Life Health & Wellbeing

Monday 23 July 2018

'A big alarm was when he couldn't find my brother’s house' - Writer Julia Kelly on losing partner Charlie Whisker to Alzheimer's

She was lost when they first met, and Julia Kelly credits Charlie Whisker for helping her to evolve into the person and the writer she is today. Not long after, however, Julia began to lose Charlie to Alzheimer’s. She tells Sarah Caden how she wrote her new book  ‘Matchstick Man’ at Charlie’s request, and to keep his memories fresh for their little girl

Julia Kelly. Photo: Kip Carroll
Julia Kelly. Photo: Kip Carroll
Charlie Whisker and writer Julia Kelly. Photo: Martina Devlin

When Charlie Whisker visits the Dalkey 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.

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.

I meet Julia Kelly at her Dalkey home, in the living room with its huge, bay-facing window and surfaces covered with photographs of Ruby Mae, Charlie, Julia herself and also her late parents on their wedding day. It is a bright and expansive room, a sort of idyllic writing space, even if its sense of light and openness is at odds with the subject of Julia’s latest book, Matchstick Man, an account of her relationship with Charlie Whisker and of his Alzheimer’s.

“I always tend to write from my own life,” says Julia of her previous, highly acclaimed books, With My Lazy Eye and The Playground. “My plan for my third novel was to set it in Italy, at a family wedding. I was mapping it out, but at the same time, Charlie was becoming more and more unwell. We had sold our house in Bray, and I was living with my sister and he was living in Killiney. I was trying to care for him twice a day and trying to mind Ruby Mae, and it was all very overwhelming.

Relationship

“So I went over to Charlie one day and he asked what I was working on and I said, slightly resentfully, ‘Well, all I’m writing about is this’. And he said, ‘Will you write a book about me then?’”

So that is what Julia did. 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 artists’ 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. How she wanted to spend all her time with him, how he consumed her thoughts, how she quickly ended a long romantic relationship because she knew she couldn’t shake off her attachment to him.

She was in Annaghmakerrig in an attempt to really give writing a go. Julia had a career in the civil service but writing was what she wanted to do, though her self-belief was weak. It was that, in particular, which Charlie Whisker bolstered in her. And, as she recalls it, his faith in her was intoxicating.

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 and Fine Gael TD John Kelly, grew up in Dublin’s Ballsbridge, in a world she never felt she quite fit. She laughs at her young self, who was so embarrassed of where she lived that she’d have taxi drivers leave her around the corner for fear they’d see her house and think badly of her. She 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.

In those early days, Charlie read Julia’s writing chapter by chapter, and was “brutally critical”. He would also print out lists of words for her to use in her writing. He quieted her self-doubting voices, but he’d also write things of his own and tell her, “This is how you are supposed to do it.”

“Charlie was great at telling me that there were no rules; to write not just with the visual but with all the senses. Have fun. Make a mess. Explore. 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?”

Behaviour

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. The two elements are very tied up in one another, and it is hard at times to tell if she’s recalling simply how a relationship died or how an illness killed it.

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.

“I hope it’s warts and all about me, as well,” she says, when I comment on this. “Charlie has always adored me, and been incredibly loving, even if a bit controlling.”

And, yes, she’s painfully honest about herself and her own triumphs and failures, regrets and distress. And grief, great grief, over what was hoped for and what never came to pass — which was a long life and a loving family with Charlie.

“Charlie was diagnosed in April two years ago,” says Julia, pausing to check what year it is, before adding, “I’m really bad at dates. It was three years ago. No, five years ago; my God, it’s gone so fast.”

“Yes,” she says, “and 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?”

There are things that Julia wonders about now. She wonders if she had been more assertive, would they have avoided buying their former, huge house in Bray during the boom? She wonders if she hadn’t had Ruby Mae  and been so besotted and consumed by long-awaited motherhood, might she have spotted changes in Charlie earlier? She wonders why she never noticed when he stopped painting new pictures and started daubing white paint over his old ones. She wonders a lot of things, but she also knows that there’s no point.

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.

“We were abroad seven or eight years ago and he was driving on the wrong side of the road, getting confused by money, not finding the hotel room. I put it down to things like he was hung-over or stressed or jet-lagged. I worried that he had become too dependent on me and that I had made him less able to do all sorts of things. But, looking back, there were loads of signs.”

None of this was helped by the fact that, naturally, Julia had grown a lot as a writer. With My Lazy Eye was very successful for her, and her feelings of wanting to detach slightly from Charlie as her mentor were in direct proportion to his need to maintain a feeling of control in his life.

Dynamic

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. Julia admits that she was consumed by the baby, and wanted to do everything herself, and regarded Charlie’s ways as slightly out-moded, but there was more to it than that.

On some level, she instinctively knew that Charlie wasn’t able for parenthood, and the anger that often comes with the early stages of Alzheimer’s was often directed at the mother-daughter relationship.

“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, and very early on I remember, and a lot of women will relate to this, I remember my heart going cold. I thought, ‘This isn’t good any more, and this isn’t good for my child’. 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 called us both c**ts, and I thought at that point — no.”

When was this, I ask? “Mmm, Mum was still alive,” says Julia, in the manner of a person who has had a long period of repeated blows and measures out time in relation to them.

“Mum died when Ruby Mae was three,” she says.

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.”

Second-guessing

Obviously, given they went on to try to have another baby, there was hope still in the relationship between Charlie and Julia when her mother died. Also, when Julia relates these stories, although they can sound hard on Charlie, in fact, in person, you can see that she is eaten up with second-guessing herself and with all the guilt that accompanies a situation like this.

In Matchstick Man, Charlie’s diagnosis and the end of their relationship are quite blurred together. This makes  a strange sense, though, and adds to the sense of confusion that comes with the territory.

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 the North, and he was haunted by that death.

The spent matchstick became a motif in Charlie’s paintings, representing the matches with which he lit cigarettes while holding the boy he was determined would never be forgotten.

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.

“My brother asked, ‘Is he depressed because you’ve broken up with him or is it something else?’”

Of course, it might have been some of both. Essentially, Julia stayed out of guilt and fear and loyalty, particularly once Charlie was diagnosed. However, living together soon became impossible.

“We went to an appointment in St Vincent’s, some time after he had been diagnosed,” she says. “We were all living together and it was very fraught and horrendous for Ruby Mae. She’d seen him trying to step out a window and he had terrible nightmares. He was physically very rough with her and he was so frustrated. He washed her hands with scalding water; he tried to force her into a car seat upside down. And she’s a very smart little kid and she always knew what was wrong, and she’d tell him and he’d scream at her; like when he put her in the bath with her socks on. It was acutely stressful.”

While in Vincent’s with Charlie, Julia went to see a social worker and she broke down. The social worker explained that living together was untenable and that it was an “urgent child-protection issue”. That changed things for Julia.

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.

What she writes about in Matchstick Man is not just about Alzheimer’s or Charlie, but how we are all frail and floundering and just trying to do our best against the odds.

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. She’s like “a mini-parent” to her dad on these visits, holding his hand, helping him down the stairs, gentle and sweet with him. When he visits the house and goes about unpacking boxes, Ruby Mae absents herself, Julia says. She loves him, but she’s a little scared of him, too.

To some extent, for herself and for Ruby Mae, Julia feels a little cheated. For Charlie, though, she feels huge love.

“And my heart breaks for him,” she says, “it really does. He says to me now, ‘I’m wasting your life and I’m ruining everything and I’m no use to you.’ And I tell him, ‘You gave me my writing; you gave me Ruby Mae; you couldn’t be more important to us.

“And in many ways,” says Julia, “I love him more deeply now than I ever did before.”

‘Matchstick Man’ by Julia Kelly, is published by Head of Zeus

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