Irish Dementia Working Group lobby is focusing on raising awareness of disease
From Sligo, Helen is chairwoman of the Irish Dementia Working Group lobby and a member of the monitoring group on the Government strategy. She also has dementia.
Depending on the moment, Helen Rochford Brennan’s husband calls her the “Helen that was” or the “Helen that is”, she explains, offering a glimpse of the day-to-day adjustments families make when a loved one is diagnosed with Alzheimer’s.
For Helen that was three years ago when she was 62. Her early-onset condition forced her to retire and to put aside plans to travel the world.
“Once you are diagnosed it is the most horrendous shock in the world, of course. It’s like any serious illness.
“However, in one way it is a relief because you think you are going crazy,” she explains.
“Then you have to tell your husband and then you have to tell your children and your immediate family.
“And it is very, very difficult because it is emotionally draining for them too because they don’t understand the illness any more than most of us, unless it’s in your family.”
Today, in place of many of the things she has had to let go, Helen has focused on advocacy for the illness and on raising awareness, noting homecare in particular.
“That is the aim for all of us who have this illness, we want to try and live at home as long as we can because, as they say in Scotland: there is no ward like home,” she says, explaining that much has changed since her diagnosis.
“[Now] it’s about having a simple plan for the day. You have a simple routine and you try and maybe spend some time doing some brain training on the computer.
“But we can live well with it. It’s a more simplified world but then at least we are here.”