Monday 17 December 2018

'Who is looking after the carers? We shouldn't have to fight for everything' - mum of three children with special needs

Mum-of-seven Liz Forde has three children with special needs. She devotes her life to round-the-clock caring for her family - with little State support

Pictured from left to right: Liz and Dave Forde with their kids Ava, Ellie, Cillian, Emer, Gwen and Kyle at home in Kerry. Photo: Domnick Walsh
Pictured from left to right: Liz and Dave Forde with their kids Ava, Ellie, Cillian, Emer, Gwen and Kyle at home in Kerry. Photo: Domnick Walsh

Kathy Donaghy

It's rare that 38-year-old Liz Forde sleeps through the night. Her nine-year-old son Cillian, who has cerebral palsy, epilepsy and is tube-fed, needs 24-hour care.

Her youngest child, Gwen (7) has hyper-mobility syndrome and has been diagnosed with global developmental delay. She has issues in school and is still in nappies.

Another daughter, Ellie (14), has Asperger Syndrome and while she's excelling in school, her condition means she's very particular about what's going on in her life and can get easily frustrated if things don't go according to plan. Liz and her husband David live in Ardfert, Co Kerry and have four other children. While the eldest, Shane (20), has flown the nest, Emer (17), Kyle (12) and Ava (10) are still at home and busy with school and extra-curricular activities.

However, because Cillian is so dependent, Liz says she's constantly trying to make sure her other children get the attention they need.

"As well as being a carer, you also have to be a parent. Cillian has to be lifted and he's getting heavier - it takes two of us to give him a bath and he hates the water.

"I have to make sure my eldest daughter can mind the younger ones when we are busy with that. It's a lot of pressure on her too," says Liz.

She explains that Gwen's condition is also very challenging and they are facing into numerous hospital and medical appointments in the coming months. This means trips to Our Lady's Children's Hospital in Crumlin from the family home. Gwen also suffers from serious eczema and is asthmatic. The constant demands of caring meant David, who worked full-time up until fairly recently, had to leave work after Liz herself became ill.

Last August her own health failed and she was hospitalised for three weeks. A mild stroke was diagnosed and while she briefly lost her speech, she says it came back. After intense physiotherapy and occupational therapy, Liz recovered. She says it was a case of "get on with it". "Witnessing what my own kids have to do every day I just said to myself 'get up and cop on'," she says.

"Some days I don't feel like I'm one person any more. I feel like I've turned into an occupational therapist [OT], a physio and a doctor. I went back to study at night to be an SNA [special needs assistant]. The only reason I did it was because I wanted to understand about my own children better. It helped me massively," says Liz.

A typical day in the Forde household starts at 7am and sees Liz clean and change Cillian before putting him in his wheelchair. Cillian attends Nano Nagle School in Listowel and a bus picks him up at home, although it's rare that he attends five days a week every week due to his condition.

In the mornings, Gwen also needs help to get dressed and is on three medications a day as well as daily creams for her eczema. Cillian is on 12 medications a day. Last year, Gwen didn't get a SNA at school and so missed much of the school year. Liz is hopeful an application for an SNA will be successful this year.

There are few weeks when the diary is not busy with appointments for doctors or hospitals, physios or occupational therapists. Getting the kids out to school means getting time to get things ready for dinner and do things like clean the house.

Because of the demands of special needs children at home, Liz says she and David work hard to ensure the other children don't miss out on doing things they love, like GAA or horse riding. Every two weeks either Liz or David take one of the kids on a dinner date or a trip to the cinema. This is not something they can all do as a family, because someone must always be with Cillian.

Last March, the family went on their first ever foreign holiday. It was a trip to Portugal for four days that took two years to plan. Liz's parents went with them along with a suitcase of medication. But Liz says she wouldn't do it again as it was too much pressure.

While Liz says the life of a carer is tough and it's 24/7, she says you have to make the most of the small things in life. Just a few days ago she sat in the sitting room with two of her daughters and they ate ice cream and watched a movie, singing along to the songs in the film. "Those moments are a blessing, that you can sit down and do something like that," says Liz.

She explains that Cillian's condition means they don't know how long he'll be with them. When he was born, he was given a year to live. Liz has made plans for Cillian's death, even though she knows that when the time comes it will be devastating. But she says she had to do this because she doesn't want to be in a panic when the time comes.

"My fear is that it could happen suddenly because he has sleep apnoea. I needed a plan for the kids. The kids need us to be strong. If we have something like a plan it will make it a little bit easier. He's still here and he's meant to be around".

On top of all she does in her own home and with her own family, Liz volunteers with older children with intellectual disabilities every Wednesday night. "People say to me 'are you mad? Don't you have enough at home?' But I enjoy spending time with them. They have their own quirks but they are less difficult than any person I know," she says.

Aside from this evening out of the house, Liz enjoys a walk on the beach sometimes, where she says she can clear her head and talk to herself.

One night a week a nurse is assigned to Cillian. She comes for 10 hours in total. The nurse isn't allowed to stay in the house without Liz or her husband. There is no other respite for the family.

"You have to be there. There is nobody else there to do it. I couldn't do this on my own. David is my rock. We make a good team - people always say that," she says.

"Over the years, I've met people in hospital with Cillian; people who were not lucky enough to take their own kids home. You have a sense of guilt that your child is still alive. I say to myself if this is my path, I'm going to get on with it. But there are times I do get upset and I do cry," says Liz.

In a perfect world she wishes she didn't have to fight so hard for everything. She'd love for a politician to come to her house for 24 hours and watch what she and her family do.

"Come back and tell me it's not a full time job. It's not nine to five, it's 24/7. There's not enough support for carers. The only respite I get is when Cillian goes to school. Who is looking after the carers? We shouldn't have to fight for everything. I'm fighting for Gwen. I am fighting for my son's wheelchair. He's waiting six months for an outdoor wheelchair. He's entitled to it. Why can't the Government just realise families are going through enough. Don't drag them down further," says Liz.

Catherine Cox, spokeswoman for Family Carers Ireland, says families all over the country are struggling to cope, left to their own devices to manage by a State that takes them for granted.

To mark National Carers Week, which runs until Sunday, Family Carers Ireland is trying to raise awareness of the work the country's 355,000 family carers do, day in, day out.

It's estimated that family carers save the Government €10bn in unpaid care each year, collectively providing 6,608,515 hours of care per week.

Cox explains that in this country a so-called postcode lottery can often dictate the kinds of home care people caring for a loved one at home get. "It's fragmented and it's inconsistent as well as being unfair and inequitable. Home care supports are discretionary. There is no State entitlement to home care," she says.

According to Cox, there is no one county where supports are brilliant. She says the reason carers are not out on the streets, banging on the doors of Government, is quite simply because they are flat out caring for loved ones constantly.

As well as lobbying for better supports for carers, Family Carers Ireland has just announced the first ever National Awareness Day for the country's carers to take place on June 21, the longest day of the year.

● For more information check out carersweek.ie

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