‘I am happy to be my son’s carer, but I need support’

Almost 190,000 Irish people care for loved ones in their homes. Whether it’s an elderly relative, a child with special needs or a young person looking after their parent, the role is the same.

Often on call 24 hours a day, they regularly endure both physical and emotional exhaustion to ensure their loved ones are fed, washed, get exercise and are cared for to the best of their abilities. And while they give their all, every day, many have ailments of their own.

A recent report by researchers at the department of psychology at the University of Limerick has shown a 10 per cent increased prevalence of depression in parents of children with disorders such as ADHD, autism and dyspraxia compared with parents of children with no developmental issues.

The study, which was part of the Growing Up in Ireland longitudinal project, also revealed that while 15 per cent of the participating parents of children with disabilities were classified as having depression, fewer than half of those were receiving the relevant treatment. The study included one- and two-parent families.

Catherine Cox of the Carers Association says this sector of society is often overlooked, and people in a caring role have little time left to look after their own health and wellbeing. "It is worrying but not surprising to note that while parents are suffering from depression, many are not receiving the treatment they require," she says.

“This may be because of financial difficulties preventing them attending a GP or simply because they feel guilty that they have to seek help as there is still stigma attached to mental health issues.

“We would support a call to classify caregiving as a major public health concern,” says Cox, “as we are at the coalface on a daily basis and see firsthand the strain that our members are under.”

Margaret Stratford has five children. Her youngest, John (16), has severe learning difficulties and autism. Since her partner, Eddie, died three years ago, the 55 year old is feeling the strain of caring for her teenage son, who is already much taller and heavier than she is.

“John has autism and learning difficulties, and needs to be occupied every minute of the day,” she says.

“He is 17 stone and over 6ft tall, so physically he is a big man, but in every other way, he needs constant attention.

“He never sits down and I can’t leave him alone for a minute because he gets into everything and, if left unsupervised, is constantly eating. I have to invent little things for him to do all the time because if he isn’t busy, he gets bored, anxious and very cross. It’s incredibly wearing.”

Totally exhausted
As John's full-time carer, Stratford has little or no respite, despite the fact that when her husband was alive, she was allocated a few hours of home support a week. Now that she is on her own, she has been told she doesn't qualify for help any more.

“All my home-support hours were taken, so I have to fend for myself,” says the Kilkenny woman. “I am totally exhausted all the time and extremely stressed with trying to cope with everything, so I’m very down most of the time.

“I am currently being treated for fibromyalgia and high blood pressure, which my doctor thinks are related to stress, and I also have osteoporosis and COPD [chronic obstructive pulmonary disease], which add to the pressure and permanent tiredness.

“Everything in my life revolves around John. I spend four hours a day driving him to and from school, which is 25 miles away, but while this is very time-consuming, it’s better than the alternative, which is his non-stop need for attention during the weekend and over the school holidays.

“It’s hard for most people to realise how tiring that is,” she says.

“The only thing I can liken it to is when a toddler is on the go and demanding attention all the time – it’s completely exhausting. In most cases this is just a phase which will get better as they grow, but I am dealing with someone much bigger than me who is never going to grow out it.”

The mother-of-five is quick to point out that her family and friends do as much as they can to help, but she is reluctant to burden them too much. “Two of my daughters still live at home and they are a great help, but I feel guilty asking them to do too much as they have their own lives to lead,” she says.

“I am happy to be my son’s full-time carer, but I really need some support as my own health is suffering. Some days I get really down and I can’t see any light at the end of the tunnel.

“With all the stress and strain we live with on a daily basis, I am not surprised that so many of us are becoming depressed and seriously stressed.”

Care for the carer
"Leaving us to cope by ourselves might be a short-term solution for the Government but it's not going to be a long-term answer when we are not well enough to care for our children ourselves."

Cox agrees. “It is vital that interventions are found for the treatment of depression in these parents as evidence has shown depressive symptoms may worsen over time,” she says.

“We have seen families recently losing home-support for their children which is putting tremendous pressure on already stressed parents and families.

"It's in everyone's best interest to care for the carer and put in place systems that consider carers' mental and physical health needs as a priority."

The Carers Association provides support to 187,112 family carers across the country.
See carer sireland.com