'We have three little kids...I have to be the strong one,' says Family Carer of the Year
Colette O'Shea (back row, right) and her family Kieran (back row, left), (Front row, left to right) Luke, Caoimhe and Haydn at their home in Lisnagry, Limerick. Picture: Brian Arthur
Black-and-white photos of smiling 16-year-olds sitting on the bench where they first met and where they would get engaged years later are now precious links to a life changed utterly.
Colette O’Shea met her husband Kieran when they were teenagers, out in Limerick city one afternoon with friends. “Not many couples have photos of the first time they laid eyes on each other,” Kieran used to say.
But those photos are now reminders of a life that is disappearing. Kieran, 47, was diagnosed with motor neurone disease and frontotemporal dementia in January and given up to two years to live.
But over the previous five years, he had slowly withdrawn from his family. He developed strange, repetitive behaviours and began to lose his empathy for others.
Frontotemporal dementia primarily affects the frontal and temporal lobes of the brain which shrink or atrophy. These areas of the brain are generally associated with personality, behaviour and language.
And Kieran’s personality and behaviour did change to such an extent that the once loving, attentive father was described by his children as having become just ‘a bystander in the house’ long before his diagnosis.
“He’s like a stranger in the house now. I hate to say that but that’s what the disease has done to him, it robs you of your personality,” Mrs O’Shea said.
“There’s not much left of the Kieran I knew five or six years ago. He’s completely changed. Before I had lots of plans for the future but now the world has become a smaller space."
The couple first met, aged 16, in 1992.
“I had gone into town with a group of my friends and he was with a group of his. One of his friends was a photographer for the local paper and Kieran had borrowed the camera off him and was snapping loads of pictures. We were walking by and I said 'that guy is very cheeky! Let’s go around the corner and see if he keeps taking our pictures.’ And he did!"
They dated for a short while, parted ways and then reconnected in 1996. They are married 27 years.
“Kieran was loving, understanding, you could talk to him about anything. He was my rock. He was my everything, and he was the most loving dad," Colette said. But five years ago, Colette started to notice strange little behavioural changes in her husband.
“He began to develop symptoms at 42. There were gradual changes – apathy, lack of motivation, loss of sympathy or empathy for others.
“He had a social withdrawal, he didn’t want to be around the kids or myself, he lost interest in hobbies that he loved. Our conversations got shorter and shorter. Now he says the odd sentence. He points to what he needs. The dementia makes him quite self-centred and emotionally distant.”
Kieran also started to display repetitive behaviours and started to hoard things.
“Sticks, like kindling sticks, would come home in carloads and end up in our garage. I wanted to get rid of them but he wouldn’t let me, he’d sneak them into the garage when I wasn’t looking in the boot of the car. Then he’d hoard broken computer parts but he’d never do anything with them.
“He’d say the same catchphrase over and over again, ‘roll over in the bed the little one said’, but he’d say it 20 or 30 times in the day. I thought it was odd but maybe he just liked that saying.
“He’d also experience false thoughts or delusions. He’d become very jealous. He thought that every time he went to bed the kids and myself would be having parties downstairs.”
The changes were gradual, Mrs O’Shea said, and she was also caring for their son who had become unwell so she had a distraction from the initially small but bizarre changes.
But one day they went to buy a birthday cake for their daughter and there was no money in her husband’s account. Kieran told her they had been scammed so Colette made an appointment with the bank to discuss it.
There, they were told that Kieran had spent almost €14,000 in less than three months on scam websites, wiping out their savings and their children’s college fund.
Last Christmas, Colette begged for an emergency appointment with a neurologist. “The secretary said there was a seven-month waiting list to see a neurologist, but I said, please, this man is changing before our eyes every few weeks, we’re really worried about him.”
They were given an appointment in January and Colette brought seven A4 pages on which she had written his symptoms. The neurologist confirmed her suspicions that he had frontotemporal dementia and said he also had motor neurone disease, both caused by the same genetic mutation.
Kieran did not understand, Colette said.
At that world-shaking consultation with the neurologist in January, Colette was also told that Kieran probably had just one-and-a-half to two years to live. “I went ‘what?!’ At the time Kieran was working and driving. I was in shock.
“But we have three little kids together, an eight-year-old, a 10-year-old and an 11-year-old, so I knew I had to pick myself up off the ground and get organised again. They only have me to turn to so I have to be the strong one and that’s what I’ve become.”
Dementia causes impulsive behaviour but it also causes him to get very restless, irritable and even aggressive, Colette said. She said that Kieran goes to bed at 6pm every evening but then wakes up throughout the night, sometimes getting up at 1am, pulling open the curtains and waking the children up ‘for school’.
“I’ve been open with the kids, I said ‘Dad has this, it isn’t good.’ “My younger kids said they don’t remember dad ever being normal. But we have lots of videos. It brings tears to my kids eyes when they listen back to a video and hear his voice.”
Kieran’s condition is genetic, Colette said, but they did not realise until his diagnosis. Kieran’s father died with dementia and Parkinsons in his early 60s and his grandfather died aged 72 with motor neurone disease.
Colette said:
Colette, who cares for Kieran and their son Luke, 11, who was diagnosed in 2018 with advanced Crohn’s disease, was recently chosen as Family Carer of the Year. Winning the award was “a bit like a dream,” Colette said. “It was wonderful for Kieran and the kids too.”
While Kieran’s dementia has impacted his personality and behaviour, motor neurone disease damages parts of the nervous system, leading to muscle weakness. His speech has deteriorated significantly over the past six weeks and he has difficulty swallowing.
Since his diagnosis, Colette has been amazed by the support that’s flooded forward for them. Although more State supports would help, she said that the team at Milford Care Centre, a hospice, nursing home and day centre charity in Limerick have been exceptionally supportive.
Although Kieran went into respite for the first time last week, he stayed just one night instead of five, repeatedly calling Colette to collect him. But he does have a male nurse who comes twice a week who looks after Kieran and gives Colette a much-needed break.
The Alzheimer’s Association has also been of huge support, and the local community has organised a GoFundMe campaign to help renovate the O’Shea’s home in Lisnagry, Co. Limerick, which needs to be modified for his condition.
“I’ve never known so many wonderful people. I’ve always been a really private person, so was Kieran. But with five years of living in a very chaotic and different way than it used to be, I had to let people know about the situation. I couldn’t do it on my own anymore.
“And the outpouring of support has been amazing and so uplifting as well. The donations, the prayers, the letters, the Mass cards.
“We’re all immensely appreciative of everyone’s love and we hope that one day when things improve, we’ll be able to pay it forward in the same way as all these wonderful people have done for us.”
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