'People would call us to say they'd found her in town' - brave son on the pain of his mother's (69) dementia
“She does have some moments. She’d recognise me and she’d know. Then she’d look at me again in the chair and say ‘where’s Michael?’.”
Micheál Rowsome’s mother Kate suffers from dementia to the extent that she is incontinent, her speech has been reduced to mumbles, and as well as memory loss, she suffers from anxiety and hypertension.
In 2014, Micheál was living in Berlin. He booked a trip home that Christmas to surprise his Mam and Dad, expecting a happy family celebration. But when he walked in the front door, he was met with the shock of seeing both his parents on the edge.
His mother was seriously ill with dementia, and his father, her carer and in his 80s, was sick from the burden of looking after her.
“I could see from my dad he wasn’t well, it had really taken a toll on him. He nearly died from the stress of it, he had to have a pacemaker put in. He just looked haggard. Usually he has a chirpy nature, but he was just very quiet. I can understand now how bad it was for him, it would just drain the life from you. He was taking that on his own shoulders, and he was in 80s.”
Kate (69), now lives in a HSE dementia-specific care unit, but two years ago Micheál decided to move home to care for his mother.
“When I came home that January and saw them it was just shocking because my dad was in hospital, he was in a bad way, and my mum was just losing the plot. It was pushing her to the edge, she was freaking out 24/7. It was an extremely hard time.”
"You might be up all night with her. She just wouldn’t go to bed, she’d be stressed out, and rambling around the house. You’d hear her up and around the house, searching around the house."
"Before we’d realise the door was unlocked, she’d be up and gone down the street and it could be raining, and you’d think I can’t take any more of it."
"Or people would ring and say they'd found her in town."
"She'd also have incontinence during the night and it just gets messy then," he explained.
"There was stuff she was doing and I’d realise she was only going in one direction. You’d never have a moments peace enough to feel all the pain and the loss that’s there. When you’re caring, it’s about getting the next thing done, the next thing done."
Dementia is an umbrella term for a range of conditions which cause damage to our brain. This damage affects memory, thinking, language and our ability to perform everyday tasks.
With Kate, Micheál explains, it caused her anxiety to flare up.
“[Dementia] seemed to push her anxiety levels and fear and doubts through the roof. It’s like dealing with a panic attack all the time, she’d be losing things, and hiding it and then freaking out that she was losing it.”
“She’d hide something and you’d take an hour to find it and then she’s hidden it again a few minutes later, and then you’d spend another hour finding it again.”
“She also had a fear that someone was going to attack her, fear that something bad was going to happen. She’d always had a fear that something was going to happen, but this came to the fore with this condition.”
Watching someone you love deteriorate with dementia, is often described as a long goodbye. Little by little, you realise your your loved oneis slipping away.
“I would have gone through a really dark time, I was just depressed, and drained really. Just really strung out. But in another way I’m a changed person, I learned a lot from it.”
“It is so heartbreaking. Even now as well, she’s in the home and she’s more calm because of the medication and she’s well cared for. But it’s heart breaking to see her mumbling away, and she’s incontinent sometimes.”
“Much as it’s been good for me to have the freedom, it is draining. Especially when we brought her in at first, I was cracking up, we couldn’t go near her to let her settle in. It’s like grieving for someone – realising she’ll never come back. And to have a sense of guilt: is this the only option? Is there something else I could have done?"
"I've been grieving for a while. They call it the long goodbye, going through the process. It’s like a multiple stage process."
“When I look back at photos of when she was my age, she was so fit, so full of energy. It’s just galling really to see it.”
“My mum had just so much energy and she was strong headed and strong willed, and she’d do the opposite of what you wanted her to do. She’d be running out the door into town, and that could be at all hours,” Micheál said.
Kate worked as a hairdresser up until her retirement at 65. But looking back, Micheál says there were signs that Kate had dementia as early as when she was in her fifties.
"She'd be forgetting numbers and she couldn’t do the hair colouring," he recalls. "It would have been coming on since she was in her mid to late fifties, looking back now."
"She doesn’t make any sense now. She’d have the odd clear word, but mostly she just mumbles. She's incontinent, fearful, and she put on a lot of weight when she would have been very fit and healthy and active. She started eating a lot of chocolate, it was strange to see her like that."
"I visited her yesterday and she’s not in great form at the moment. She seems to be down in the dumps. She’d be crying and saying I want to go home, but the home she longs for isn’t even her home with her children and her husband, it’s her old childhood home. It’s hard to take."
"It’s like a spiral, [the grief] was certainly very strong during the summer, and it’s kind of coming around again. It’s a spiral thing that’ll keep coming. It’s just so shocking what can happen to us."
If you have been affected by this article you can call the Alzheimer Society of Ireland's National Helpline on 1800 341 341.