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'You're giving up everything and they don't want to get on with you. It was hard to bite my lip and keep going'

Over 180,000 people in Ireland are currently or have been carers for a family member or partner with dementia.

shutterstock_546225745 Source: Shutterstock/Ocskay Bence

IT WAS QUITE depressing, waking up every morning. It was real depression looking at it now. It was always just ‘How do I get through this day?’.

- Micheál Rowsome had to return from living in Berlin in 2013 to become a full-time carer for his mother, who suffers from dementia.

Micheál is just one of thousands caring for loved ones in Ireland.

There are over 55,000 people with dementia in Ireland currently. 63% of these people live at home and many receive full-time care from their loved ones.

Over 180,000 people in Ireland are currently or have been carers for a family member or partner with dementia, with many more providing support and care in other ways.

A new study by the Alzheimer Society of Ireland, ‘De-Stress’ looked into the health and well-being of family carers – in this case, the study looked specifically at spousal carers. It found that nearly half of all such carers spend all of their waking time looking after their spouse.

In light of the study, the Alzheimer Society is calling for more support to be given to carers.

“If we are serious about supporting people to live well and die in their chosen setting then we need to invest in quality services to support both carers and those being cared for,” Professor Sabina Brennan of Trinity College Dublin said.

Michaél spoke to TheJournal.ie to raise awareness of National Carers Week, which highlights the experiences of thousands of family carers across Ireland that look their family members.

“Obviously, I chose to come home and care for her and it was done out of love. But there were times when I’d be trying my best and she’d resist and resist and go against me,” Micheál said. The pressure had become too much for his father when he made the decision to return from Germany four years ago.

I would think ‘Why am I doing this? It’s driving me crazy’, because you’re giving up everything and the person doesn’t even want to get on with you. It was hard to bite my lip and keep going.

As dementia progresses, the changes become greater and the person will need more help. Most people are aware of the struggles those with dementia face, from memory loss and communication difficulties, to attention issues and confusion.

However, dementia carers face a long list of struggles themselves; from having to give up work, to dealing with stress, anxiety and depression.

Michaél and his family began to realise that something wasn’t right in 2012. At first they didn’t realise that it was dementia and Michaél explained that his mother was dismissive of her symptoms at first.

“When we did realise it was very difficult because there was nothing we could do as such. It’s one of these mystery diseases that you can’t cure,” he said.

As Michaél’s mother’s condition began to worsen, life in the Rowsome household became incredibly stressful.

“I was trying to keep my head in the sand but I had to come home at the end of 2013 because it was too much for my father who was caring for her. He ended up in hospital from it because it was so stressful.”

We started to see an intelligent woman, very articulate, very well read and full of energy unable to hold a conversation with her friends, unable to discuss simple things. Her anxiousness got worse and worse and fear was just a huge thing.

As her condition began to worsen and her memories began to fade, Michaél’s mother’s world got smaller and smaller. She began to rely on Michaél and his father more and more.

Her attention span became very fleeted. Now, she has a better recall of long-term memories than short-term. Micháel said that it was hard to figure out what’s going on in his mother’s mind because she can’t articulate her thoughts very well.

“Most of the time she isn’t aware of who I am. Sometimes there could be a flash when she does say ‘he’s my son’, but other times she wouldn’t know my name and would ask who I am,” he said.

Like many dementia carers across Ireland, looking after a loved one 24/7 began to take its toll on Michaél’s well-being.

It takes a toll on your spirit and your mental wellbeing. It was dark, especially over the winter when the weather was bad. It did put a strain on my relationship with my mum.

While Michaél made sure to head off to the gym a few times a week to try to unwind, and managed to get a couple of weekend getaways in throughout the past few years, he said that he was never able to switch off because he was always worrying about his father at home.

The ‘De-Stress’ study found that close to two out of every five people caring for a spouse with dementia suffers from some form of clinically significant depression.

Most carers (79%) said that they themselves provided the vast majority of care for their spouse.

The family received home help of up to five hours a week from the Alzheimer’s Society of Ireland, but there simply isn’t enough help out there for carers in Ireland, Michaél said.

I was at breaking point most of the time so I don’t know how other people deal with it who have less support from families and neighbours.

Care 

Just after last Christmas, the strain of caring for his mother became too much for Michaél and his father. They made the decision to request respite care and she went on a week’s care in April.

“We had a moment to breathe for the first time in years and we realised that we just couldn’t go back to the situation. That’s when we made the decision to keep her in residential care,” he said.

There was an upsetting period for the first while and then she settled in really well. She’s actually better off there. Her health and well-being is better and she has a routine where she feels safe. She’s more calm than she has been in years.

Each year over 4,000 people develop dementia in Ireland.

According to the Alzheimer’s Society of Ireland, early signs and symptoms of dementia can include:

  • Memory loss, particularly for recent events
  • Problems with language, difficulty finding the right word
  • Changes in mood and behaviour
  • Becoming confused in familiar surroundings or situations
  • Difficulty in following conversations, TV programmes or reading
  • Difficulty managing money and everyday tasks
  • Difficulty solving problems or doing puzzles
  • Loss of interest in hobbies and pastimes, lack of initiative to start something or go somewhere
  • Repeating a question or story several times without realising

This week is National Carers Week, which highlights the experiences of thousands of family carers across Ireland that look after their loved ones.

Read: ‘My greatest fear is she will outlive me’: Elderly carers in Ireland struggle for help

More: ‘I was a firefighter at the time so I had an idea of what the body was doing to me. It was telling me to cop on’

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