A sibling bond enables Shauna Tighe (17) to care for her special needs brother, Daniel (14), in ways that he won't allow their parents do.
For instance, she says, “he will let me cut his nails but he won’t let Mam and Dad near his nails. I can brush his teeth but if Mam tries to brush his teeth, he’ll hit her and scream. There are just certain things he will always let me do.”
After Daniel wakes Shauna about 6.45am every morning, it is she who will wash him while her mother does other things, such as get his bag ready, before he goes out the door to school at 8am. After a day at college and/or a shift in her part-time job at a pharmacy, she will also attend to him in the evening.
They lived their lives before Daniel and his arrival completely changed their lives
As his only sibling, Shauna reckons Daniel, who has a severe form of Sotos syndrome, sees her in a different way from their parents. His condition, a rare genetic disorder, has resulted in intellectual disability, “so he’s not able to do anything for himself really. He has epilepsy as well that causes seizures.”
Inevitably, the lives of Shauna, her mother, Sinéad, and father Keith, who works in security, revolve around Daniel’s needs. The parents worry about the impact that has on their daughter, who is now doing a pre-nursing course at a PLC, and she, in turn, thinks it’s harder for them. “They lived their lives before Daniel and his arrival completely changed their lives,” she points out, whereas for her, “I don’t know any different.”
Although Shauna’s contribution is vital for the welfare of Daniel, she never thought of herself as a carer until she won the 2018 Young Carer of the Year award, presented by Family Carers Ireland. “We’re just brother and sister like any brother and sister, even though it is different from an outside point of view,” she acknowledges. “It was just normal for me.”
He has really bad behaviour because he can't talk and when he can't communicate something, he will have a complete meltdown
The pandemic lockdowns compounded the challenges in their Tallaght home in Dublin, as was the case for all the other estimated 500,000 family carers around the country. Daniel’s behaviour deteriorated significantly when his school stopped abruptly and he was cut off from extended family. “He didn’t understand Covid was a thing,” says Shauna. “His behaviour got really bad because we were in the house all the time. He got fed up like everybody else.”
She recalls struggling to do remote lessons in her bedroom last year, with Daniel in the house. “He was trying to get up to my room to see me and mam was trying to keep him downstairs. He has really bad behaviour because he can’t talk and when he can’t communicate something, he will have a complete meltdown. I could hear him crying downstairs and I really wanted to go down and help, but at the same time I had to do school. It was kind of hard that way.”
Shauna is one of about 67,000 young carers under the age of 18, some as young as seven or eight, according to Family Carers Ireland. They may, like her, be helping care for a sibling or, in some cases, be the primary carer for a lone parent with mental or physical health difficulties, addiction or terminal illness.
Nineteen months into the pandemic and counting, family carers continue to be "the forgotten frontline workers", says Catherine Cox, head of communications and policy at Family Carers Ireland.
With no State registration system for family carers unlike, say, in the UK where they register with their local council, they could be regarded as living proof of the maxim “what is not counted does not count”. The only figure we have, she says, is that about 120,000 family carers get the annual carer’s support grant.
Registration system
Family Carers Ireland wants to start a proper registration system here. “Ideally we would like to look at setting up a national register for family carers but we could only do it working closely with GPs, public health nurses and health professionals,” says Cox.
She defines a family carer as someone who is giving additional support to a family member in their own home beyond what is needed by somebody without illness or care needs. “We talk of the ‘caring journey’; it can start as very light support and can develop over time, in some cases to 24/7 care.”
Lack of recognition by the State meant when Covid-19 hit, it was left to Family Carers Ireland to try to support this vital group of non-paid carers. The charity’s efforts were honoured by the awarding of a European Citizen’s Prize for 2020, which Cox received this November at the European Parliament in Brussels on behalf of the organisation.
MEPs, she says, acknowledged how family carers prop up our health services. “Without them, our health services, as bad as they are, would be far worse and probably collapse. To me the recognition of our organisation was really a nod to family carers and the work that they do.”
When the pandemic hit, she explains, "we went out and literally begged the corporate sector to help us, to help family carers. They really stepped up – Irish Life in particular. They gave us a huge pot of money, €350,000, to support family carers through Covid. Only for that we couldn't have done it." In normal times, about 80 per cent of the charity's funding comes through the Department of Health and HSE and the other 20 per cent it tries to fund raise.
I do think the State failed family carers throughout Covid, there is no doubt about that
In March 2020, when it was clear that family carers were not going to be prioritised for PPE, despite the fact that many are effectively doing frontline work, the charity sourced supplies itself. The living room of Cox’s Carlow home became a distribution hub for gloves, hand gels, masks and other equipment. Thanks to An Post, they were able to send out packages free “to about 3,500 family carers who really, really needed it over those first three months”.
The crisis fund set up for carers struggling through the pandemic “has put food on tables, oil in tanks”, she says. Other examples of practical help it provided are indicative of just how dark those days of lockdown were in some households.
In one case, bite-proof clothing was bought for a mother and bite-proof bedding for her adult daughter. This young woman had become so frustrated, Cox recalls, through losing day services, her occupational therapist, her physio, and speech and language therapist, “she was biting her mum, she was biting her bed clothes, pulling them apart, it was horrific – a really difficult case”.
They funded over-night nursing hours for another mother who couldn’t get cover and had to do it herself. “We paid for nurses to go in to allow her to sleep, so she could get up the next morning and continue caring.”
In another home, a “safe space” bed was funded for a man with Alzheimer’s who was suffering very disturbed nights. He slept much better in the new bed, and it also meant his carer could sleep too without worrying that he was going to fall out.
They supplied laptops to enable young carers to participate fully in home-schooling and, in some cases, even paid for grinds for those in their Leaving Cert year. Shauna, for one, believes it was only thanks to the funding she got for maths grinds that enabled her to get through that must-pass subject. They have also provided counselling for thousands over the past 18 months.
“I think the impact of Covid on the mental health as well as the physical health of family carers has been huge,” says Cox. “They were really left to their own devices; services supports closed down, schools closed down for some of the time, particularly those caring with a child or adult with intellectual disability – they lost everything. It was down to them to do it 24/7. So that emotional support was really, really important as well.
“I do think the State failed family carers throughout Covid, there is no doubt about that. But I think there is an opportunity for them to step up and support them now as we emerge from Covid.”
She is speaking the day after three online sessions were held to give carers the opportunity to “score” the Government on its performance on 18 promises made in the programme for government in relation to family carers. Not surprisingly, it doesn’t sound as if it will make happy reading for those in power when the results are published in December.
They didn’t come out great because a lot of the commitments have not been achieved, says Cox. “Some have gone backwards, some had initial progress, some had good progress; unfortunately none had been achieved in full.”
The commitment they want prioritised is the introduction of a carer’s guarantee, which should end the current “postcode lottery”, in that where you live determines what services you will or won’t get. “That would give a basket of services to family carers in the community when they need it,” such as training, respite and emotional support. “That is our big one; if we got that, it would certainly relieve some of the pressure.”
Yet, €2 million was allocated in last year’s budget towards the carer’s guarantee and not one cent of it has been seen or spent, Cox contends. “It is crucial that money is released and put into carer support.”
Future planning is also vital as the number of family carers is multiplying, with people living longer and our country’s demographics shifting. “One in eight people are family carers today; by 2030 that will be one in five people providing care.”
Covid has reinforced how the safest place to be cared for is in the home, “but family carers can’t do that on their own, they need support”, she stresses. Caring should be a shared responsibility, among extended family, the community and the State. “It shouldn’t be down to one person, but it often is.”
Take the crisis of lack of respite, particularly residential respite, that has been exacerbated by the pandemic. It is one measure that can make or break the continuation of family care, yet “now it is almost non-existent for a lot of families”, Cox asserts.
It certainly is for the Tighe family, as Shauna explains. A centre where Daniel used to go for respite has said it is no longer equipped to take him since he started having bad epileptic seizures three years ago and there is no prospect of finding residential respite elsewhere any time soon.
He sleeps downstairs at home and one of the family has to be near him just in case he has a seizure. She says her mum and dad have only been able to share a bed the odd time over the past year, as when Shauna is in college or going to work, they won’t let her take her turn downstairs. “They don’t want me being tired going into college, so they don’t sleep together ordinarily.”
Her parents get out together occasionally “if they are not too tired”, remarks Shauna, because she is available to stay with Daniel. But the three of them never get out together. “Even at my matches [at Thomas Davis GAA club] it would be just my mam or my dad, not my mam and dad.”
His behaviour has improved since he went back to school
The resumption of school and routine, at least, has been a huge benefit for Daniel and, in turn, for the whole family. He receives a few hours of home care as well. “I think he is doing great now and his behaviour has improved since he went back to school. He’s way better now, way happier,” Shauna says. The family is back to the more “normal” challenges of being carers.
Shauna agrees her friends are “definitely” freer than her. If she’s not available to go out, she suspects people think she is just using caring for Daniel as an excuse. “Sometimes it’s just you’re too tired to go out even if you are free because you’ve had a hard day. It is harder to go out even if you have been at home all day; it’s different just sitting at home, and being at home caring all day,” she points out. It is also difficult to bring friends home.
“My mam and dad don’t mind me having anybody over but it’s kind of hard because in Daniel’s head he thinks everything is about him.” When people come to the house, he wants to be with them and will come up to her room to see what they’re doing – not taking no for an answer.
She has found it helpful meeting other young carers through Family Carers Ireland, which has just appointed two young carer officers to assist its young carers’ manager. “Sometimes when you’re with your own friends, you’d feel a bit isolated. It’s not their fault but no one understands fully unless they are in the same situation. So it’s nice to be around people who fully understand.”
However, Shauna bats away any suggestion that she ever gets down about her family’s situation by saying that she is so grateful that Daniel is in good health.
But, she adds: “If we had respite even once a month, it would help so, so much. It is little things like that that are overlooked by the Government. They can say they don’t have funding but it’s not they don’t have it, it’s just they don’t prioritise it.”
A Family Carers Ireland freephone helpline on 1800 240724, is run by volunteers, 9am-10pm, and the Samaritans provide back-up support out of those hours.
Young carers by numbers
- 13.3 per cent of children aged 10-17 report being in a caring role
- 37.5 per cent of young carers report being bullied
- 15.9 per cent say they had bullied others
- 51.3 per cent of young carers report an injury that required medical attention in the past 12 months
- 24.6 per cent report going to school or bed hungry (compared with 17.9 of non-carer peers)
- Source: Health Behaviour in School-aged Children (HBSC) data from 2018
