'I have learned to live with Alzheimer’s, but it does not define me,’ says fighter Helen

Helen Rochford Brennan has always been a fighter, championing the cause of the underdog, be they refugees or people with a disability.

This time around, she’s fighting for herself and others like her.

It was in middle age that Helen, who lives in Tubbercurry, Co Sligo, with her husband Sean, felt something was not quite right. Used to being ultra-organised while leading a busy and, at times, hectic life, she kept forgetting things and could not understand why.

“I was having trouble in my mid 50s, but it wasn’t until I was 62 that I was diagnosed with early onset Alzheimer’s. I quickly found out that there are no services in Ireland for people under 65 with the condition.”

Though her short-term memory was affected, her fighting spirit was undiminished and she put it to good use on behalf of the Alzheimer Society of Ireland, helping to launch a charter of rights for people with dementia. The ground-breaking charter has been created to demonstrate the importance of a parity of rights for the 48,000 people with dementia in this country. Its focus is to ensure that Ireland ratifies the UN Convention on the Rights of People with Disabilities.

It will be launched today by Mary Robinson, former President of Ireland and former UN High Commissioner for Human Rights.

“Dementia has long been shrouded by stigma and there is still a very low level of awareness of the full demographic of those with the condition. There are people with young families living with it, there are children caring for parents with the condition, and there are older people in long-term care who are not receiving the supports they need. We are fighting for the rights of every single one of these people and their families, who are everyday fighting to stay in their homes, access services, and be treated with the dignity they deserve,” says Helen, who is chairperson of the ASI’s Irish Dementia Working Group.

What has challenged her most since dementia took hold is her difficulty with ordinary, everyday tasks.

“The inability to function to full capacity is very challenging and frustrating, especially when you have had a very good and active life. You go to a meeting and half way through you forget what happened at the start, or, you forget things that you do every day, like how to make the dinner.”

She resigned from her job as services co-ordinator with the Irish Wheelchair Association and also stopped a lot of her volunteer work.

“I went into the darkest depression.”

It also took its toll on her husband and her son, Mark, 30, who is a lawyer and lives in London.

“It was a heartbreak for us all, but you have to carry on.”

Help with doing that came from getting involved in the Alzheimer Society’s dementia working group and in cognitive rehabilitation, a programme that gives people with dementia the tools to cope.

“With that, I was able to get my white board, write everything down, [such as] who came to see me, who rang me. That gave me a bit of stability. Then I joined the working group.

My life will never be the same again. I have learned to live with Alzheimer’s, but it does not define who I am.”