Tuesday 27 September 2016

'We cope with mum's dementia day by day'- Katie Moran on becoming her mum's carer at 23

Katie Moran has, along with her father and younger siblings, become her mother's carer at the age of 23. She tells our reporter what it's like living with Alzheimer's everyday

Áilín Quinlan

Published 03/05/2016 | 02:30

Katie Moran, 23, cares for her mother, Loretta, who has Alzheimer’s Photo: Damien Eagers
Katie Moran, 23, cares for her mother, Loretta, who has Alzheimer’s Photo: Damien Eagers

Katie Moran was just 18 when she first began to notice that something wasn't right with her beloved mum Loretta. During a family trip to Hong Kong six years ago, Katie started noticing how Loretta, then 54, seemed to lose her way from her hotel room to the lift so often - despite the fact that it was just two doors down the corridor.

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"Mum had had symptoms since I was 16, but we hadn't made the connection - we just put it down to anxiety and lack of attention," says Katie, recalling how Loretta had become increasingly 'forgetful', losing her way more frequently and forgetting to pack the children's school lunches.

It was difficult to grasp that something serious was afoot and Katie - now 23 and a research psychologist at Beaumont Hospital - recalls how Loretta had always been active and involved; she played sports and as a painter who also worked in stained glass, was very creative.

"Mum was so involved in our lives. She was always thinking about others. She was always doing little, sweet things, and there was always art and craft around the house. There was such sweetness and light around her," Katie recalls.

But that summer in Hong Kong was a turning point; the Morans were forced to accept that something was wrong.

"When we returned from Hong Kong, Mum went to the GP and had tests, and the results warranted further investigation."

Loretta was diagnosed with Alzheimer's disease in September of that year.

She did her best to keep up with her treasured art and yoga classes for a while, recalls Katie, but soon had to stop. Loretta also had to give up driving.

"She still did everything she could to be there for us. Even after her diagnosis, she surprised me on the day of my debs by hanging a big photo collage of my milestone life moments on the wall and accompanying me to the event," recalls Katie, who began to study psychology at UCD the following September.

She started to read up on dementia, she recalls, and became increasingly fascinated by the issues of cognition, memory and Alzheimer's disease. She kept notes and, during her reading, learned about the difficulty people with dementia experience with drawing shapes. One day she came home from college and asked Loretta to draw a star.

"Mum could only draw disconnected lines all over the page. This was a very visual sign of what was happening in her brain," says Katie, who, along with her father Dermot and two younger siblings, now cares for Loretta on a daily basis.

Nearly six years on from the original diagnosis, Loretta is today in an advanced state of Alzheimer's disease. "She has very little autonomy which means that as a family, and with the support of carers, we need to help her with everything from feeding to washing to putting her to bed."

For Loretta's children, this involves a huge role reversal. "We are kind of mothering Mum; as a family we are all taking care of Mum," says Katie, who explains that the family now has a special care roster for the evenings.

Carers assist Loretta during the day when the family is out, and in the evenings, Katie says, she and other family members will help Loretta eat her dinner, calm her if she becomes anxious and watch old musicals with her - Loretta loves Grease, Oklahoma and West Side Story.

Her loved ones sit and listen to old music with Loretta, who particularly enjoys songs by The Eagles or Fleetwood Mac, or watch light programmes on the TV.

Loretta generally goes to bed around 8.30pm. Each member of the family takes turns to bring her to the bedroom, help her change and stay with her until she falls asleep - Loretta can wake during the night, so somebody always needs to be there.

"It's really 24-hour monitoring," Katie explains, who is organising an Alzheimer's Tea Day at the family home in Stillorgan on Sunday next, May 8.

The Tea Day, which is supported by Medtronic, is the Alzheimer Society of Ireland's biggest annual fundraiser, and officially begins on Thursday, May 5.

Over the last two decades, Alzheimer's Tea Day has seen thousands of people host tea parties in their homes, offices and schools, raising vital funds for the ASI to provide essential support to the 48,000 people and 50,000 family carers who are living with dementia in this country.

Katie recalls how she and Loretta attended an Alzheimer's Tea Day together - the event was organised by a neighbour whose mother had Alzheimer's and it took place some years before Loretta herself was diagnosed with the condition.

"Mum could never have foreseen that she'd be fundraising for something that would impact on her life so intimately later on," says Katie.

The proceeds of the Tea Day - last year in the region of €400,000 was raised by the event - are used in a variety of ways by the Alzheimer's Society of Ireland. Chief executive Colette Kelleher says the money helps fund everything from running the society's mobile information service to its helpline and family career training.

"We get support from the HSE, but these donations help us bridge any shortfall."

The money also allows the organisation introduce new programmes such as cognitive stimulation therapy, which Kelleher describes as "a sort of workout for the brain."

The programme has proven very effective and the association wants to expand its availability.

"Funds raised through Tea Day helps to keep innovating and keep looking at new ideas, and keep up with development which can make life better for someone living with dementia," says Kelleher.

Meanwhile, the Morans have learned to take things step by step.

"You cannot think about the future. We adapt to each new symptom and new progression and take it day by day," says Katie, who plans to return to college next autumn to begin a PhD in cognitive ageing and dementia.

10 things you need to know about Alzheimer's

1 The number of people with dementia is expected to rise to 68,216 people by 2021 and to 132,000 people by 2041.

2 The majority of people with dementia (63pc) live at home in the community. Most people living with dementia are cared for by a family member and there are approximately 50,000 dementia family carers in Ireland.

3 The overall cost of dementia care in Ireland is just over €1.69 billion per annum; 48pc of this is attributable to family care; 43pc is accounted for by residential care; formal health and social care services contribute only 9pc to the total cost.

4 The Alzheimer Society of Ireland is the national leader in understanding and providing dementia-specific supports and services. Each year it provides more than one million hours of community-based dementia-specific care throughout Ireland.

5 Last year Alzheimer's Tea Day raised €400,000.

6 In cases where a younger person is diagnosed with the condition there are no supports designed to meet their needs.

7 There are 4,000 people under the age of 65 living with dementia in Ireland, many of whom have young families with specific needs. This year alone 11 people a day will develop the condition.

8 The ASI is a lifeline to people who need support, providing dementia advisers, social clubs, Alzheimer Cafés and respite - but it needs greater support.

9 Funds raised by Alzheimer's Tea Day helps to support vital lifelines for people such as day care, home care, family carer training and dementia advisers.

10 The Alzheimer Society of Ireland National Helpline is open six days a week, Monday to Friday 10am-5pm and Saturday 10am-4pm on 1800 341 341. Visit alzheimer.ie for more information.

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