There are approximately 500,000 people in Ireland caring for others in their families. These people caring for family members are estimated to save the state around €20 billion every year. The vital, but often overlooked, work done by family carers is celebrated annually at the Family Carer of the Year awards. The 2022 award was won by Colette O’Shea from Limerick, who is a full-time carer for her husband, Kieran. Colette told Miriam O’Callaghan that Kieran’s illness came on gradually and she started wondering why his personality seemed to be changing:

"It was very gradual, you know. Nothing that you’d think, 'Oh my god, there’s something seriously wrong with this man.’ It was behavioural changes. He started, like, hoarding things. Collecting things. He worked in a company, a Currys PCWorld, for nearly 17 years and I have to admit, he was one of the only people who never missed a day of work until he got sick."

Kieran started bringing things home, things like kindling sticks from a skip. He’d arrive with carloads of sticks, filling the garage with them. Broken computer parts were next. Then Kieran became obsessed with charging his phone to 100%. He grew distant from their children. It got to the stage where Colette started thinking that they were drifting apart. The first physical symptom she noticed was when Kieran’s voice started sounding like he was slurring. He insisted that he couldn’t hear it, though. The turning point came when they went to buy a birthday cake for their daughter’s seventh birthday:

"Now Kieran would have got paid, I suppose, four days beforehand and we went to pay for it and there was no money in his account. And this went on for a few months and I was saying, ‘What’s happening? This is very strange,’ I said and he said, ‘Oh, we’re being scammed.’"

When she went to the bank to investigate, Colette discovered that the family’s savings had been wiped out, along with four or five months of Kieran’s wages. Turns out Kieran had been the victim of a scam website that targets vulnerable people. But this being before his diagnosis, Colette didn’t realise he was a vulnerable person. And Kieran didn’t even remember doing it. That was the point where Colette decided she needed Kieran to be seen by a neurologist. When they got an appointment, Colette brought with her a lengthy letter, detailing her husband’s symptoms and gave it to the neurologist:

"He read it to himself and then he looked at me and said, ‘What do you think he has?’ And I thought, ‘Well, that’s a strange question to ask, you know. You’re the doctor – tell us.’ And I’d done a lot of research on his symptoms. A lot within a few months. And I said, ‘I think it’s frontotemporal dementia.’ And he nodded and he said, ‘Yes, it is,’ he said, ‘but it’s not just that,’ he said, ‘he has a movement disorder too – MND, Motor Neurone Disease.’ And I was shocked."

The prognosis was not good: the neurologist told Colette that cases like Kieran’s typically see patients surviving 5-7 years after diagnosis – but Kieran had had symptoms for 5 years already. Kieran was there in the room with Colette and the neurologist, but when Colette asked him if he knew what had happened, he smiled and wanted to go for coffee:

"In his head, he’s in a very good space, a very happy space. The dementia’s been a blessing and a curse. It’s a curse for everyone who’s around him, but it’s a blessing for him because it’s blunted, I suppose, what really he has."

Kieran isn’t the only reason that Colette is a full-time carer. Her 11-year-old son, Luke was diagnosed with complex Crohn’s Disease when he was 6:

"He’s got a lot of complications with it. Quite recently he was fitted with – about 8 months ago – with a stoma bag, so it’s been huge, you know, He’s had to get his head around all this and as well his dad, you know. Just devastating for them because, over the years, dad was the sort of person they would go to. Dad would help with the homework, dad would sit down and play with them. He was the main man, you know, the good guy, like, so it’s a huge change for him. ‘Cause like, it almost feels like a slow sort of grieving process we’re going through because we’re kind of losing Kieran bit by bit, week by week, he’s changing the whole time."

As well as dealing with the extremely challenging illnesses that her husband and son suffer from, Colette has to cope with serious financial problems as well, not least of which is the condition of the house they took over from her parents, as she explained to Miriam:

"When we took it on, it was obviously a big thing and the years went by and Kieran was always, I suppose, quite a low wage for his job, so we never got much of a chance to do much. But we kept our head above water and we got on with it. But it’s just since his diagnosis as well and for the last 5 years since the symptoms, he just hasn’t been able to do anything and the house has run more and more into disrepair."

Despite everything Colette has to deal with, she somehow manages to keep smiling and remain upbeat. She told Miriam that she loves her family and she doesn't see anything exceptional in what she’s doing. The judges of the Family Carer of the Year award – and anyone listening to Colette telling her story – might beg to differ.

You can hear Miriam’s full conversation with the remarkable Colette O’Shea by going here.

A GoFundMe page has been set up to raise money for vital alteration works needed on Colette and Kieran’s house to suit Kieran’s deteriorating health. You can visit the page and make a donation by going here.