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“PEOPLE TELL ME all the time that they don’t know how I do it, but really, I have no choice. No carer has a choice.”
Dubliner Louise O’Keeffe is the sole full-time carer to her four-year-old daughter Ella.
Ella O’Keeffe lives with a rare condition called Neurofibromatosis Microdeletion Syndrome. The condition causes tumours to grow throughout her nervous system, along with autism, joint issues and intellectual difficulties.
Speaking to TheJournal.ie, Louise O’Keeffe said that she wasn’t aware of Ella’s condition until she was born, and even then it took three years before her diagnosis was made official.
“It wasn’t until Ella was born that we realised that something was wrong because from the minute she was born she cried a lot, she was always sick,” O’Keefe said.
“Really, I was thrown in at the deep end, I didn’t know this was going to happen.”
Already the mother of her son Lee, who is now 10 years old, O’Keefe was left with no choice but to leave her job and become Ella’s full-time carer when she was born. She has been unable to return to work since.
“I couldn’t go back to work when I had her because she took up all my time. It was 24/7, all throughout the night. It was really, really hard,” she said.
‘I don’t know what my night is going to be like’
Speaking of her daily routine at home with Ella, O’Keefe said that the day doesn’t end once she puts Ella to bed, as she could wake up numerous times throughout the night.
“It’s not like you can go to bed and switch off and know you’re going to get a full night’s sleep. Ella could wake up at 3am and be awake for the day. I don’t know what my night is going to be like,” O’Keefe said.
During the day, Ella requires round the clock attention as she has no sense or understanding of danger.
“She’s a flight risk, she has autism and an intellectual disability, so you can’t take your eye off her. She has no sense of danger, so doors and windows have to be locked at all times,” she said.
Ella attends a specialist preschool for four hours every morning. Aside from that, O’Keefe receives home help for five hours a week, provided by the Jack and Jill Foundation.
However, as Ella turns five years old next month, the home help from the Jack and Jill Foundation will come to an end.
“I use those hours to spend time with Lee, we would go off together and do something nice. That’s all we have. It’s only five hours a week but those five hours are invaluable,” O’Keefe said.
“That care will stop next month and I won’t have that time to spend with Lee, we really enjoy that time together,” she said.
With regards to the possibility of receiving help from the HSE, she said that she still may not get to bring Lee out to spend time alone with him, as the HSE requires that the parent or designated individual is still present in the house when nurses and healthcare assistants are present.
In a statement to TheJournal.ie, the HSE said: “Children with complex healthcare medical conditions have substantial medical healthcare needs and a homecare package is required when a child has a medical and/or nursing needs that cannot be met by existing primary care services and children’s disability services.
“The HSE responsibility is to facilitate the child to lead as normal a life as possible in order to maximise child quality of life and developmental opportunities and to keep the child out of hospital as much as possible.
“Overall responsibility for the welfare of the child is that of the child’s parent/s and service provision should work in tandem to support their role. Staff will not assume sole responsibility for a child where parents may not be available and a designated and competent individual (appointed by the parents) must be present to act in loco parentis.”
So, for now, O’Keefe believes that she will continue to be the sole full-time carer for Ella heading into the future.
“Being a carer is exhausting at times, emotionally and physically exhausting, especially if we have a bad night or if she gets sick.
I can’t be off guard, I’m on my guard 24/7. I have to watch her very carefully.
“Ella will need my care for the rest of her life. Hopefully, she will progress as she gets older but she will always be delayed, she will always have an intellectual disability, she will always need my care,” O’Keefe added.
I’m a carer now, that’s my job for the rest of my life.
Lack of support
As of Census 2016, 41,185 people provide 43 or more hours of unpaid care to someone with a disability in Ireland. Many of them, like O’Keefe, receive just a few hours a week of support from an external source.
“There’s not enough support in Ireland, there’s not enough understanding,” O’Keefe said.
People tell me all the time that they don’t know how I do it, but really, I have no choice. No carer has a choice. They’re our children, of course, I’m honoured to do it for my child. I would do anything for my kids, but you don’t have a choice.
“So, when someone says we’re great for doing it, we’re not great, we’re just normal people. If it happened to your child you would do it too.”
Next week is National Carers Week, which highlights the experiences of thousands of family carers across Ireland that look their loved ones.
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This decent, committed, loving, caring, dedicated but exhausted mother is So So deserving of more supports across the board- be it home help, specific interventions, respite, day relief care, night supports- whatever, she knows best…No ifs, no buts, no excuses. We are pre occupied with so many other agendas about ‘ choices” etc at the moment, its past time to focus on REAL, day to day, on-the- ground Issues like this woman’s dilemmas and challenges.
@Margate: Thank you x
@Johnny Leddin: Thank you, much appreciated.
@Louise O’Keeffe: you’re doing an amazing job. I also had to finish up in work to become full time carer to my son so I can appreciate how hard it is. Nobody knows their child’s complex needs better than their mother.
@Molehead: Thank you. I hope you son is doing well.
Honestly I don’t know how carers in these situations keep their sanity. It’s akin to minding a new born except it’s forever. I just couldn,’t do it. The gov need to provide better supports as these people are doing the work of three-four people.
Some of the clueless comments are why I hate carers week. To me, it’s not about carers at all, it’s an excuse for society to pat us on the head and say, “well aren’t you great, stong, super…” insert whatever word as a way to paint the carer as somehow more able for the role than the average joe. Then they don’t have to worry about supports, sure isn’t the carer so wonderful why would they need any? Meanwhile the same folks are thanking their lucky stars it’s not them and judging the carer from their position of privilege, before swiftly forgetting them completely until it’s time for another pat on the head. Carers aren’t superhuman. They are human and sometimes caring is far too much to expect from any human alone.
@Carol Oates: The comments I was refering to have now been removed.
@Carol Oates: I completely understand what you are saying. It is patronising. Real action by the government that improves the circumstances of carers and those they care for would be of better use.
@Carol Oates: Yes carers aren’t superhuman,they desperately need more supports from Government and HSE like I said yesterday and in particular suitable housing.I
I highlighted a case yesterday about Tracy and her disabled son who is due to have serious op soon but who is in inadequate housing for his disability and special needs.My comment was deleted yesterday so I’m highlighting Tracy’s story again today.Carers aren’t statistics, they’re human like you said working 24/7,they need and deserve proper supports,proper respite and proper housing!As a society we all should realise that not only is disability congenital but it can be acquired also at any time so we should be 100% behind carers and their needs.
It’s hard doing it with 2 of us here. I couldn’t imagine doing it solo. You are doing an amazing job and hopefully by highlighting the inadequacies within the system for both those with disabilities and the families that care for them we can get the support so desperately needed.
It’s a shame that the only way we seem to get heard is if we can get mainstream media to print the personal details of our private lives. It’s horrible.
I hope you get some support and help Louise you deserve it.
@Samantha Kenny: Thank you samantha x
I totally admire you. You are an amazing mother. God bless you snd your little girl and boy.
@Butterfly: Thank you.
@Butterfly: Thank you.
Services provided by carers save the Irish government €4 billion per year.
Everyone needs to digest that, and then ask our government where that savings is being invested. Then we need to ask why none of it is being invested into improving the lives of those being cared for and doing the caring.
just curious does your son receive support. I’m wondering does the NF association do some sort of support group for siblings. I also have NF1.
@Jackie&Rhum: Not at the moment. I work closely with the NFA so it is something I could suggest. It really would be a great thing for siblings. Thank you x
Seems like a certain persons comments were deleted along with all the responses including my own. i must say to whoever controls detetes, you don’t actually have to wrap us carers up in cotton wool and protect us you know. we are stronger than that. If we needed sheltering from people questioning us we wouldn’t be the parents we need to be! So thanks but no thanks. I for one am willing to answer questions.
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