Former politician Nora Owen used to cover for her husband in front of other people. She would say, “if Brian doesn’t follow what you’re saying, he’s a bit deaf”.
He was. But she knew it was more than that.
Dementia is an illness that creeps up on people and can be hard to talk about. “Brian didn’t change in his looks, but I didn’t want people looking at him funny. There is all that sense of your pride in him – and his pride and his sense of self.”
Even as a couple, they never explicitly discussed it. “We never talked about the term ‘dementia’,” she explains over a pot of a tea in a Co Dublin hotel. “I would say to Brian, ‘you’re forgetting a lot’ and he would say, ‘so are you’. He was comfortable. I think each person caring for a person with dementia has to work out what the right methodology is of coping with the condition. Sitting them down every 10 minutes and saying ‘you have dementia’ is not the way I did it, nor the way I think anybody should do it.”
His forgetfulness around their home in Malahide, Co Dublin, was the first sign to Nora, a former minister for justice and deputy leader of Fine Gael, that something was amiss. But “it takes a while to realise it’s not just ‘I forgot why I went upstairs’.”
[ Q&A: Alzheimer’s trial results offer hope for sufferers and their familiesOpens in new window ]
[ New drug found to slow Alzheimer’s hailed as ‘turning point’Opens in new window ]
An exchange one morning in their bedroom stands out in her memory.
“He was getting dressed and I said something like don’t forget to put on your socks and he turned and looked at me and I knew instantly he didn’t even understand what I had said. There was a vagueness that comes into the eyes.”
Then one day after Nora’s sister Joan and her husband had been over visiting, Joan rang to suggest that Brian was more than just forgetting. “I said, I know Joan but I have to get myself ready to go and get it [the diagnosis] done.”
By the time she contacted the GP, she was ready to acknowledge that “I think we are looking at dementia here”. He agreed and referred Brian to Beaumont Hospital, where an MRI showed evidence of mini-strokes, known as TIAs, and vascular dementia was diagnosed.
About 64,000 people are living in Ireland with dementia, which is an umbrella term for a range of conditions that cause damage to the brain. Approximately 11,000 cases are diagnosed each year, with Alzheimer’s being the most common type; others include vascular, Lewy body and frontotemporal dementia.
For Brian, who was diagnosed at the age of 72, the decline was very gradual, before his death 15 years later aged 87 in November 2020. Nora, who was 12 years younger and whose 20-year political career had ended in 2002 with the loss of her Dáil seat in Dublin North, was able to keep him at home until the last two years of his life.
Alzheimer’s Month
September is World Alzheimer’s Month and for the first time Nora is an ambassador for the Alzheimer’s Memory Walk, which takes place in more than 30 locations around Ireland on Sunday, September 24th. Not only is it an important fundraiser for the Alzheimer’s Society of Ireland, an organisation that she had contacted when caring for Brian, but the walks bring together families affected by dementia, with the wider community rallying around in support.
She has also worked in the past with the HSE’s Dementia: Understand Together initiative. Last March, its “dementia inclusive” community symbol was launched to raise awareness among organisations and services. Since then more than 200 new community champions have signed up, intent on facilitating people living with dementia and their families.
Nora’s first public comment about Brian’s dementia wasn’t planned but came during Miriam O’Callaghan’s RTÉ Radio 1 programme one Sunday morning in May 2017, when being interviewed along with her sister and niece, Mary and Tanya Banotti. “I didn’t know I was going to say it,” she recalls. “I hadn’t ever gone public about it.”
But she felt dementia was not being discussed openly and wanted to change that. In February of the following year, after a succession of requests from radio presenters, she chose Marian Finucane’s programme to speak more extensively about her life as a carer.
It’s a much harder job, or at least “a different kind of caring”, than caring for somebody whose full brain health is good but maybe in a wheelchair. Some 63 per cent of people with dementia live at home and she worries there is still a lack of understanding about how a partner of somebody with dementia is “literally in charge all the time”.
The responsibilities are all-consuming. “You just don’t know what somebody might do. I didn’t give him a chance to let me know what he might do, but you hear all the stories.”
Name and number
Although a good walker, Brian generally wasn’t a wanderer, but she still made sure he had her name and phone number in the pocket of any coat he was likely to wear.
Other tips she offers to carers include never hesitate to use toilets for the disabled, which she believes should not be signposted with just a picture of a wheelchair. “I know some people looked funny when I came out with Brian.” She also quietly swapped in non-alcoholic beers and wine for him on social occasions, believing it best to avoid any further brain-altering substances. They were fortunate as a couple, she acknowledges, to have private pensions that paid for carers to come into the home to give her some respite. It enabled her to keep up some of her voluntary committee work and two of their sons, Richard and Edward, who live nearby would help out to make sure, for instance, that she could still attend bridge evenings. Her advice to any carer is not to drop all outside activities if they can avoid it.
But, by 2018, the home situation was so difficult, she had to accept Brian needed 24-hour residential care. “It’s a huge job to get your head around: a. to find a nursing home, b. to look at the finances and c. to see if it would be something that would not cause too much stress to a person.”
The Newpark Care Centre in The Ward in north Co Dublin had been recommended to her and “as soon as I went to it, I liked it”. But when she got a call soon afterwards to say there was a room available for Brian, it was earlier than she was prepared for. Nora said she would take it, but added “please don’t ask me is it for ever as I will only burst into tears”.
The thought of Brian going into the centre proved to be worse than the reality. Her advice to any carer wrestling with the same dilemma is: “Try to make up your mind that you are not sending them into prison; you are sending them in where they can get the kind of care that you have reached the stage that you can’t really give them.”
He settled in happily. “The staff become their family; he knew them all and he would hold their hand.”
But, as for thousands of other families around the country with a loved one in a nursing home, Covid-19 brought a very hard period of fear and separation. When their eldest son, Vincent, came back from Thailand at the start of the pandemic, he decided to stay and so the family were together when Brian died.
‘My companion’
Dementia is known as the long goodbye. “You are really saying your goodbyes all the time,” she agrees. In the early stages, she was grieving “my companion, the man I loved and the man who helped me rear the children”.
They had met after Nora, a grandniece of Michael Collins, went, as a UCD science graduate, to work in the Bristol-Myers pharmaceutical company in the 1960s, where Brian was her boss. He was always a gentle man, she says, and his personality didn’t change over the course of his illness.
“In a way the grieving was nearly over by the time Brian died. I knew I was going to be able to cope.” She had already lived without him for two years, so wasn’t suddenly facing “the empty house syndrome”, she says. “I’d get bouts of sudden ‘oh God, where is he?’ but you were losing him all the time.”
Only 25 people were allowed at the funeral under the Covid rules in operation at the time, so did she feel cheated of the usual rituals? In normal circumstances she knows it would have been a huge funeral, but the intimate, family gathering was “very nice, it was just us”.
A few years before Brian went into the nursing home, the couple became involved with the dementia-friendly Forget Me Nots choir in Baldoyle. He was the real singer, she says, but carers have to go too.
“I joined it for him and that was wonderful” – so wonderful she still sings with them. Forget me not indeed.
