Úna Crawford O’Brien and her adorable little black dog, Bob, welcome Irish Country Living into her bright kitchen in her home in Rathgar, Dublin where she is already brewing us a coffee. Her walls are smattered with photographs spanning years of memories.

Over the past number of years, she has cared for her partner, veteran actor Bryan Murray, following his diagnosis with Alzheimer’s disease. The pair met on set of Fair City over 20 years ago, where over time a strong friendship grew into romance – both on and off screen. Last year, Bryan moved into residential care and, for the first time in her life, Úna found herself living alone.

“I had never lived on my own before,” she says. “And suddenly I’m on my own, dependent on other people.

“But in the last few months, I have begun to realise that I enjoy my own company. And it’s kind of a revelation because I was always doing and going for others.

“I’m still doing that. But now I have time to find myself a bit as well.”

Isolated

It is this experience she hopes to share at the upcoming Women & Agriculture conference, particularly to help those who may be caring for somebody themselves and feeling isolated by it.

“Very often people think they’re so alone and isolated, and then you talk to someone who has already gone through these things, and you realise that you’re not on your own,” she says.

Úna found becoming a full-time carer for Bryan fundamentally altered their relationship.

“When you are the 24-hour carer, it’s a colossal weight,” she says. “You have to be on top of everything, and you get forgotten. You get left behind.”

Once Bryan moved into residential care and Úna could see that he was safe and being well cared for, something changed between them.

“I go and visit him, and I can be me. I laugh with him, we joke. When he was at home, it was harder to do that.”

Looking back, she also recognises how determined she had been to keep managing, even when she knew she was struggling.

“Even though at the back of my head, I knew I couldn’t cope,” she says. “But I still was determined that I was going to manage. I was this strong woman, and I could do all these things myself. But I wasn’t.”

It is something she believes women especially are prone to – the expectation that they will work, care for families and somehow continue to hold everything together.

“We’ve always been brought up to be the person who can do everything,” she says.

Úna knew more about Alzheimer’s than many families encountering the disease for the first time. Her mother had Alzheimer’s and her grandmother had dementia.

But she says, “Living with it 24 hours a day is completely different from going to visit people and seeing them on occasions and dropping in.

“Very often, the person with dementia will put on a great face when somebody comes in to visit them. And the visitor goes away and says, ‘Aren’t they great?’”

The changes within a relationship can be heartbreaking. “With Bryan, he was my best friend, my partner, my lover. And suddenly he’s like a child. And that completely changes.”

Even when she slept, the responsibility followed her. “I would go to sleep and I’d wake up in the middle of the night and I’d be worrying. I’d be saying, did I write it down for him? Because he had notice boards to tell him what was happening.

“So you never escape it. It’s just an exhausting life.”

There were lighter moments too, and the couple developed their own ways of navigating Bryan’s difficulties with memory.

As Bryan’s Alzheimer’s progressed, he would sometimes ask Úna the names of people they met. Úna, who readily admits she isn’t great with names herself, says he came up with a nifty solution.

“I’d say, ‘I can’t remember them.’ He said, ‘Just call them darling.’

“So even when he was bad, he’d remember that. Just call them darling.”

Years later, it was the loss of that relationship as she had known it that Úna did not initially have time to process.

“When I was looking after him, when he was here, I was just so busy that I didn’t have time to miss the Bryan that I fell in love with, who was my friend.”

After Bryan moved into residential care, that changed.

She found herself remembering the man who had encouraged her into adventures, stage shows, television work and holidays.

“And he was gone. I suddenly went, I’m never getting that back.

“It’s a grief. It’s a huge grief. And I know they say it’s the long goodbye, but it really is.”

Residential care

Making the decision that Bryan should enter residential care was not easy. Úna put it off because she believed she should be able to continue caring for him herself.

“I didn’t want to do it. I put it off. I could cope. I could do this on my own. I couldn’t.”

Today, she says their relationship has improved. Bryan is settled in a safe environment, while Úna can visit him without carrying the responsibility for every aspect of his care.

“I had to make that decision, and I put it off for as long as possible,” she says. “In hindsight, I would say it’s better for the two of you.”

Making the decision was only the first hurdle – the process of arranging long-term care brought challenges of its own. Úna describes her experience of applying for the Fair Deal nursing home support scheme as “horrendous”, recalling the amount of financial information she had to produce and the stress of dealing with the process while already coping with Bryan’s illness.

Support during the caring years, however, made a significant difference. She had carers from the Alzheimer Society of Ireland (ASI) coming once a week for three hours – not a huge amount of time, she says, but time that became invaluable.

“You don’t realise until you get that break that you’re running on empty.”

For families living in rural Ireland, where services can be further away and isolation can compound the difficulties of caring, Úna recognises that accessing help may be even harder.

Her advice is to seek whatever assistance is available – from social services, public health nurses and other supports – and to be clear about what is happening at home.

“This is no joke. This is a very real thing,” she says. “Because it’s only when you live with it you realise how bad it is.”

Happy place

Since Bryan moved into residential care, Úna has gradually begun rediscovering parts of her own life.

She loves gardening, something that had become increasingly difficult while caring for Bryan because she worried about leaving him unattended even while she was outside. This summer, she has been able to return to it properly and proudly reports having her best crop of tomatoes yet. A sign in her garden reads: “This is my happy place.”

There have been other moments of happiness too, not least her granddaughter Georgia, or Gigi (as the almost five-year-old prefers to call herself), who is “just a joy”.

There is still grief, and Bryan is still very much part of Úna’s life. But there is also space now for Úna to be something other than a full-time carer. Looking back, her main message to others caring for a loved one is simple: ask for help, speak up and let people know when you are struggling.

“Make noise,” she says.

“That’s all I can say to people. Make noise.”

The Alzheimer Society of Ireland provides information, services and support for people living with dementia, their f amilies, and carers. The Alzheimer National Helpline is available on 1800 341 341. Find information on dementia, local services and supports at alzheimer.ie.