Though caring for his mother, Cathleen (87), is “all-consuming and exhausting”, Eamon O’Fearghail (47) is “terrified” of the time she is no longer with him. She was diagnosed with dementia in 2010.
“I am her only child and my father died many years ago. I am self-employed. At first I worked from her house during the day and cared for her. But I was worried about her at night and now I live with her,” he said.
"On an average day I get her up at about 8.30. She can dress herself. I get her breakfast and get her into her chair with a cup of tea and The Irish Times, and then I work upstairs."
He is a consultant in IT training, working when he can, which he says is less and less as it is too stressful to manage a workload while caring.
Although Cathleen can make tea or toast, she could not cook a meal, he says, or pay bills or do grocery shopping. Sometimes she forgets names and last week asked him his name.
“I check on her, make her lunch. Occasionally we go for a walk. I do all the things day to day that keep her content and comfortable, because at the end of the day that is what we carers want, for them to be happy and content, because that makes our lives easier. I know her contentedness is down to the fact that I am always there.
‘High price’
“But it comes at a high price,” he says. “I cannot really work, so I get the carers allowance, €209 a week. You find your own needs come last. I rarely get a night’s sleep because she wakes. I have an alarm to alert me when she does. It is all-consuming, and exhausting.
“I know for us things will only go downhill. She will end up in a nursing home when I cannot give her all she needs. Apart from the sadness and emotions around that, I will have to pick up my life. I am terrified of that. ”
Eamon was speaking at the publication on Tuesday of the pre-budget submission from Family Carers Ireland.
Titled Share the Care, it calls on Government to make three commitments to carers in October's Budget 2018.
Noting carers provide €10 billion worth of care a year to older people as well as chronically ill and disabled adults and children, it calls for greater investment in homecare; greater financial support for carers, and an allocation of additional funding for a new national carers strategy.
Catherine Cox, spokeswoman for the charity, said it was clear throughout its 22 centres that family carers were "undersupported and find it very difficult to access vital services, such as respite care to give them a much-needed break".
For Eamon, respite care is “essential, to get some kind of sanity”.
“I can’t afford to go away anywhere, but it’s just nice not have to think about someone else’s needs for a few days.”
