother who spent the past decade caring for her severely ill son was told just a fortnight after he died that her carer’s allowance – which is almost half her family’s income – will be taken away.
Susan O’Neill’s son Daniel, who had spastic quadriplegic cerebral palsy and was unable to walk or talk, died of pneumonia on May 3. He was just 10 years of age.
On Thursday last, only two weeks later, Susan received a letter from the Department of Social Protection saying her allowances would be cut off within 10 weeks.
The grieving mother said she understands she is no longer entitled to the payment, but that parents who find themselves in similar tragic circumstances should be given more time to find alternative work.
Susan told the Irish Mail on Sunday: ‘I understand that if my role as carer ends, I’m no longer entitled to receive the payments. But 12 weeks definitely isn’t long enough to expect a parent to be able to overcome the loss of their child and get themselves together emotionally, mentally and physically so they’re able to get up and go straight into full-time work.’
The mother-of-four, who lives outside Naas in Co. Kildare, has not been able to work outside the home because of the round-the-clock care Daniel needed over the past decade. And she admits she cannot face going back into the jobs market so soon after losing her son.
She told the MoS: ‘It is a massive drop in our income, and obviously I don’t feel ready to go and get a job myself at the moment, so it is going to be a big change. I am not in any position to make a CV right now.’
She added: ‘I haven’t been informed of anything else I can apply for. When Daniel was smaller and his issues started we weren’t informed about what we were entitled to. So you kind of have to find out for yourself.’
The removal of Susan’s allowance will almost halve the family’s income, taking away almost €600 a month they were entitled to while
Daniel was alive. And with rampant inflation, she admits they will struggle financially.
‘The cost of living is going up and our family income is going way down. [The lack of money] is definitely causing some worries for us as we have Daniel’s funeral expenses coming in the next few weeks, and usually funeral expenses are €5,000 to €7,000.’
Susan said the family will have to rely on illness benefits claimed by her husband Alan, who has been awaiting surgery for two years.
She says her family are used to a tight budget as Daniel’s frequent long visits to hospital added travel, parking and food costs to their already stretched finances.
Susan recalls: ‘We found that at hospital times we would completely use up our allowances, even the next week’s payments. Myself and my husband would swap every day so one of us would be at home to look after the other kids.’
Hospital parking charges, at around €24 a day, also ate away at their finances. Fuel cost up to €120 a week as they travelled between Kildare and Dublin ‘at least twice a day to swap’. They would often go without food to save money when Daniel was in hospital.
‘The cost of eating in the hospital was huge and some days we would just have a lot of coffee because we couldn’t afford the food,’ she said.
The couple also had to think about their three other children during emotionally draining and expensive hospital stays with Daniel.
Susan said: ‘When we were in hospital we were in two places at once. Our kids at home were kind of thrown about everywhere. We had to try and keep everything as normal as possible. We had to make sure they had proper food. We always had to send them to friends’ houses and leave money for food.’
A low point for the family came in October last year, when Daniel had a particularly long stay in hospital and Susan said they ran out of money for food and Christmas.
A social worker put the family forward for a grant from the charity Cliona’s Foundation, which provides financial support to families with critically ill children.
Charlotte Kavanagh from the charity said: ‘We cover anything from petrol, to food, to parking, to oil in the tank, to paying for babysitters. Non-medical costs are very wide-ranging. Studies have shown that it costs a family up to €15,000 a year to care for a child with a longterm, life-limiting illness. So the question has to be asked, who’s responsible for this?’
A Department of Social Protection spokesman said after the closure of carers’ allowances, other financial supports are available to people depending ‘on their circumstances’.
The department said it ‘recognises the need for a transition period during which people can grieve and plan for a life following the death of a family member’.
‘I am not in any position to make a CV right now’
‘Some days we couldn’t afford the hospital food’
‘It costs a family up to €15,000 a year’