Following his dementia diagnosis at the age of just 60, Andy Paul in Deeside is determined to continue enjoying life.
Read this story in Welsh
‘My opinion of dementia was an old person with a walking stick in an old people’s home,’ says Andy Paul, who was diagnosed with Alzheimer’s in the summer of 2019, at the age of just 60.
Having had his own perception of the condition challenged, Andy now wants to change how other people view dementia as well.
‘I think it’s sad that you’ve got to know someone with dementia before you look into it. There just isn’t the awareness there,’ says Andy, who has given talks at universities and an Alzheimer’s Society conference.
Although he’s realistic about how dementia develops, he has an upbeat approach to making the most of life while he can.
‘You might have been dealt bad blows, but you’ve got to pick yourself up and dust yourself off,’ he says.
‘Before dementia, I was always laughing and joking, and I’m still the same.
‘Getting down and depressed only adds to the problem. That’s why I try to stay positive.’
Press the orange play button to hear Andy’s story in his own words:
Andy, now 63, was born in Knaresborough, North Yorkshire, but moved many times while growing up, as his father was in the RAF.
‘We lived in seven or eight places all over Britain, and I’ve got vague memories of living in Singapore when I was very young,’ he says.
‘When I was nine or 10, we moved to Cyprus for three years. I saw some really good times there – we lived less than half a mile from the beach.’
His dad’s last posting was at what was then known as RAF Sealand in Flintshire, north-east Wales, and Andy still lives in nearby Deeside.
However, his Yorkshire roots are firmly on show through his love for Leeds United.
‘I had a season ticket in the 80s and followed them home and away, all around the country. They weren’t doing so well, but if it’s in you, it’s in you,’ says Andy, who also enjoyed the ‘banter and rivalry’ of playing for and later managing a local pub football team.
After leaving school with no qualifications, Andy tried to get a job with British Aerospace, but they wouldn’t offer him an apprenticeship in case his family moved again.
He joined British Steel, later becoming a bricklayer, heavy goods driver and warehouse foreman. A self-taught plumber, plasterer and painter and decorator, he most recently worked in construction, doing groundwork and machine driving.
‘I used to frequent the local pubs. That’s a posh word for me – I used to drink in them!’ says Andy, who describes himself as a social animal.
‘In the pub you could get offered work and start literally the next day.’
To the point
In early 2019, Andy noticed that he was having the occasional problem remembering things, but put it down to getting older.
That changed when he forgot his daughter’s birthday until reminded by his ex-wife.
‘That’s when I realised something wasn’t right and booked a GP appointment,’ he says.
The doctor referred Andy to the memory clinic, where he struggled with some of the tests.
‘They give you a name and address, then prompt you for it later, but I couldn’t remember it,’ he says.
‘They also asked me to draw a clock. I drew a round circle and put all the numbers in, but I couldn’t remember where number 12 went.’
Following a brain scan at a local hospital, Andy returned to the memory clinic for the results.
‘I said to them, “I want you to be straight to the point with me, don’t pussyfoot around.” She said, “You’ve got Alzheimer’s disease.”
‘I think for about 30 seconds I was a bit horrified, but I didn’t dwell on self-pity.’
Andy’s biggest concern was being forced to give up his driving licence, which he later got back on a year-by-year basis after paying for a special assessment.
‘My brother, who died recently, wouldn’t have been able to have his medical treatment if I didn't have a licence,’ he says.
‘It makes the bereavement easier, to know that I was there to help him when he was ill.’
As well as memory problems, which include forgetting people’s names and dates, Andy also now struggles with spelling.
‘I’m fully aware of where I’ve deteriorated. To me, the word “said” is s-e-d.
‘I don’t think you can push dementia under the carpet,’ he says, but adds, ‘There’s always a way to try and deal with it as best you can.
‘For names, I go through the alphabet. I also use technology like predictive text, Alexa, Google Nest. Although it can be hard to get some of them to work, they’re a massive help.’
Following his diagnosis, Andy moved quickly to arrange lasting power of attorney, his will and a funeral plan.
‘It was hard telling my kids that I had dementia, but with those three things in place, we can now get on with our lives,’ he says.
‘Eventually I may have to go into a home, but I’ll try and be as independent as possible until that day comes.
‘I’ve been asked about extra help, but I’m living a normal life at the moment – I wash, I cook for myself.’
Andy was visited regularly over six months by a young-onset dementia nurse, which he found very helpful.
‘My first questions were, “How long have I got? How long before I deteriorate?” But she said she couldn’t answer, because no two people are the same,’ he says.
Andy has also been supported by Society staff David Allmark, Dementia Support Worker, and Maris Stewart-Parker, Dementia Friendly Communities Officer.
‘Alzheimer’s Society helped me massively,’ he says. ‘David contacted me within two weeks of my diagnosis.
‘He is a lovely, tremendous, caring guy. Any concerns I had, he made it clear that he was here to help.
‘He gave good advice and put me on to Age Connects, who helped me with benefit forms.
‘It’s reassuring that someone like him is at the end of the phone. He’s been awesome – I’ll always be indebted to him.’
Andy has got involved with our work, including opening and closing our Alzheimer’s Society Cymru conference in Wrexham earlier this year.
‘Dementia professionals are helpful, but I get more help from hearing other people’s experiences,’ says Andy, who shared his story with delegates.
He also gives talks about his experiences of dementia to university students, and was filmed as part of a project from his local health board.
‘I do really gain great pleasure from helping people,’ says Andy, who feels that dementia awareness can be lacking among the general public.
‘A friend saw me and crossed the road, so I chased after him. He said, “Sorry, I didn’t know what to say.” So I put him in the picture and made him wise.’
As he continues to adapt to the challenges of dementia, Andy is determined to remain realistic yet positive about his situation, no matter what the future may hold.
‘If I was to sit here and feel sorry for myself, I think I would deteriorate mentally,’ he says.
‘Dementia will beat me in the end, I’m not in denial, but it won’t beat me in the short term.
‘I don’t dwell on the end, but I might have limited time, so I’m going to enjoy life like I always have.’
How can you help?
£58 could provide a Dementia Voice session for people with dementia to influence our and others’ work.