“The immediate response you get from people when you say you’re a carer is, ‘What company do you work for?’ ” says Pat O’Mahony. Since 1998, the 53-year-old has been caring full time for his wife, Margaret, who has post-polio syndrome. He is sitting around a table with seven other local men at the Carers Association’s Cork centre, talking about the assumptions they have faced over many years.
In the 2006 census, 38 per cent of those in the State who identified themselves as carers were male, a total of 60,703 people. (The figures for 2011 will be released by the CSO in November.) They are a group whose voices are rarely heard.
“In one way, it’s not in a man’s nature to do this,” O’Mahony says. “I do it for the simple reason that Margaret is the person I chose to take care of in marriage. She’s my wife. She had a disability when I married her. Then post-polio syndrome kicked in. Every muscle in her body is slowly dying. She’s gone from being able to hold a full cup of tea to half a cup of tea. She spends 90 per cent of her time in a bed or a chair.”
In the 14 years O’Mahony has been looking after his wife, his world has contracted. “You lose all your friends over time. You lose your contacts, people calling to your home, having time for others – it all goes. Then you have to cope with a mixture of insecurity and clinginess from the person you’re caring for. Margaret will say things like, ‘Why are you still with me?’ And there’s a fear that if I was gone, who would help her then?
“If they’re having a bad day, no matter how much you love the person, it’s hard. Small things become big things over time. You’re their arms and legs. For a lot of carers who are at home, there is no routine. Every day brings different demands, and you can’t ever switch off.”
O’Mahony uses Skype and internet chat forums to keep in touch with his friends. Even so, it can be months at a time between visits to the computer. “You end up getting very isolated, and you end up in bouts of depression yourself. It’s like I’m hidden in a burrow at home, and I only get out of the burrow every now and then. It’s a big downer on your own health. And the bureaucracy is hard to take, the red tape. You might as well be talking to someone from Mars as these health professionals sometimes.”
The Carers Association staffs 16 resource centres around the country. We’re in the one on Tuckey Street in Cork, where a sunny reception room has armchairs, cups of tea and a consistent welcome. For the past two years, a support group of up to 10 Cork-based male carers have gathered here about five times a year to share their experiences.
Three or four of them also drop in to the centre almost every morning for tea, a chat and moral support in a community where they can share their thoughts and fears with each other.
O’Mahony is one of the morning regulars, as is Pat Kelly. The 69-year-old former carer looked after his parents, Molly and John Joe, full time for a total of 24 years, after surgery and through cancer and stroke. Like O’Mahony, he found some aspects of the care particularly hard. “No man wants to admit they change nappies on an adult, on their parent,” Kelly says. “Some of the things I’d have been doing for Mam, it didn’t feel right doing them as a man. But you have do it.”
His mother died in 1998 and his father in 2009. In the latter part of his father’s life, Kelly would care for him for four weeks, then have a fortnight’s respite.
Kelly never married. “As a single male carer, you lose all your social skills. I am naturally introverted, but I got more so over the years.”
At one point he says, “Nobody ever asks how the carer is doing, only other carers.” The others agree. “People always asked, ‘How’s Mam?’ or, ‘How’s Dad?’ but never, ‘How are you?’ ”
He is still getting over the emptiness he felt after the death of his parents. “After Dad died, even though I was linked in to lots of services, I never got a single call from anyone in the authorities, or anyone at all coming to my door, or wanting to know how I was doing.”
He says the support he received at Tuckey Street helped him though a crucial time. “I was contemplating suicide,” he says. “I would not be here without the Carers Association. They have given me great confidence. Every morning now, I put on my best clothes, as if Im going to Mass, and I come in here for a chat. It gets me out of bed every day.”
Collectively and separately, the men talk of the love that motivates them to keep going, and of relentless stress, worry and guilt, of the toll on their own mental and physical health, and of the continual and exhausting frustration of trying to find out what help, support or financial assistance is available through the State, as every case is different, and resources keep shrinking.
Besides O’Mahony and Kelly, there are six other men in the room. Three of the eight cry over the morning as they tell their stories.
Tim O’Callaghan, who is 61, is also a former carer. Pat Pearse, who is 77, and Declan McDonnell, who is 66, are caring for their wives. McDonnell gave up his job to look after his wife, Mary, who has had lupus for 16 years. “In all my years of being a carer, I’d say maybe two people asked me how I was coping,” he says. “And what people never talk about is the loss of the whole physical-contact side of things. You lose all that as well.”
Tim Daly, who is 60, has been caring for his brother James, who has had a stroke, for the past six years. “My brother couldn’t manage otherwise. I couldn’t see anyone else looking after him as good as I could.”
Michael O’Brien is a 54-year-old who has taken on the full-time care of his mother, who is in the early stage of Alzheimer’s. “Circumstances made me available. I lost my job in construction. It’s a dead industry for the next 10 to 15 years. With the agreement of my wife, I made the decision to be my mother’s full-time carer. I get a great deal of satisfaction from it, but I’m only a year into it.”
Bertie O’Mahony, who is 68, shares the care of his adult daughter Marion, who has cerebral palsy, with his wife, Barbara. “We’re always worried about what’s going to happen to her when we’re gone.”
Each man has his own worries about his ability to cope. But they are all certain of one thing about their role. “We don’t have qualifications, degrees or white coats. We’re not so-called professionals. But in each of our individual cases, we are the experts on what our loved ones need,” says Pat Kelly, to the vocal agreement of all.
