Music, laughter and the ability to lie – life as a carer for those with dementia

Monica is usually there for the duration, from shortly after the diagnosis until the end. She becomes an integral part of the patient’s life, a friend and a confidante as much as a carer. These relationships can last years, more than a decade, and they often leave a lasting legacy.

“You try to be their friend, we don’t mention dementia to them, I treat them the same as I would be anybody,” she says. “I gain their trust and often they might speak to me about things they might not be comfortable sharing with their family, and then I see it to the end, most of the time.”

In her 22 years of working as a carer for The Alzheimer’s Society of Ireland (ASI) Monica has had to learn how to cope with loss, but she has also learned that the journey is about so much more than the ending. 

“I don’t think about the end when I start with a new client, we just think about the now and take it day to day, it’s only when I’ve been with a client for years and I see the progression getting worse that I start to think about it,” she says. “It can be tough towards the end because we would have been there for a long time with them. You do become like family, a lot of the houses I visit the door is just left open for me, and it can be tough at the end because you’re gone, once that person is gone, you’re gone.”

Her day-to-day duties are as varied as they are complex, with no two clients ever the same. Music plays a big part, as does fashion and beauty.

“Every client is different, every day is different, there’s a different challenge every day, you don’t know what to expect,” Monica says. “Today I had two clients, one was really interesting; she’s a real lady and likes getting her nails done, she loves Joe Dolan. I know them all now, from Daniel O’Donnell to Joe to Elvis Presley. The second person I was doing up her lunches for the week, washing her hair. One lady loves George Michael, I wouldn’t be a fan but I try to get into it.

“I had a lady in Wexford, I do miss her, she was an artist, and she was brilliant, so into everything, she would have done a lot of work in Knock with the statues there, and she showed me how to do that, so now I have all my own little bits at home that she helped me to make. She was great.”

However, not every pairing is as successful, on a very rare occasion Monica and the person she has been assigned to won’t hit it off. 

"Once,” she replies when asked whether she ever had to request to switch over a client. “And it was simply because it was affecting my other clients, I was coming out of there so stressed that I was bringing it into other houses, I couldn’t focus. I was with them for nine months, another carer went in and it was fine. Sometimes you might just remind them of someone they didn’t like when they were younger, imagine going to school with someone you hated and then this person comes into your house who’s the image of them. They’d say ‘I don’t want them in my house’. That’s just the way it is.”

Having been with the ASI for 22 years Monica’s passion for her job is unquestioned, she readily admits to loving what she does, to embracing whatever challenges come her way. But on those rare occasions when she does feel the strain she will seek help within the ASI rather than burden those closest to her.

“I don’t take it home with me, you can’t, you can’t do this job and take it home with you. If I’m having a tough day and it’s been really difficult I’ll ring Mary (Conroy Thoms, ASI Homecare Coordinator). I can vent to Mary, I don’t have to go home with it. There is a lot of joy and happiness too though, some houses you can go into and you could be after getting up in the morning thinking ‘oh god’ but then someone will say something and you’ll start laughing and that’s it.”

She may not have access to the type of technology used by those researching dementia and Alzheimer’s and may not come from a scientific background, but given her years of experience, years working on the frontline, Monica has seen enough to give an opinion on whether these conditions are becoming more prevalent.

“It’s increasing for sure, when I started with ASI I had five hours a week, there was me and two other carers and that covered the whole of Wexford. The need wasn’t there. It’s built over the years and now I do 26 hours a week,” she says. 

And she also believes the causes are as much psychological as physiological. 

“I’ve only got two male clients, it’s mostly women. And in my experience a lot of women would have had some trauma in their life at some point, whether it was the loss of a child or their husband dying. They had something terrible happen to them. It’s that sudden trauma. When you’re with someone as long as we tend to be you learn a little bit about their history and their lives, when you see women in their early sixties with dementia you sense there’s definitely been a trauma there somewhere. When a mother loses a child that’s something they can’t recover from. The stress of that alone causes huge problems.”

There’s something else which has come with experience, something she says is vital if you are to get along with those suffering from dementia and memory loss: The ability to lie. 

“You have to try and get into their head, be a big liar, you have to lie a lot, they might ask ‘when is my husband coming back?’ And he’s been dead 20 years. ‘Yeah, yeah, he won’t be long’, you’ll tell them.” she says sadly.