The first time her father did not remember who she was, Norma Gill recalls asking her mother to not put him on the phone again.
“It was just so upsetting,” she said.
Her father, Harry, was diagnosed with dementia 13 years ago, a “very isolating disease”, she said, particularly for her mother whose “whole life stopped”.
“He’s her spouse, he’s the love of her life and he’s just not who he was,” she said.
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Ms Gill’s mother, Pauline, was his sole carer for more than a decade with Harry now in a step-down facility following months in hospital.
“He won’t be coming home so we’re looking at nursing homes currently,” she said.
Ms Gill said her family has been “very lucky” as his cardiovascular dementia had little effect on his personality for the most part.
“At the same time, it’s been very difficult because it’s the long goodbye,” she said.
Ms Gill said it is difficult to predict each day as the disease can cause significant deterioration in a short period, rather than a steady decline.
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Her father, who will turn 88 in August, no longer knows his children’s names but sometimes remembers Pauline’s.
“It’s extremely painful because I lost the dad that I had, the dad that I would have gone to for advice but I also lost my mam,” she said. “It’s almost impossible to not let it affect you the way it has affected her.”
She was speaking at the official opening of the Making Memories Café in Whitehall, Co Dublin, a community-led initiative between Dublin City Council, the HSE, the Irish Alzheimer Society, Larkhill & District Credit Union, and Whitehall Colmcille GAA Club.
The cafe, which is open to service users on the last Tuesday of each month, is run by local volunteers, many of whom have had family members affected by dementia or Alzheimer’s.
Ms Gill described the cafe, which had a soft launch in September, as a safe space to meet others with similar experiences, a space that made everything “a little less lonely” for her mother.
“On a day-to-day basis, you wouldn’t get to meet people like that,” she said, adding that the experience has been “powerful and special”.
Sitting in a booth with coffee and pastries on their table were Frank and Jackie Golden who will have been married for 56 years in June.
Mr Golden was diagnosed with Alzheimer’s five years ago. Despite this he published a book last year set in 1920s Dublin called The Irish Job.
The couple often attend similar cafes in Clontarf and Castleknock, with Frank saying it is an opportunity to discuss and reminisce.
When you’re retired and you get a dementia diagnosis, it’s very important to stimulate the person who has it with lots of new experience
— Jackie Golden
“It’s a great idea because, in the past, people like me would have been sitting in a chair in the corner of the house with people talking over their heads,” the 84-year-old said.
“Even now, in speaking with people of my generation, I’m learning things about the past that I didn’t know about,” he said, surrounded by others wearing name tags while a musician performed in the background.
An avid writer and reader, Mr Golden said he fights his condition by “taking an active interest in everything and keeping going”.
“Thanks be to God I have a very good personal secretary who keeps me busy,” he said, laughing.
“His social secretary,” Jackie interjected.
“When you’re retired and you get a dementia diagnosis, it’s very important to stimulate the person who has it with lots of new experiences and when you come to a cafe like this, you have your own network of friends,” said Jackie. “It’s very nice to meet people, at any age.”
Joanne Brennan, a dementia adviser with the Alzheimer Society of Ireland who helps to run a similar cafe in Kilbarrack, said there was a need in Whitehall and the surrounding areas for the cafe.
Those availing of the space can access peer support and education on various conditions and wider issues that might affect them.
“They come in in one way and they leave happy, relieved and they’ve made friends. It’s huge and it keeps them going for the month. They’re looking forward to coming back,” she said.
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