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Amy Rose Byrne with her Dad Eamonn who she cares for in his home in Ballyfermot

Amy Rose Byrne with her Dad Eamonn who she cares for in his home in Ballyfermot

Amy Rose Byrne with her Dad Eamonn who she cares for in his home in Ballyfermot

THEY are the unsung heroes who spend their lives looking after disabled loved ones, yet the relentless cuts in state help, keep making life harder.

THERE are more than 187,000 people around the country who provide full-time care for their loved ones.

This figure includes 6,500 children and, more shockingly, 800 of those who help care for a family member are under the age of four.

The Carers' Association has launched their Give Carers a Break campaign – appealing for the public's support in asking the Government to reverse the Respite Care Grant cut, to stop cutting home-help hours and to prevent further cuts to ensure that family carers are not hit again in Budget 2014. While most of us feel sympathy and outrage on behalf of the country's carers, we are fortunate enough to be able to compartmentalise those feelings and move on with our lives.

For people like Des Coffey, this is not possible. The 48-year-old Tallaght man is a stay-at-home dad, but his life is very far removed from the norm as he is the sole carer of his daughter, Danielle (20), who has autism and severe learning difficulties.

"Danielle and I live in a small maisonette in Tallaght and I look after her around the clock," he says. "As well as having profound learning disabilities, she is severely autistic and suffers with bladder and kidney infections. She is a sweet angel, but like most young children, has tendencies to be disruptive.

"She has the mind of a very young child and behaves as such. She has difficulties with her eating, she can't chew her food and has to drink her fluids through a sports cap bottle, otherwise she must be monitored when drinking from a glass. I have to dress and wash her as well as brush her hair. I also cut her hair as she would go berserk if I brought her into a salon. In fact, nearly everything that people do for themselves, I have to do for her, including brushing her teeth

"If we are out, a constant eye must be thrown upon her as she has a tendency to wander off. She can't talk, either, so communication can be very difficult at times.

"My days are a daily routine of getting up early, to prepare her breakfast, getting her dressed and washed and as my car is off the road, we use public transport.

"That in itself is a nightmare at times, because if Danielle is in any way of a foul mood, everybody on the bus suffers.

"If she does not get her regular seat, the person in front of her will either have their hair pulled, punched in the back of the head or she will cry and scream until we get off the bus.

"Because there is no funding to transport her to and from the school, this will be an ongoing thing until the car is repaired which could be months away, because I don't have €1,500 to get it fixed."

With Danielle is dropped off at her day-service, Des does all the errands he has to do, including shopping and housework, before going back to collect his daughter at 3pm. The bus journey home will be as fraught as it was in the morning and once back at the house, he will organise dinner before getting them both ready for bed.

He is so exhausted by his routine that he has little time for anything else.

"As of late, I haven't been too well and I have had to take it easy, so I am unable to do things I enjoy, like gardening. So 9pm is time for bed – and I wash her, clean her teeth and put a nappy on her for bed. By 11pm and after changing her nappy once more, she will settle in for sleep.

Scream

"Managing financially has been a great struggle of late. Because I need the heating going virtually all the time when she is at home, my bills can be fairly high. I budget everything and so by the time everything is paid for, we may have a few euro to venture out for some entertainment like the cinema or McDonald's at weekends.

"I try to put a few quid aside for a break away for her like Tramore or somewhere nice, but with the car out of commission, I have to concentrate on that for now, so I reckon a holiday will be out of the question.

"I don't have opportunities to get a part-time job because there aren't enough hours in the day when you are looking after a child like Danielle – so an alternative income is beyond my means.

"Emotionally, I feel frustrated, angry, depressed, isolated and let down. Trying to find the right kind of help out there is very demoralising and only for the bit of respite that I get from The Menni Services, I don't think I would be around today to look after my daughter. Friends are a no-go-area because all of my time is taken up with Danielle and I read the newspapers every day just to see the fat cats swarming in their wealth that they have stolen from our resources.

"This might sound shocking, but as the Government will not back down with their ridiculous proposals and policies, the only way to get their attention is to be like them.

"So, if every carer in the country were to land their loved one in a nursing home, then that is the only way the cutbacks will be stopped. It will automatically change their point of view of where their real targets should be focused on, like bankers, judges, highly paid civil servants and other people like that.

"Until this day happens, the the Government will continue to attack the weak and vulnerable and we just keep taking it.

"It's a pathetic situation with a pathetic Government turning our beautiful country into a pathetic state."

In a reversal of roles, 22-year-old Amy Rose Byrne looks after her 61-year-old father, Eamonn, since he became immobile after a spinal chord injury two years ago. Although she doesn't resent the time spent caring for her dad, she does feel that it is a terrible position for a young woman to be in and would like the Government to show some more understanding.

"Two years ago my dad started complaining of difficulty walking, he had a number of tests but the doctors couldn't find anything wrong with him," recalls the Ballyfermot woman.

"But then after a scan at the Mater they discovered he had a slipped disc and operated on him through his neck. They also discovered the spinal chord injury which prevents him from moving about properly.

"He walks with a stick and I help him with all the little things we take for granted.

"I get him up, washed and dressed every day. Then I might take him out to the park and then back home where I make the dinner, clean the house and just sit and keep him company. Every Friday I get three hours of Home Help, which is brilliant, so I can use that either to have a lie-in, to get jobs done or to go and visit my friends.

"I love my dad to bits but sometimes we get on top of each other. I know I don't have it has hard as others might do but being a carer at my age is not easy. The Government needs to understand how hard it is for us and show us a bit of respect."

Catherine Cox, of the Carers Association, agrees and says the Government needs to come up with an alternative plan for carers.

"Many carers are struggling to put food on the table and continue to care for their loved ones," she says

"They are cutting back on basic necessities, like food, gas and electricity, and further cuts could force them to put their loved-ones into residential care which will cost the State far more and goes against Government policy of caring for people in their own homes.

"We want the Government to review the cut to the Respite Care Grant, which is due to be paid in the first week of June, or find an alternative means of allowing carers to take a break from their stressful roles.

 

CAMPAIGN

"We want a commitment that there will be no further cuts to the provisions of the National Carers Strategy, which was published last year, and promised to value and support family carers in their roles.

"We want to see a statutory entitlement to Home Care services similar to those offered when a person is entering a nursing home under the fair deal system.

"Our campaign 'Give Carers a Break' highlights the plight of family carers who are suffering from the ongoing erosion of supports and services.

"We are asking the public to view and share our short two-minute video on You Tube and place a 'Give Carers a Break' sticker in their car." These can be obtained from DocMorris Pharmacies or by calling freefone 1800240724.

See the video at www.carersireland.com


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