Celine Quinn faces up to dementia with the support of her faith, family and Alzheimer’s Society.
Celine Quinn, now 75, recalls just what it was like growing up as the oldest of 14 siblings in County Derry, Northern Ireland.
‘You were always looking after children, you spent your life rearing children,’ she says. ‘You just made the best of it – there was always plenty of company.’
This attitude of acceptance and picking out the positives has stayed with Celine following her dementia diagnosis in 2018. With the professional and personal support of those around her, she has been staying positive, keeping active and maintaining a sense of perspective.
Press the orange play button to hear this story in Celine's own words:
A busy household grew even further when Celine’s gran came to live with them. Later, when Celine married Pauric and had a child of her own, they all moved in too.
‘It's just the way things were in those days,’ says Celine. ‘When you got married, not everybody had a home.’
Celine has held a variety of jobs over the years, and chuckles as she reels off the list.
‘I’ve been on a market stall, run a pub, sold Tupperware, beauty products and insurance, and my last one was as a lollipop woman!’
Celine, who lives with Pauric, a retired joiner, in the village of Rasharkin in County Antrim, has always had a varied and active life. She used to play golf and still enjoys yoga, dancing, bingo, a craft club and a luncheon club. She has five children, 11 grandchildren and two great-grandchildren and describes herself as very family orientated.
‘You just thank God every day that you have great-grandchildren and the fun you have with them,’ she says. ‘Although when they leave, you're ready to lie down! But the fun we have is amazing, it makes life really worthwhile.’
Confusion and relief
Celine was diagnosed with Alzheimer’s disease around two years ago following tests and two MRI scans. These were done after a series of confusing and distressing experiences.
‘I’d been going through a terrible time,’ she says. ‘We were out in the car one day and I was seeing pink trees. Then after 10 minutes, I said, “I’ve been somewhere else.”
‘Another time, everybody had crossed the road, and I’d stopped in the middle, halfway over. The lights changed to green, people blew their horns but I didn't seem to be aware. That was a very frightening episode.’
‘I then knew there was something wrong and I could do something about it,’ says Celine.
Following this, her dementia diagnosis came as something of a relief.
‘I then knew there was something wrong and I could do something about it, which was to face up to it and work with it,’ says Celine.
‘Someone locally said, “How terrible, how dreadful,” but it's not like that. I said to her, “I know what I've got, I'm being looked after, and I’m learning to live with it.”’
Sense of perspective
Celine sometimes gets names and times wrong, and problems with her sense of direction mean she doesn’t go out much on her own. She’s keen to keep a sense of perspective despite this.
‘It doesn't matter if I call people by different names – some people who have Alzheimer’s don't even know their own grandchildren,’ she says.
‘I'm not special. I've got an illness but big deal, I can work with that. I've got my family, who have adapted to my way of life. I've got everything I could possibly need.’
Celine has several other conditions, including diabetes, arthritis, lupus and a heart complaint.
‘You don't take life for granted – you make the best of today,’ she says.
‘My biggest fear is not being able to help my family in future,’ says Celine.
Celine doesn’t particularly worry about her own future, but does admit to concerns over her ability to support her family in years to come.
‘I like to be needed and to be able to help when I am needed, that's always been me,’ she says. ‘My biggest fear is not being able to help my family in future, even down to Pauric.’
As well as finding the right kind of help and advice at the right time through Alzheimer’s Society, Celine has also provided support to the other people with dementia who she’s met through this.
‘When you're a housewife and a mother you do become invisible, I suppose,’ she says. ‘But this makes me feel important. I appreciate it.’
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Way of life
Celine also plays a key role in cross-community dementia-friendly church services in the Causeway area. Set up by volunteers in April, these services support people with dementia to continue practising their religion with fellow worshippers.
‘The church is a way of life for me,’ says Celine. ‘It’s the way you were brought up, you love your church. You also rely on your church. Four of my siblings have died but I had somebody to talk to, I wasn’t on my own.
‘Life is surrounded by your faith. There's no way you can describe it to anybody.’
‘I don’t question anyone’s beliefs – you accept people for who they are,’ says Celine.
The fact that the services bring people from different communities together is a bonus.
‘I don’t question anyone’s beliefs – you accept people for who they are, they’re just people,’ says Celine.
The services were established by church members after they attended a specialist dementia workshop arranged by Alzheimer’s Society. Prayers at the service usually relate to dementia, and the gatherings are relaxed so that attendees feel comfortable and can be themselves.
‘For the hymn the minister says, “You can sit, stand or get up and walk about,” it’s whatever you feel like doing,’ explains Celine.
Part of the service sees Celine read a psalm or other passage to the congregation, which has been very well received.
‘You see people’s faces, happy and smiling,’ she says. ‘It makes me feel very important.
‘You're reading to people with dementia or very poor hearing, so you have to speak properly and let them understand. Afterwards they'll say to me, “I understood every word you said there.”’
Comfort and acceptance
Celine’s involvement in the dementia-friendly church services has been supported by Adrian Friel and Aoife McMaster, Services Manager and Dementia Support Worker at the local Alzheimer’s Society.
‘When I arrive, Aoife gives me a hug at the door and I get a hug from Adrian – it’s just comforting,’ she says.
‘Don't shrug people off, they're here to help you,’ says Celine.
Celine advises other people affected by dementia to accept support from organisations such as Alzheimer’s Society.
‘Don't shrug people off, they're here to help you,’ she says.
Earlier this year, Celine appeared with Adrian on BBC Radio Ulster and BBC Radio Foyle to discuss the church services and her role within them. As ever, she takes positives from these public appearances.
‘Doing the reading or the radio helps me to realise that if I make a mistake or do something wrong it doesn’t matter, it’s not important,’ she says.
Celine draws on her faith and the strength and understanding of her family to live as well as possible with dementia.
‘I thank God every day for how lucky I am to be diagnosed, take the medication and just get on with it,’ she says.
‘I’ve accepted who I am, and people accept me for who I am.’