Carers in Crisis: ‘What will happen to Sinéad when we go?’

For the past 53 years Mary and Denis McDonnell (both 79) have been caring for their daughter Sinéad, in their home in Douglas, Co Cork.

“Sinéad was born with cerebral palsy of a very high degree,” Mary says, by phone. “She also has curvature of the spine, a dislocated hip, is doubly incontinent, and is fed via a feeding Peg [tube]. She’s on a lot of medication. She can’t sit, or turn, or do anything for herself physically. Sinéad is completely dependent.”

As we talk, Mary has to take frequent breaks to catch her breath. She has asthma and finds it difficult to breathe. Recently, she had pneumonia. Her husband is “not in good health”, she says. As they prepare to turn 80 next year, they worry constantly about their daughter’s future when Mary becomes too frail to care for her.

“I am in the horrors about what will happen to Sinéad when we go,” Mary says. “She can do nothing for herself. We love our daughter and are happy for her to be with us at home but, as carers, we are a community that has been taken for granted by the Government for far too long. We save the Government so much money and we are not appreciated for the work we do.

“As parents of children with disabilities, we can’t just walk away and they know that. But it’s not only our children who grow older, we are growing older too. There has never been enough money, but in recent years the situation has become absolutely appalling.”

Home care

On November 19th, The Irish Times published an interview with Johanne and Alan Powell, a couple in their 60s facing retirement and still caring for their profoundly disabled daughter, Siobhán. Since the interview appeared, The Irish Times has been contacted by several other parents of disabled children. Mary McDonnell is one of these.

The McDonnells do now get support, in the form of HSE-funded home care for their daughter. People come in during the day and night in shifts, to help with the Peg (percutaneous endoscopic gastrostomy) feed, move Sinéad in the bed, change her and all the other elements required for her care. It is only in the last year or so they have received overnight help. They are grateful for this, even though it means having someone else in their home six nights a week.

Until last December, the McDonnells received five fortnights of residential respite for Sinéad each year. “It’s a very difficult and hard job that we do, and we need that respite, especially as we get older,” Mary says.

“Last December, we were told that the respite was being withdrawn by Hiqa, because there wasn’t the right ratio between nurses and the people being cared for. We were told it was a ‘temporary cessation of respite’, but nothing has happened since. It was not replaced.”

So this year, instead of 10 weeks’ residential respite for Sinéad, and a concurrent break for her parents, they got one full week and two part weeks. “Two of the weeks were short weeks,” Mary explains. “They went from Monday afternoon after 3pm to Saturday after lunch, so they were just five days, not a full week.”

‘We have to shout’

From Monday to Thursday, Sinéad goes to an Enable Ireland care centre at Little Island in Cork. She doesn’t attend on Friday, as she’s too tired by then. The rest of the time, she is at home.

“I don’t ever want to part with Sinéad and I love looking after her,” Mary says. “I am her primary carer, but the fact is, I get a lot of asthmatic attacks and coughs, and I am getting a bit long in the tooth to be doing this. It is very hard going.”

In the past year the couple have been looking for a residential placement for Sinéad. “I want to know that there is going to be a residential place for her, a home from home, and I want to know that, in the meantime, there will be respite for me,” Mary says. “We have been told there are no places available for her, although the HSE are well aware of our case.”

Mary is weary of being taken for granted by both State and society. “People tell us, you’re great, you’re fantastic, but we don’t want them to say that. We want people to have some idea of the difficulty of our situation. The reality is that we have to shout and fight for every service.

“Funding has always been a problem, but the Government does not seem [to be] . . . prepared to look after us, and our needs, and those of our daughter. I want the Government to finally sit up and take notice of us.”