Dealing with the reality of being a carer

Joan Higgins lives outside Claremorris, Co Mayo and cares for her adult son John* (not his real name) who resides in the family home.

The 31-year-old, who is currently in hospital following his third suicide attempt, was diagnosed with paranoid schitzophrenia about 10 years ago.

“He doesn’t think he has mental health difficulties, therefore he doesn’t take his medication. He takes it for a while and then he relapses. He has had more than 11 hospital admissions – most of which were involuntary,” says Joan, who is married to James.

Joan’s role as a carer largely involves helping her soncope with hallucinations as well as seeking professional help for him when he is unwell. He sees a psychistrist every three months when he is at home.

Over the years the mother-of-three has found it difficult to get help for him.

“He’d be very distressed . . . but sometimes GPs, or even psychiatrists or mental health nurses would come out and they’d think he was okay; that he wasn’t as bad as I said he was.

“I wouldn’t be taken seriously because he was able to present as very well,” says Joan, who works part-time as a family peer support worker, helping other families of people with mental health difficulties.

John’s condition has deteriorated since his first suicide attempt more than four years ago and last year he experienced visions on an almost daily basis.

Battle

“This past year was especially difficult. The impact on me was to feel mentally and physically exhausted. Accessing the services is very difficult. It feels like an never-ending battle.

“His life has been hell. Particularly at night it was very bad. We’d go to bed and after about an hour or two he’d start shouting, ‘Get away from me.’ He was terrified.

“We’d have to get up and tell him that he was safe and to calm him down. If I asked mental health professionals to call out for him, he wouldn’t engage with them. He’d say; ‘That didn’t happen.’

“It got bad back in January [2015] and then it just got slowly worse. It was particularly bad in the summer; it was every night.

“For the first time ever, last summer I got him to go to A&E with me. When we got there – on three separate occasions in August – we were sent home. They thought he was okay.”

John has had a number of hospital admissions since the end of August and was most recently involuntarily detained in December. It was at this point that Joan hit a wall and her physical and mental exhaustion got even worse.

“For the first time ever I cried when the doctor came to involuntarily detain him. I just couldn’t take it anymore and I kind of lost hope for him for the first time ever. But it’s back again. I’m hopeful he will be alright.

“I just feel I was completely burned out. I’m still kind of tired at the moment. I wouldn’t have as much energy as I used to. I do try my best to look after myself, but I find it very hard to sleep.

“He is in my mind morning, noon, night and has been for years . . . worrying about him . . . [that] he’s a danger to himself mostly.”

Family Carers Ireland estimates that there are more than 200,000 people caring for family members at home, including those caring for older persons, for children with special needs and for loved ones at the end of life.

"Burn-out is most definitely an issue for many carers," says spokeswoman for Family Carers Ireland, Catherine Cox.

A 2008 survey of family carers by the College of Psychiatry of Ireland and the Carers’ Association found that more than half of carers were physically and mentally drained by their role, with 71 per cent spending more than 50 hours per week caring, while more than 50 per cent had been diagnosed with a significant mental health difficulty.

Causes of ill health

The types of caring tasks most reported to cause ill health were dealing with verbal/emotional abuse, coping with bizarre/inconsistent behaviour and getting up at night.

Cox says the main difficulties facing carers include lack of supports such as home-help hours, poor and fragmented mental health services and lack of respite care (in home and residential).

“Respite is vital for carers’ health and wellbeing, and enables carers to recharge their batteries. Research shows that carers’ own mental health can be far better maintained when they have access to respite,” she says.

According to the medical director at St Patrick's Mental Health Services and clinical professor of psychiatry at Trinity College, Dublin, Prof Jim Lucey, burn-out is a phenomenon that is experienced by people under extreme and prolonged stress.

They find a deterioration in the quality of their work, are exhausted and feel that what they are doing is “pointless”.

The professor of psychiatry says carers don’t seem to burn out quite in the same way as, for example, people who are working in health organisations sometimes do.

“The reason for that is the person who is caring for their husband, their daughter, their son, one on one, has, what we call ‘congruence’, between their ambitions and intentions, and the person’s welfare. Once that’s lost, then you have a real problem,” he says.

“The way to support carers is to give them the ability to continue to care. If you undermine them, they will become burned out as they will feel there is no support for that ambition. It’s the sense that they are undermined and undervalued.

“The army of carers throughout the country is really sustaining our economy because if these people stopped doing their work, it would be an enormous cost, both personally and financially, to the country.

“We’ve talked about community care, but if we don’t care for the community that’s doing the caring, than the community cannot care.”

Change in mindset

The professor of psychiatry says he thinks a change in mindset is needed.

“In other words . . . quibbling over the handrail of the stairs is foolish. This is money well spent. The carer is looking for some support, some value in what they do, some recognition of the importance to us all of the fact that we are caring for each other.

“The battling bears down on the carer and the battling burns them out because it says to them, ‘I’m doing this on my own, it’s not valued and I’ve got to fight for everything.’ And that is the experience that many carers have.”

Lucey says respite is “absolutely” important for carers.

“Look at the cost efficiency of respite. Respite supports somebody in the community. The alternative is the carer breaks down, the caring is not done and, in the short term, if the carer can’t do it, you end up having the person who is being cared for in a hospital bed.

“I don’t think there is any point in appealing to managers or governments’ goodwill. Let’s appeal to their cost understanding – their bottom line.

“The bottom line is carers are an army of unpaid healthworkers who do a great deal for our society and they need to be valued.”

Tips for carers

1 Value your role as a carer Carers need to start saying, "I am a carer and I value my role; I don't need anybody else's value."

2 Look after yourself There is an enormous amount of self-care that carers need to do in order to continue doing the great work they are doing. Tell people if you need a break and involve the rest of the family. Even an hour-long break in the day really makes the other hours bearable.

3 Exercise A break to exercise can clear your head and make you feel physically stronger and better able to cope.

4 Know your warning signs If you are finding yourself extremely exhausted (that you can’t do what you used to be able to do in the sense of continuing to carry the burden), or if the physical and mental burden of the person you are caring for is increasing, you need to recognise that. You need to stop and take stock.

However, if you start saying this is pointless, that’s when you really have to take stock, because it’s not pointless.

We have to value the caring. Once you start feeling it’s pointless you may be burning out.

By Prof Jim Lucey