Weathering the storm

INTERVIEW: Joe English, who skippered Ireland's first entry in the Whitbread round the world yacht race, is no longer a professional sailor. Not by choice, but because he has early-onset Alzheimer's. RÓISÍN INGLE talks to Joe and his wife April about the challenges they face

FORMER PROFESSIONAL sailor Joe English has the weathered complexion of a man who spent most of his life outdoors. His long absences from the family home, often in far-flung places, were a feature of family life for his wife April and their three children. “That was the way our life was and that was fine, there were plenty of other people in the same boat,” says April, smiling in the kitchen of their home in the sailing village of Crosshaven, Co Cork. “It was the same if you were married to someone in a shipping company or an oil firm. You just adapted to life without him and then you adapted to his presence again when he came back from sailing.”

Three years ago Joe, then 51, was diagnosed with early onset dementia and the family had to learn to adapt to his very different absences. They first noticed something was wrong when in his late 40s he began retelling stories he had told just minutes before. He was uncharacteristically forgetful, would stop mid sentence uncertain of his place in the anecdote or of what he had planned to say next.

“We thought it was depression,” explains April. “You don’t think of something like Alzheimer’s at that young age.” But depression was ruled out at an early stage, as was dementia initially. It took another year before he was finally diagnosed with the incurable brain disease. At the time he was the youngest person in the country with the illness.

Around 4,000 people under 65 live with early onset dementia in Ireland and they struggle with a set of challenges not faced by older people with the disease. Many, like Joe, are at the top of their careers when the illness hits. They can also have the pressures of a mortgage and the financial and emotional demands of children who are of college- or school-going age.

They are often physically fit even as the disease robs them of their memory and turns straightforward tasks such as telling the time or tying their shoelaces, into an ordeal. The diagnosis can also take much longer because of the lack of awareness of the disease. As the symptoms grow more pronounced they have to give up work, as Joe did in 2006, in his case leaving a career he loved and one that in many ways defined him. Before the diagnosis he would have expected to have many years of professional sailing left in him.

"It knocked me back," says Joe in a quiet voice, sitting at the kitchen table in his house, which looks out over the Owenabue River where hundreds of yachts are moored in the water next to what he says is the world's oldest yacht club. The house in Crosshaven is crammed with sailing memorabilia, souvenirs picked up over decades of racing all over the world. Joe is in the elite of Irish sailors. He was the skipper of NCB Ireland, this country's first entry in the Whitbread round the world yacht race, in 1989. "You did most of the big races didn't you?" coaxes April. "All of them, yeah," he says. April helps fill the blanks while also giving her husband the space to speak for himself.

At one point Joe interjects to correct April’s recollection of an incident in his career. “I don’t forget the sailing stuff,” he says, his voice betraying mild annoyance. “That stays with me.” And April laughs warmly then. She says they laugh a lot together at how the disease has changed their relationship. In the early days, they promised each other that they wouldn’t stop laughing no matter how bad things got.

Joe talks about his races in a steady voice, sometimes with long gaps between sentences. He remembers victories in the world championships, the Whitbread experience, the holidays sailing off France and Spain with the family.

He can recall all the early successes when he was a young man, such as the time he went to Dublin and won the junior helmsman championship, much to the irritation of one particular judge. “She said ‘you’ve ruined everything’. She had wanted someone from Dublin to win,” says Joe, smiling at the vivid memory.

April was a sailing widow, with Joe away for much of the year. Their eldest child Aoife was born just before he left to skipper the round-the-world race. He heard the news about the birth across the radio during pre-race training off the coast of Arklow. Four years later they had twins, two boys, Conor and Robbie. Robbie is a keen sailor. “You feel the loss, of the mentor Joe could have been but can’t be to him now. But Joe sees that Robbie shares his passion for sailing and that has been of some comfort.”

The experience has been isolating. The couple were once key figures in the socially vibrant Irish sailing community but “most of that just dried up for us”, says April. Still, Joe has “a good bunch” of friends, who take him out sailing or for weekend trips. April has made contact with other families in the same position. “It’s good to be able to pick up the phone and talk to people who understand,” she says.

“Everything has changed, so you have to create a whole new world around it.” Joe’s days used to be mapped out in a series of post-it notes stuck on the fridge, reminders of mundanities, eating his dinner or turning off the taps or the lights, mindful of their mounting electricity bills. As his condition deteriorated, the post-its were replaced by a blackboard so the reminders can all be in one place. It’s a daily challenge just to navigate the geography of his own home.

Inevitably, without Joe’s wage coming in, money is tight. As well as being Joe’s carer, April works part time for a few hours a week. He has a small disability pension, while April is entitled to a modest carer’s allowance. State care provision is minimal. In response to their situation, some friends started the Joe English Trust, which raises funds for his care. It currently pays for private home help, which has relieved some of the day-to-day burden on the family. Joe is also part of an Intervene health-management programme run through a local pharmacy, which keeps them up to date with new research and treatments.

According to April, the couple will “in the not too distant future” have to start looking at nursing homes for when Joe’s needs become greater. They feel strongly that there is a lack of services and support for the younger community of people with Alzheimer’s. “There’s lots going on but it’s all geared towards older people,” says April.

Many dementia services have a minimum age requirement of 65 and so Joe cannot access them. Even when services are made available they often do not meet the needs of a younger person. A spokeswoman for the Alzheimer Society of Ireland said that there are no specialist services geared to meet the needs of people with younger onset dementia: “In addition to the needs of the person, the needs of the family members of people with younger onset dementia are different and specific. Some people have children who need help and support dealing with the changes they see in their parent. This is also true for parents who see an adult child develop the condition . . . for the partner there are financial stress and worries, and the overall responsibility for daily life can take a huge toll, not to mention the impact of the disease on their relationship.”

The society does not apply an age restriction on services and has recently developed two drop-in centres in Dublin for people with younger on-set dementia. It is also co-ordinating a family carer support group for people living with the illness, which is open to families living anywhere in Ireland. The society is also campaigning for an increase in State services.

Joe doesn’t think much of traditional over-65 services; he has done his research and feels he doesn’t fit in. “That’s not me,” he says. “I need to keep active.” Is he angry about his situation? “I do find it difficult. It was one of those things that just turned everything upside down. I just never thought about it happening. I am frustrated and angry at times, especially when I try to do something that I was able to do before. That gets me infuriated because you go back in your head to the time when you could do it.”

He takes his dog Boo, a friendly cocker spaniel, for long walks twice a day. “He is the most walked dog in Ireland, sometimes I think he even guides Joe home,” says April. For Joe, there is a certain level of acceptance now alongside the frustration of the illness. “These things happen, you just have to get on with it,” he says.

Alzheimer Tea Day is on May 5th; you can host one, large or small, at home or at work, to raise funds for carers. See teaday.ie or tel: 1800-719820. To donate to the Joe English Trust, see joeenglishtrust.com