'Charlie would've washed our daughter's hands in scalding hot water, he'd put her in the bathtub with her socks still on... he was very frightened and confused but when Alzheimer's was diagnosed he was buoyant and realised it wasn't his fault'
When Bangor-born artist Charlie Whisker developed dementia, his world and that of his family's fell apart. His former partner, Julia Kelly, tells Linda Stewart about their life together and why she decided to write a book about it
It was almost a storybook encounter - the blossoming young writer meeting the internationally acclaimed artist at a creative retreat in Co Monaghan, abandoning their work, taking off for long walks and then falling deeply in love.
Despite a 20-year age gap, Julia Kelly and Charlie Whisker spent a blissful few years together, hobnobbing with rock stars in Dublin's heady arts scene and raising a daughter together. But the idyll was cut short all too soon when Charlie began to show symptoms of dementia.
These days, the couple have separated, the Alzheimer's has taken full hold and Charlie (69) lives in a nursing home, but Julia (49) still visits him almost every day and Charlie still has a strong bond with their 10-year-old daughter Ruby Mae.
"I love Charlie more deeply than I've ever loved him, but it's not a romantic love. Our bond is very deep," Julia says.
She recounts a conversation she had with Charlie earlier in the progress of the disease when he asked what she was working on and she said that all she wrote about was him.
Charlie asked if she would write about him and his life and she agreed that she would, but it would have to include the dark days as well as the good days. But before putting pen to paper she also sought the blessing of one of Charlie's other daughters from his earlier marriage.
Julia grew up in Donnybrook, one of five children of the late Fine Gael TD and Attorney General John Kelly.
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"I grew up in Donnybrook in a big old house in a nice part of town. I was so ashamed of being posh that I never told my friends where I lived - we didn't have any money but we lived in a big posh house," she begins.
"I have one little girl who is 10 years old. Charlie wanted her to have a title so she's called Lady Ruby Mae Whisker, but we call her Ruby Mae.
"Charlie has always called her Nipey, from an old rhyme: 'Poor wee Nipey, wet and weary, sold her bed, slept in the hay. What a silly wee billy she was.'"
Julia's father died of a heart attack at 59, and at 72 her mother suffered a fatal aortic aneurysm while on holiday in the Galapagos islands with a group of friends.
When she met Charlie, she was in a relationship with a senior editor at Rough Guides and was living in Dublin, but was feeling trapped in her relationship and unhappy in her work. Her brother suggested she focus on her writing skills by going on an artists' retreat to the Tyrone Guthrie Centre at Annaghmakerrig - and that is where she met Charlie.
"On the first week everyone kept talking about Charlie and Skippy. At the end of the first week, Charlie and Skippy appeared at dinner - and he was this very thin, gaunt, bald man from Bangor. He was wearing really baggy dark clothes and Skippy was a six foot iguana which Charlie had snuck in.
"When I first saw Charlie, it was like a Caravaggio painting - I remember a circle of light around him and it was a special moment," she says.
She was entranced by Charlie's stories of his childhood in Bangor.
"His mother ran a boarding house at the Seacliff Road and he had a really magical, very free boyhood. He used to go out on a dinghy on the bay with his dog Wendy and when it was time for dinner his mother would flash a torch to bring him in," Julie says.
"His mother had two polecats and she used to come in with the breakfast with Butch and Squeak lolloping beside her. One day Butch got into a honeymooners' bed and curled up in the pyjamas and the woman absolutely screamed her head off. And his mum said 'Don't be stupid, it's only an old polecat - if you don't like it, you can go."
As their friendship developed, Charlie opened up to her and revealed some of the darker things in his past.
He'd hadn't done well academically but showed early promise as an artist and ended up teaching at the art college in Belfast.
"While he was at the art college, Charlie was walking home on the July 11 after he'd been at a bonfire," Julia says.
"He had walked through Pigeon Wood and he came across a boy who he later recognised as Michael Brown, the brother of a friend of his and a student where he was teaching. The boy had been shot in the head. Charlie sat with him and the boy died in his arms and then the people came back to see if he was dead and Charlie was able to identify them.
"The next morning Charlie brought the police back to the spot where the murder had happened and there were all these spent matches on the patch where he had been sitting and smoking.
"He used these matchsticks as a symbol for the boy and that symbol appeared in every one of his paintings for the rest of his career.
"It was a great comfort to the family that their son didn't die on his own and Charlie had been brave enough to stay with him. But he never received any counselling to get over it."
Charlie had to appear as a witness in the trial of the Red Hand Commando killers and was warned by loyalist paramilitaries soon afterwards to leave Northern Ireland.
"It hit him really hard and just the trauma of having somebody die in your arms - a lot of his paintings describe idyllic scenes, like a picnic where everything has been suddenly been abandoned, and it's describing that loss of innocence. All his paintings contained pills and bungee cords and things like that to signify tension," Julia explains.
After years in London teaching art Charlie moved to Dublin and began working at Windmill Lane on various artistic overlays before moving to California for a job at Windhill Lane there.
"He moved out there with his first wife Mariad and his two children, Domino and India, and he had an incredible life there working on music videos for Bob Dylan, Bruce Springsteen, Bette Midler. He was very friendly with U2 and Van Morrison and just had a fantastic, exciting life.
"When I met him, he had more or less just moved back to Dublin, the dotcom bubble had burst and he moved back to Ireland. He found the transition really difficult and lost a lot of money and began painting full-time.
"He saw me as a blank canvas and I saw him as a mentor, and we both really needed those things at this time. His marriage had just broken up and I was escaping a relationship in Dublin," she adds.
In the first few years of their relationship, Julia began to get book deals and describes the period as a honeymoon, with her growing success and Charlie having sell-out shows.
"We bought a big old house that we couldn't afford and almost as soon as we moved in the Celtic Tiger crashed.
"What I'd always wanted was to have a lot of kids. Charlie already had two girls and wasn't that interested, but he was willing to do it for me. It was really hard to have babies and it took a lot of trying, but we ended up with Ruby Mae."
But when Ruby was around two, the worrying signs started to appear. Charlie stopped being able to paint and struggled to use the telephone or find his way back to the hotel when they were in America.
"In retrospect, there were so many signs but at the time you justify things," Julia says.
"With Ruby Mae there were a lot of strange things. He'd wash her hands in scalding hot water, he'd put her in the bathtub with her socks still on, he'd put in the baby seat upside down and then get furious with her. At times like that it became kind of dangerous and very tense. He was very frightened and confused, but was able to hide it."
Things unravelled even more when the couple lost a baby at 17 weeks of pregnancy. Julia spoke to the GP about Charlie's symptoms but it took nearly a year to get the Alzheimer's diagnosis.
"On the drive home, he was buoyant, saying 'I knew it wasn't my fault', but I remember crying my heart out all the way home. It was a form of grief."
As the illness developed, Charlie became reclusive and at times aggressive. One of his daughters moved over from America and began to help with his care.
But Julia was close to breakdown herself and the final straw came when a social worker warned her that she didn't want Charlie to spend even 10 minutes unsupervised with Ruby Mae.
"I was worried that it was damaging for Ruby Mae to see such aggression," she says.
In the end they separated - Charlie moved into a shared house with a paid carer three days a week, while Julia and Domino shared his care.
"I felt incredibly guilty about having to move out of living with Charlie," Julia says.
But she felt she had no choice, worried that Ruby Mae would be left with two sick parents.
"Now Charlie is in a nursing home in Dublin and I see him perhaps five times a week and his daughter sees him pretty much every day," she says.
"He can't feed himself any more, he's hard to reach, he's very quiet. One of the saddest things is that he still has these terrible rages and he can become very volatile.
"What I find very frustrating is that when he has these rages he is treated as if that behaviour is part of his dementia. But I think on days like that, it is Charlie becoming lucid and not being able to communicate or describe his symptoms. He's in a world that no longer makes sense to him.
"Even with this confusion, Charlie is always asking for Ruby Mae - 'How's wee Nipey, is she on her bike yet?' And she's incredibly grown up with him - she holds his hand to help him across the road, she helps to get his shoes."
Julia has been in a relationship with photographer Kip Carroll for the last year and says he feels 'heaven sent'. But she worries about what lies ahead.
"It's like a freight train coming down the tracks, which is Charlie's death, and I can't do anything to stop Ruby Mae losing a parent - and that is truly sad to me," she says.
On the positive side, the 10-year-old has learned to be resilient and learned to love her dad for who he is, Julia says.
"It was very hard to know where Charlie ended and the illness started. He's always been a larger than life character and prone to fits of anger, but even now he's funny and witty and original.
"Ruby Mae seems to have developed his gift for art. Her drawings are absolutely beautiful, just amazing."
Julia Kelly will discuss Matchstick Man with Hugh Odling Smee at Studio 1A Theatre, Bangor on August 20 as part of the Open House Arts Festival. For more details, visit www.openhousefestival.com/event/matchstick-man. Matchstick Man by Julia Kelly, published by Apollo, £8.99