The last thing Moira Skelly worries about is herself. Like most full-time carers, her day is taken up with the physical and emotional demands of looking after her 23-year-old daughter Ciara. Her own needs are at the bottom of a large pile.
News this week that carers in receipt of carers allowance or benefit are entitled to a free GP visit card means that there is one less worry for Moira and her family.
“There is such a financial burden for carers. I had to quit my job to care for Ciara because you can’t simply get a childminder for a child with physical and intellectual disabilities like Ciara. That immediately meant that the income for the household was halved. I can’t get a medical card because my husband is working so it is a huge relief to know now that if I feel unwell or if I have a little niggle, I can pop along to the GP straightaway and not leave it until the end of the month when my husband gets paid,” explained Moira.
“And it is all too easy to forget about myself and keep putting things off. Every night I collapse into bed feeling exhausted but never get around to doing anything to help myself because you just have to get back up the next day and do it all over again.”
Moira’s daughter Ciara was born with severe epilepsy and has intellectual and physical disabilities. Her mind is like that of an 18-month-old.
She said the free GP card means that at least people are starting to recognise the extraordinary work being done up and down the country by carers.
“It is nice to finally see that our efforts are being recognised and appreciated. I have to keep myself well to care for Ciara and this makes it a little bit easier to do,” said Moira.
“I have rheumatoid arthritis, which was diagnosed last year, and I know that it is largely to do with the physical nature of taking care of Ciara. She’s 75kg and I’m less than 60kg. She needs a hoist and there’s a lot of physical work involved – from rolling her over to change pads to sitting her up to feed her.”
Her husband works in the civil service so is able to avail on flexitime and be around in the mornings to help get Ciara up, washed and dressed.
“It is definitely a two-man job and it’s great that he can stay on in the mornings. Of course, then he can’t leave the office until 6pm to make up the hours so that’s the payback in the evenings,” she said.
Ciara is also a very bad sleeper, adding to the strain on her family
“She has her good and her bad nights. She wakes most nights and other nights she might not sleep at all. It is very tough but I don’t dwell on it because you would end up resenting her. Let’s just say it’s been a long time since we had a good night’s sleep,” said Moira.
Ciara has intractable epilepsy, this means that medication won’t help control her seizures. She has been fitted with a VNS implant which works like a sort of pacemaker for the brain, reducing the amount of seizures she has. Unfortunately, she is currently on a waiting list for the battery to be replaced.
“The battery is now dead. It has to be replaced every three years. We are on a waiting list for the procedure, as you cannot go privately. From what I know, it is a simple enough procedure, which would be done as a day patient. But, in the meantime, she is constantly seizing. Her eyes would be rolling four or five hours at a time. It’s horrible for her,” said mum Moira.
Ciara attends the adult day services in Stewarts Hospital in Dublin. For most of Ciara’s life, that was all the support the Skellys got with her care.
“I was told for years by public health nurses that I wasn’t entitled to any help with her. So I just stopped asking. A lovely lady from Family Carers Ireland comes in three days a week to help me to bath her and that’s a huge help. It was only after Ciara was in intensive care with sepsis that the social worker at the hospital approached me to find out what help we were getting,” said Moira.
Now the family gets two weekly visits, to either help bathe her and do her hair or take her out for a few hours.
“It is a great little break and gives me a chance to catch up on some things. There are always things to be done,” she said.
Carers who are in receipt of carers allowance or benefit can register on www.mymedicalcard.ie for the GP visit card which entitles them to free GP services.