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'I lie awake and worry about the future, but you must live each day as it comes'

Liz O'Neill is one of Ireland's 355,000 family carers and as the Covid-19 crisis continues, so does the pressure for these families. As the main caregiver to her two daughters Emma and Katie, she talks to Liadán Hynes about how her family is managing the return to school

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Liz O’ Neill is a family carer for her two daughters, Emma and Katie. Photo: Dylan Vaughan

Liz O’ Neill is a family carer for her two daughters, Emma and Katie. Photo: Dylan Vaughan

Dylan Vaughan

Liz O’ Neill is a family carer for her two daughters, Emma and Katie. Photo: Dylan Vaughan

'Covid-19 and the lockdown it enforced cut all parents and children off from the educational and childcare services so essential to the mental wellbeing of all involved. Last week saw school children around the country return to the classroom, but for many others, the path back has not been straighforward.

Liz O'Neill is full-time carer to her two teenage daughters, Emma and Katie. "Pre Covid, my elder daughter Emma, who is nineteen, went to a day service in New Ross and Katie, who is sixteen, would have been in school," explains Liz. "When they were gone I used that time for me. Whether that was to do housework, catch up with stuff so I was ready, and really available for them when they came through the door. To get that break, to feel like, 'ok I've recharged my batteries for those few hours, I feel like I can face into this again', is so important. Because it can be mentally draining at times."

Liz and her husband Damien have three children - their two daughters, and son Charlie, fourteen. Both girls have an intellectual disability, a diagnosis of global developmental delay.

"Emma would have mild-to-moderate intellectual disability," Liz explains.

"Katie would have moderate-to-severe intellectual disability."

From the beginning Liz took on the role of family carer. "I always thought that as time went on I would be able to have a bit of a life for myself, whether it be work or whatever. That that would automatically happen. But it was fairly obvious as time did go on that that probably wasn't going to work for us, because Katie had a lot more needs, and she has medical needs, which mean you have to be available all the time."

Liz recalls how accepting the situation actually became, in ways, harder as the girls got older.

"At the beginning, they were just kids. The differences weren't as obvious. The gap gets wider as they get older. For me, I don't think the grief really started until they came into their teens. When you have five-year-olds, you're all in the same boat. As they got older, into the teenage years, I could see how real this was going to be."

Connecting with other carers in similar situations, creating a network of support, but also keeping a balance of life beyond caring, has been crucial.

"It's impossible for people to get it when they're not living it. My friends became just people like me. That's kind of changed in the last few years. It consumes your whole life if you're doing that. And it's important that you do have a life that is about friends talking about clothes, or their jobs; something that's not disability."

She describes how she and Damien have supported each other over the years.

"I can't remember the last time we went away. Before Covid, we did occasionally go down to get a bite to eat, but it would be very rare, maybe once a year.

"This kind of situation, you either sink or swim. For us, we swam. So if he felt he needed a break, or vice-versa, we really supported each other. That's not to say we weren't going through grief. And there were times when we couldn't even talk about how we felt. But we very much became a team, and supported each other."

When the Covid-19 outbreak began, the couple were particularly anxious given Katie's medical needs, which made her vulnerable. In May, Katie contracted meningitis and encephalitis.

Liz spent four weeks in hospital, first in Crumlin, then later more locally in Kilkenny, sitting by her daughter's bed, getting home once or twice a week.

"It was very serious. We didn't know whether she was going to be left with brain damage. It was probably one of the darkest times for me ever in my life."

Meanwhile her older daughter Emma was at home struggling, cut off from her day services, worrying about her sister.

Katie pulled through, although her ongoing recovery is a slow process.

"When she came out of Crumlin, I would have been really upset. She was not near to being the same child. Her speech was affected, her character was completely different.

"We're a couple of months home now. Each day and week she's made huge improvements. Katie was the life and soul of our house, because of her character."

Katie's doctors have told her parents that full recovery will take a year, and so she will not be in a position to go back to school for some time. This has impacted severely on Emma's ability to access her day services, which are now gradually returning.

Before Covid-19, Emma had spent thirty hours a week in day services, a place her mother describes as bringing meaning to her life.

But as the centre reopened, Liz, whose younger daughter Katie hates car travel, was unable to get Emma to the centre, which is located half-an-hour from their home.

"Katie doesn't like getting into a car and going places. Especially now, we don't want to put any unnecessary pressure on her."

Liz had witnessed the impact the prolonged isolation had on her older daughter.

"Emma would be very sociable, bubbly, she loves going places, doing stuff. I'm finding now that she has been more emotional, crying a lot. She's has been fed up. I suppose like any of us, if we don't have a purpose to life, where does that leave you? She's missing her friends, that is a big thing for her, the socialisation. The staff. Her life. Her friends from the Special Olympics."

In recent weeks, in a move that is hugely helpful to the family, the HSE and day service managed to organise a private taxi service to take Emma to school, for the interim.

It has meant the difference between Emma reconnecting in with her day services, rather than languishing at home, cut off from her community.

"It'll just make it so I'm not suffocating altogether. I can't be everywhere at the one time."

Liz points out that many carers will find themselves in a similar situation; juggling several responsibilities that might preclude their leaving the family home each day to take on additional duties of transportation.

"For any family the transport is vital, but particularly if you have small kids, or someone else with disability at home, or an elderly person, who cannot be left on their own at home. There are loads of situations where people can be caring for a second person at home."

Seeing Katie recover from her illness has left Liz with a sense of gratitude that has sustained her until now, but the past few months have taken a severe toll.

"I think if she hadn't been that sick, I would be climbing the walls, and getting very angry. I'm not saying I'm not stressed out, I am. I do feel that in about six months' time I'm probably going to fall apart. Because you can't keep this up.

"Maybe I'm on adrenaline. But I do think in particular in the last week or two, I'm starting to feel a little bit more stressed about everything. I kind of feel I've no one to turn to. The disability services are just so underfunded. I feel family carers have been totally left behind. Before Coronavirus, but even more so now."

Taking on the role of carer has a huge impact on one's mental health, Liz points out. The added isolation, and the reduction in services in the past few months, has compounded an already challenging situation.

"I'm not even going to touch on the future," Liz reflects.

"You can only live each day as it comes. But it is very worrying. I would lie awake sometimes thinking what would happen if anything ever happened to us. And I just have to shut myself off."

CARER OF THE YEAR

Family Carers Ireland seeks nominations for the Netwatch Carer of the Year Awards 2020 on 6 November, which recognise, celebrate and shine a light on the remarkable contribution of Ireland's 355,000 family carers. Nomination forms are available online at familycarers.ie, through Family Carers Ireland's twenty-one resource centres nationwide or via the national freephone careline 1800 24 07 24.

Irish Independent