On February 24 last year Patsy Duffy turned 57. Less than a fortnight later, on March 7, the popular Magherafelt businessman died from Early Onset Dementia, having lost his ability to walk and talk in the three years since his diagnosis.
Now his widow Janette and his four daughters, Tanya (36), who is married to Stephen McGeehan and has three children, Shea (7), Eva (5), Mia (2); Aisling (35), who is married to Robbie Bremner and is due to have their first baby tomorrow, Lisa (31) and Roisin (27) are planning a memorial benefit in his name in Titanic Belfast on March 7, 2014 – the second anniversary of his death – in aid of Alzheimer's charities.
Forget Me Not, The Patsy Duffy Memorial Benefit, aims to raise a much needed £50,000 for research and to build awareness about this often misunderstood and incurable disease, widely recognised by specialists as one of the greatest medical challenges of our generation.
Lisa: 'It robbed him of his mind and future'
Patsy's daughter Lisa (31) is an actress who gave up her fledgling career in London to help care for him. She now runs and teaches in her own drama group, Bright Young Things, and recently filmed a short drama on dementia as part of an educational documentary, Small Victories, for the NHS. She says:
My precious daddy was always fit and healthy. He was a successful business and family man, a fanatical Man United supporter and all-round sports fan with a boundless lust for life, until one day he began to lose his memory, then his mind.
Then slowly his body began to stop working too, until he finally passed away, with us, his four doting daughters and devoted wife of 36 years, at his bedside.
We had to endure a long, slow, painful goodbye over three years, a journey which is almost impossible to explain.
Dementia robbed us of a kind, funny, bitterly loyal and loving friend, son, grandfather, father and husband. It also robbed him of dignity, quality of life, his mind and his future.
For us it was a blessing that he wasn't aware of what was happening to him. From start to finish our house was full of laughter. We'd be in his bedroom dancing and singing the Wild Rover for ages just to get a laugh out of him – that would keep you going for days.
The first sign we noticed was daddy getting into the car and driving to Belfast for no reason, and not knowing how he got there. For half a second you'd notice his eyes clouding over when you asked him what was going on, then he couldn't explain.
The confusion got worse; he'd leave his car keys in the fridge and so on, that sort of thing. The doctor just couldn't diagnose him but we were determined to find out what was wrong with him – that's the type of us, we don't take no for an answer and the lack of answers about his symptoms was hugely frustrating.
We were very much on our own. It was only through our own research that we found someone here with answers. We saw Fiona Phillips on a TV programme talking about Alzheimer's and phoned her office, and through them we came across Professor Passmore, an expert in dementia at Queen's University.
We would have been very happy to take daddy to America for research trials or whatever, but Professor Passmore confirmed what we feared – that the onset of his disease had been too rapid and it was too late for that.
Daddy was diagnosed with Frontal Lobe Dementia, the most aggressive kind. It's the most prominent one in younger people and there's no cure. He was on a train that wasn't going to stop. It was a case of making him as comfortable as possible and trying to have fun with him.
We took strength from each other and tried to stay positive. We'd always put daddy on a pedestal – we're completely daddy's girls and always wanted to make him proud. At the start of his illness he went through a period of lethargy. He just sort of bowed out of life and we thought it was depression. He was still a successful man going about his business but his lust for life had dulled.
We had to beg for brain scans – it all comes down to money. When the scans came back clear the doctors said he was just going through a bad patch but we feared otherwise. That's the thing about dementia – often nothing shows up.
After he was eventually diagnosed, three years before he died, we had cars revamped for him and had his bedroom fully equipped to hospital standard. He couldn't walk or talk but his eyes would follow you everywhere and we'd chat away endlessly to him. He was still our dad and the head of the household, and we'd bring him to restaurants, even though he couldn't talk or eat solids, just to he would still be part of it.
We were brought up Catholic and that was very important to him. He was an active parishioner. He was also quite child-like and enthusiastic, and so desperately proud of his four daughters. There was nobody we would rather have been with in the pub than daddy. He was so full of craic.
He was so ambitious for young people and very young at heart himself. He was very clued up and people would come to him for advice.
He always encouraged me with this crazy career of acting and I remember him advising me, "Always give a firm handshake kiddo" – that was very important for him.
In the end he was hit by pneumonia. He didn't suffer and we believe he was 100% with us right until the end. For his last four days there were us four girls and mum in beside him. It was a special time, not many have the chance to experience. It was terribly sad but there was laughter through the tears. We had a strong feeling of togetherness ... but such isolation at the same time.
He died on a Wednesday but we all felt he left us on the Sunday before. It was like his spirit went; something significant but indescribable happened. We knew he was on his way but yet we weren't ready for it. We were just five women entirely on our own in a room, thinking 'what do we do now?'
I believe he's here, now, in spirit with us today. It's just a feeling – I don't know if I'll see him again. I considered grief counselling and it's a fantastic thing to have a neutral sounding board, but we have each other. We may still need it in the future but we very much live in the present.
I was never angry with God for taking daddy but that's the way we were raised. It's about living and being thankful for what you've got. That's the way Daddy lived his life.
Since daddy died people have said to me, 'but surely dementia and Alzheimer's is an old person's disease?', and 'I didn't realise you could die from it'. It's often misconstrued as just a loss of memory.
For us the fund raising event at the Titanic has three purposes: to honour a truly wonderful man, daddy and husband; to lift the veil of confusion around this rapidly increasing disease, especially in younger people, and thirdly to raise much needed funds for the fight against dementia in the hope that we can prevent others from the pain we have endured."
Janette: 'He'd be in his own little world'
As a former nurse, Janette Duffy was well-qualified to look after her husband Patsy at home for the last stages of his illness, a condition she hoped against hope was a temporary mental breakdown. Forty years together in total, since meeting as teenagers at the Castle Ballroom in Dungiven, they were married for 37 years. She says:
Patsy never once spoke about what was wrong with him. The day he was diagnosed, Professor Passmore said directly to him, 'Patsy, I'm sorry but you have early onset dementia', but there was no reaction from him. He was looking at his watch and more interested in getting into town to meet the fellas he used to work with in the bank. The professor explained to us the onset was so rapid on one side of his brain, that Patsy just couldn't take it in.
The first symptom I noticed was when he'd forget to go to the shop. He'd ask me every day what day it was, then he started to go and buy the paper when he got up so he'd know. He was cute that way. He'd had a very high IQ and was always three steps ahead of everyone else, then he started to do silly things like leaving his keys in the fridge. He'd be in his own wee world and right enough, you'd get a laugh at some of the silly things.
We spent thousands on all sorts of alternative therapies like acupuncture and synergy healing, and tried the energy healing Michael Flatley had done, and we even tried medication for MS that someone recommended. We also got all the mercury fillings taken out of his teeth, at great cost, but nothing worked. We went to a healer in Dublin but he couldn't help. We were supposed to see the healer Danny Gallagher in Maghera at one stage but Patsy was too far gone by then.
It felt unreal and it was so frustrating to have to beg for scans, which showed up nothing. I eventually insisted on an MRI scan; I knew there was something not right. The doctors thought I was paranoid – they said they could only push it through as urgent if it was cancer.
We'd hoped it was just some sort of breakdown he was having. He'd come in from work and just sit there – he wasn't the same person any more. He was never agitated or aggressive; he was an amazing patient. He smiled the whole time.
It's a blessing he was able to come home. He loved his home and he put a lot of work into it. He had two carers four times a day and they were great with him.
Patsy and I had a great married life. We had our ups and downs but he was a good husband and a great father to the kids. He never said 'God, I'd love a wee boy'. He was thankful for the girls and his grandson, our eldest Tanya's wee boy, made up for it. He also had a lot of nephews and a godson, Kevin, who was like a son to him. Our daughter Aisling (35) is due to give birth tomorrow – that's a big occasion for us to look forward to.
Patsy and I travelled the world and he organised everything. You tend to take all that for granted ... I tell people now to enjoy everything, even the arguing. I miss him and I do get so lonely. We had an amazing life and I didn't know it.
My advice to anyone is just enjoy your life and don't take anything for granted. Count your blessings. I don't know if there's an afterlife, to be honest. I'd be a hypocrite to say so. I just try to keep busy. The girls are amazing and full of life. They're very positive which they get from both of us. They and the three grandchildren keep me living.
The fund raising night is very important to us. Dementia is genetic – three of his aunts have dementia, but not early onset. One is 86 and still functioning well. If we could come up with something that could help future generations it would be a great achievement. It's not going to bring Patsy back but it's something positive, in his honour."
A devastating disease
Dementia is one of the most devastating illnesses of our generation: by 2021 there will be over one million people with dementia in the UK. Currently there is no cure for the condition and the facts and figures about the impact of Alzheimer's Syndrome and other dementias make sobering reading.
* It is estimated that more than 15,000 under 65s have early onset dementia, including some people in their 50s, 40s and even in their 30s.
* Dementia currently affects 820,000 in the UK, including nearly 16,000 in Northern Ireland.
* 25 million of the UK population have a close friend or family member with dementia.
* One in three over 65s will die with some form of dementia and the population is ageing rapidly.
* As well as the huge personal cost, dementia costs the UK economy £23bn a year, more than cancer and heart disease combined. Despite these figures, dementia research is desperately underfunded.
* For every one pound spent on dementia research, 12 times that sum goes on investigating cancer, and yet the numbers of dementia sufferers being diagnosed are growing at a rapid rate.
* The Forget Me Not benefit in memory of Patsy Duffy on March 14, 2014 will raise funds for the Alzheimer's Society and Alzheimer's Research UK.
The gala at Titanic Belfast will feature a host of famous faces whose lives have been touched by this cruel disease, in an evening filled with food, music, laughter and dance – "just as Patsy would have most enjoyed," says his widow Janette.
"We want to turn the devastating experience we have had in losing Patsy into something positive that will make him proud."
Alzheimer's Society: 028 9066 4100. Alzheimer's Research: 0300 111 5555.