People say: 'I must visit Helen' - they never come
A diagnosis of early-onset Alzheimer's completely changed the life of Helen Rochford-Brennan. She spoke to Donal Lynch
It is a night that will forever stay with Helen Rochford-Brennan. It was two years ago and she was alone in Galway in the loneliest hour of her life. A specialist there had just diagnosed the then 62-year-old with early onset Alzheimer's and for the mother-of-one it was nothing short of a death knell.
"You just think to yourself: what about all my hopes and dreams for the future? What about my retirement and all the plans I'd made - to go travelling, to be with my family in old age, to do voluntary work. I wanted to work until I was 65. I knew that this would take all of that away."
In tears she walked back to the car. "I was just crying onto the steering wheel", she tells me. "And I thought: what now?"
Instead of making the 140km journey back home to Sligo, Helen decided to drive to the grotto at Knock.
"I'm not a very religious person, although I am spiritual," she says. "I just had to go somewhere. I had to calm myself down. I was in a panic. I just think now of that poor priest who met me. What he must have made of me. I was distraught, I was talking so quickly. He was a real comfort to me."
Eventually, she made her way home where she was met by her husband, Sean. "He was just so upset when I told him", she says now.
"My only son Martin was doing his [bar] exams in Blackhall. He was very upset too. I am one of nine so there was a big extended family to tell, but I waited a few weeks before telling them. Some of them were a little sceptical, they said 'oh, for God's sake, that's just age' but I explained to them it wasn't that. It was much worse than the usual slowdown of ageing."
Helen had always led an active life. She worked in disability services in Sligo and served on a number of state boards. Up to four years before the diagnosis she had begun to notice unusual lapses in memory and cognitive function. She could not get through her working plan for the day. She'd be in a meeting and words would fail her.
"The worst of all was something I had newly learned or something I had read that I was expected to remember. The words wouldn't come out", she says. "My staff knew something was wrong."
Because Alzheimer's is officially considered a disease of old age in Ireland, both diagnosis and access to palliative care are often difficult for those with early onset of the illness. Helen went to two doctors and got two different opinions. One said she had Alzheimer's, the other disagreed. "I went with the guy who had the more positive picture, naturally enough", she says. "In hindsight that was a mistake." For the next few years she "coasted along" and tried to do the best at her job. The finality of diagnosis changed all that.
"I fell apart, to be quite honest," she says. "I had a year after the diagnosis that felt like 10 years. I cried, I looked out the window every day, I did absolutely nothing. I sat in front of a keyboard and tried to write letters but the words wouldn't come. I didn't want to see anybody. My GP said keep walking, keep active as long as you can. I did the worst thing of all - I went on the internet. I read that if you are diagnosed you really only have seven years to live. I knew my son would have read that too and that broke my heart."
A doctor in Galway had told her she should get involved with local support groups and one night she drove to a meeting in Mayo. "I walked in and I nearly died. They were all very advanced. It was very frightening for me."
Eventually she was put in touch with Prof Ian Robertson in Trinity College, one of the national experts in the area of neurodegeneration, and became involved in fundraising for research through the Alzheimer's Society Of Ireland. "That was very important to me because I do feel that research is the way forward. We need to understand the brain better. I think it's also crucially important that the Government and the people in charge of our health services accept that this is not just an illness of old age. It can affect people who are in their thirties, forties and fifties. There is nothing there for those people at the moment and we believe that many of them go undiagnosed."
Helen has now become more accepting of her condition, but she tells me she still feels an enormous sense of "loss and depression."
"One of the side effects I notice is that I get very little sleep", Helen explains. "I would have about two hours sleep a night. But maybe the biggest side effect of all is communication.
"I used to talk about a range of different things with my husband and a lot of that is gone. That's been extremely hard on him. I was on committees but somebody else replaced me. They don't come to see you. Sean would meet people and they say I must come and see Helen but they never come. Loneliness is the hardest part of all."