'Some people feel I abandoned Charlie, but leaving gave our little daughter her childhood'
When Bangor-born artist Charlie Whisker visits the house that his former partner, Julia Kelly, shares with their daughter Ruby Mae (9), they often go through boxes together.
They are big boxes that Julia keeps in the shed, she explains, packed with stuff that Charlie collected over the decades. He collected everything, she says, and he loves to go through the contents of the boxes now, minutely examining the items, though they do not necessarily conjure the memories that once were attached.
When they finish a box and repack it, Julia says, sometimes Charlie will start into it again, not remembering that he has been through it already.
Julia smiles at this. It is trying, she admits, but if it gives Charlie some pleasure on his visits out from the nursing home where he now lives, then so be it.
It's a tricky thing, Alzheimer's.
Julia, at Charlie's request, has written a memoir, Matchstick Man, about their time together and his decline as Alzheimer's has become more pronounced.
Charlie, a painter, a video director, a lover of words and music and books and nature, sometimes rages against his early-onset Alzheimer's. And when he does, it is extremely difficult for those around him, but when he rages, he is also most himself.
When Charlie is at peace, and easiest to be around, is when the disease is dominant. Peace can even be a sign of the disease's progression. When he is at peace, Julia says, it is easier but harder, because then you feel how he is slipping away.
When he doesn't want to unpack the boxes any more, when they mean nothing to him - that will be more dreadful than any repeated, unremembered unpacking.
She wrote Matchstick Man to preserve Charlie, but also to please him, a pattern in their relationship laid out from its very origins, more than a decade ago, in the Annaghmakerrig artist's retreat in Co Monaghan.
"When I met Charlie, I'd written virtually nothing," Julia says. "I was a total beginner, and he was well established. He'd been to LA and back; he was 20 years older than me. And he really hugely helped me to start writing. He was massive; a mentor."
In Matchstick Man, Julia skilfully captures her initial almost-addiction to Charlie. She was also impressed with how successfully Charlie had carved out a life for himself as an artist. He had spent years in LA as a video producer for the likes of Bruce Springsteen and Bob Dylan. He had been married to fashion designer Mariad Whisker, with whom he had two daughters, India and Domino. His paintings sold plentifully and profitably. Charlie had lived, and lived on his own terms; unconventional, utterly contrary. He was his own man, and Julia admired and was drawn to that.
"When I met Charlie, I was quite lost," she explains. "I was wearing glasses, I had short hair, I was quite insecure. I was unsure of where my life was going. And within a year of meeting him, so much had changed for me. I was kind of like a project for him, though I only realised that in retrospect.
"I was like a blank canvas for him. He said, 'You'd look so lovely with long hair', and he encouraged me to have laser eye surgery. And he gave me my writing career, he really did."
Julia, the daughter of the late former attorney general in the Republic and Fine Gael TD John Kelly, was a rebellious daughter who was devastated not to make peace with her father before his sudden early death when she was 21.
You could read a need for a father figure into Julia's attraction to Charlie Whisker, two decades older, at a time in her life when she felt particularly lost. It might have been just what she needed and, for a time, it was a wonderful and productive relationship which not only supported her first, award-winning novel, With My Lazy Eye, but gave Julia her much-wanted child, Ruby Mae.
"He was incredibly good at opening me up," Julia says. "But what I didn't realise then is that eventually you have to take flight and be independent, don't you?"
Julia charts this trajectory in Matchstick Man, which, in some ways, is the story of the rise and fall of a relationship as well as the story of the course of Alzheimer's. Certainly, Julia Kelly pulls no punches in how she charts what has happened to Charlie Whisker, his behaviour and his alteration in the last decade. "It's possible he had Alzheimer's throughout our relationship, to some degree, without me or him realising. Even now, it's hard to separate Charlie and the illness. Looking back, what was Charlie and what was Charlie fighting the first bits of Alzheimer's?"
Julia explains how Charlie's own character probably helped to mask the beginnings of the Alzheimer's for a while.
"He depended a lot on me from the start," she says. "For the practical stuff. He couldn't use an ATM. He didn't do ordinary stuff like that. He was eccentric; very bright and artistic, but not practical. And I thought that was just him, but he became more dependent, more eccentric. Looking back, there were loads of signs."
Increasingly, he wouldn't have anything to do with Julia's friends or family and, over time, didn't like her spending time with them, either. Further, the arrival of Ruby Mae shifted the domestic dynamic in their relationship, as all babies do, but Charlie found that hard to cope with.
"Ruby Mae, from the very beginning, wanted everything from me, and Charlie felt very excluded and hurt," Julia says. "He'd say, 'She doesn't like me'. I think he didn't have the stamina for it, but, poor Charlie, he was getting ill as well. And I didn't know this. And I feel guilty about a lot of things.
"But, you know, we had run out of money; we had this house in Bray that we should never have bought, and as soon as we moved in, the Tiger crashed, and Charlie wasn't painting any more. He'd be sunbathing, or gardening or doing the ironing, and I'd be going mad saying, 'Why aren't you painting?' He seemed to be taking it so easy, but unbeknownst to me he was going through hell.
"I remember one time going into his studio and all these photos of his life were laid out," Julia recalls, "as if he was trying to make sense of it all. For a long time, it was a very private battle; he didn't talk to me about it at all. I think he felt that he was losing his mind, but he just didn't tell me. I think he was really, really, really scared.
"He was regularly burning things in the oven and leaving his keys in the front door and having more and more rages. He would get very upset with me and Ruby Mae. The turning point was when he gave Ruby Mae a filthy toothbrush cup to rinse out her mouth and I stopped him and he was raging and cursed us both, and I thought at that point - no."
The loss of her mother was a turning point in Julia Kelly's relationship with Charlie.
"My mother died swimming in the Galapagos, and about a year after that I lost my baby at 17 weeks and I had to give birth to her, and that was all very tough. One of the big alarm bells was the day after my mother died. Charlie was coming to collect me and Ruby Mae and he couldn't find my brother's house," Julia says. "And my family were furious. Typical Charlie drama, and all about him while we're suffering."
The title of the book, and the drawing of a lonely, spent matchstick on its cover, comes from a key experience in Charlie's life. When he was a young man in Bangor, Co Down, he was walking home one July 11 when he saw a teenage boy shot in the face. Charlie went to the boy, only to discover that he was the 16-year-old little brother of a friend. Charlie held the boy for the 20 minutes it took him to die. He testified against his killers and had to leave Northern Ireland, and he was haunted by that death.
After Julia's mother died and then their baby, Charlie went into a depression in which he confused the dead boy in Bangor with their child, a tiny little girl, small enough to hold in one hand. It was dreadful and distressing for everyone.
"It was all very messy," Julia says of the end of the relationship with Charlie, though they have never left each other's lives. "About a year before he was diagnosed, I said to him, 'This isn't working, Charlie'. I had this conversation with him many times. And whether it was the Alzheimer's or him not wanting to accept it, it just never sunk in and he got more and more depressed."
Essentially, Julia stayed out of guilt and fear and loyalty, particularly once Charlie was diagnosed. However, living together soon became impossible.
She still felt guilty and probably still does. She knows and tells me she knows, that some people felt that she abandoned Charlie, but she also knows that they have not walked in her shoes. They sold the millstone house in Bray, which had once been full of "hope and dreams of filling it with children". Julia moved in with her sister, and Charlie, for a time, lived in a house in Killiney. Julia visited every day and Charlie's daughter Domino, then in her early 20s, came home from California and threw herself into his care.
After a time, it came to pass that Charlie was no longer able to live in that situation, and Domino said that she wanted him to live with her. It was an extraordinarily loving and generous gesture, Julia says.
"My first thought was that this would be very tough on her," Julia says. "She was so young, but it was so big-hearted."
I wonder did Julia feel guilty about this move, though, did she feel that she should take Charlie in with her?
"Yes, but I couldn't," she says. "If Ruby Mae was anything other than angelic, Charlie couldn't handle it. Domino gave Ruby Mae her childhood. I felt released, but incredibly guilty. You're damned if you do and you're damned if you don't."
Charlie lived with Domino for 18 months before entering a nursing home. He cried on his first day there. It's hard to see him there, says Julia. He is in a locked ward and, like a lot of the other people there, Charlie is always up and dressed - still in his Converse boots, his leather jacket, his trilby, still looking like himself - all set to leave at any minute.
Julia visits six times a week and Domino is equally regular. They call themselves Charlie's Angels. Ruby Mae goes in once a week. "And in many ways," says Julia, "I love him more deeply now than I ever did before."
Matchstick Man by Julia Kelly, Head of Zeus, £16.99
Bangor-born artist and director Charlie Whisker
now lives in a nursing home as Alzheimer's disease
tightens its grip on him.
His partner Julia Kelly has written a book about the
decline of his health and their relationship, and she tells Sarah Caden it is her way of keeping his memory fresh for their little girl