Wednesday 17 July 2019

'I've gone to a place I could never have dreamed of' - Inspirational campaigner who has Alzheimer's disease

When Helen Rochford-Brennan realised she had Alzheimer's, she became very dispirited. However, she tells Joy Orpen, she then discovered that with understanding and good support, she could still lead a meaningful life

Helen Rochford Brennan. Photo: Frank McGrath
Helen Rochford Brennan. Photo: Frank McGrath

Helen Rochford-Brennan's diary is a mine of information. For example, recently, during the course of one month, she travelled to Dublin on numerous occasions. She also spent time in London, Paris, Switzerland and Brussels. Not bad for a woman in her 60s - a woman who also happens to have Alzheimer's disease.

So how on earth does someone with this particular form of dementia manage the day-to-day minutiae of life, let alone negotiate international airports to attend high-level conferences? The answer: with organisation and support. The practicalities and philosophies of this concept represent the newly emerging face of disability, which states that if disabilities are well managed and supported by the community, those living with them can continue to lead productive and meaningful lives. Helen is living proof that this is possible.

Helen, who is from Co Sligo, began her working life in the post office, but following a visit to her sister in the US, she decided to emigrate, and spent over a decade living in Ohio and Kentucky. She did so well professionally that she progressed to branch manager for her company.

While on a trip back to her ancestral home in Tubbercurry, Co Sligo, Helen met businessman Sean Brennan, who was visiting from London. An instant attraction led the couple to marry, and they settled in the UK. Four years later, their son, Martin, was born. When he was nine, the Brennans decided to relocate to Ireland. "He was an only child, while I was one of nine," Helen explains. "So his cousins here were many."

Very soon after their move to Ireland, Helen realised there was a lack of infrastructure, especially in relation to travel, in the western region, so she committed herself to campaigning with the Tubbercurry Chamber of Commerce, the Western Development Commission and West On Track. Helen also ran a successful B&B and restaurant business, and, with a friend, established an English-language school for Spanish students.

When she was 52, she enrolled at university to study community development and theology. That led to nine years managing a national disability services organisation.

Currently, Helen advocates for the rights of people living with dementia, particularly those with Alzheimer's. She does this in her capacity as a European representative, but it's her personal experience of Alzheimer's that gives her voice such intense clarity.

Things began to tilt out of kilter when she was just 57 years old. "I'd always been a great organiser," she explains. "But then came a time when I couldn't organise myself at work at all. My son or my husband would ask me to do something for them, and I would completely forget."

Initially, Helen managed to hide the cracks by becoming a mistress of disguise. "People with Alzheimer's get very good at covering up [their mistakes] and that really confuses people," she explains. It took years to get a formal diagnosis of Alzheimer's.

"One doctor would say yes, it was Alzheimer's; another would say no, that I was forgetful because I was doing too much as a mother, businesswoman and campaigner," Helen says, adding, "I was finally diagnosed in 2012 when I was 61. I don't remember how I told my husband and son, but I do remember the terrible pain of it. There are still no services for people like me, although there are some services for people who are more advanced."

Helen gave up her job long before she ever got the official diagnosis, and that still grieves her. She believes she should have been advised to ask for a job that was less stressful. Instead, she went into a deep decline and hardly spoke to anyone for 10 months. Fortunately, a geriatrician, recognising that Helen urgently needed social and intellectual stimulation, advised her to join the Alzheimer Society of Ireland (ASI). And that proved to be a lifesaver.

Helen then signed up for a joint research initiative involving Trinity College and the ASI, and, later, the Irish Dementia Working Group, into developing and implementing interventions for people in the early stages of dementia. That proved to be the catalyst for much more. After that, Helen threw herself wholeheartedly into any initiative that was likely to provide a better understanding of what it means to live with a disability; any initiative that was likely to bring about change; and any initiative that would ultimately result in better living conditions for people with disabilities, especially those living with dementia.

To this end, Helen has been a "guinea pig" in many research projects, here and abroad. She attends conferences around the world, she gives talks, and listens to talks. She contributes to papers, she appears in other people's books and she loves every second of this new life of hers.

Currently, she is chairperson of the European Working Group of People with Dementia, and is the group's nominee to the Board of Alzheimer Europe; she is a former chair of the Irish Dementia Working Group, which is supported by the ASI.

So, how does she manage? "I keep two diaries near me at all the time. I also have white boards, and make lists of things to do and reminders. When I am in Ireland, I stick to a routine: get up; go walking - it clears my head; check my emails; then housework," Helen explains. "I work closely with the team at ASI if I have to make a speech on behalf of the Irish Dementia Working Group; otherwise, I liaise with Alzheimer Europe.

"When I am preparing for a meeting, I have to read and re-read the agenda and the notes, hoping against hope that I'll remember some of it."

When she's travelling, Helen has lists of things to take, including chargers, shoes and glasses. She negotiates the complexities of modern travel thanks to Carmel Geoghegan, who voluntarily accompanies her to the European Parliament and other seats of international governance. Helen also gets a lot of support from Alzheimer Europe. "They do amazing research work and make my travels possible," she says.

And what advice does she have for someone facing a diagnosis of dementia? "It's a different life, but it's still a good life. Don't be afraid to say you have a problem," she says. "Just because I have a cognitive impairment, doesn't mean I can't function. I've gone from thinking my life was over, to a place that I could never have dreamed of. Because of Alzheimer's, I've addressed royalty, governments, the European Parliament, world health organisations and global pharma companies.

"My message is this: please do not lose your voice to dementia."

For more information, contact the Alzheimer National Helpline run by ASI, tel: (1800) 341-341, see alzheimer.ie, or email: helpline@alzheimer.ie

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