My wife Anita - A living loss
Former RTE director and author Anita Notaro has a sixth book coming out, but knows little about it as it was written before dementia took over her life. Sarah Caden talks to her husband, Gerry McGuinness, about his daily battle with his wife's agonising illness
In the spring and summer of 2010, Gerry McGuinness's greatest hope was that his relationship with his wife, writer Anita Notaro, was falling apart.
They didn't click as they used to and she seemed different to him, not quite the woman he loved. It was little things, as it always is in the beginning, either when a relationship is disintegrating or something worse. It started with her forgetting things, things she had said or things other people had said. Then it was significant events like deaths or anniversaries, which Anita had always been on top of, as a classic oldest child, "the boss of all of us", as Gerry says. "And then she became slightly childish," he goes on, "slightly repetitive. She started singing -- nursery rhymes -- just a little bit too much. She stopped watching documentaries and started watching, well, things that were easier viewing, let's say. She'd have a croissant for breakfast instead of something healthy, or egg fried rice instead of a proper dinner. She started wearing favoured clothes -- the dresses and high heels were all put away and it was jeans and favourite comfy boots all the time.
"I thought, in a way, that it was just our relationship going wrong," Gerry says, acknowledging that this was what he hoped against hope, as the least of the evils that ran round his head. "I thought maybe she was deciding to kick back, let it all hang out a bit, that she deserved it, but that it was a sign that maybe she was going her way and I was going mine.
"All the little things sound very minor, but they added up."
And there was the teeth-grinding. Loud teeth-grinding, says Gerry, which allowed him to put the changes in Anita down to stress. But, in his heart, Gerry knew it wasn't stress, and it wasn't that they were drifting apart, though no matter how much he conveyed his concern to Anita about her forgetfulness and altered behaviour, she seemed unbothered.
"As her illness dictates," Gerry explains, "Anita has never, in these past two years, believed that anything is wrong. She's never been angry, never been upset by it. She thinks that there is no problem and that is the only saving grace in it all."
Gerry McGuinness decided to do this interview because he believes it's what Anita would have wanted. Her sixth book, A Moment Like This, completed before her 2011 diagnosis with front-temporal dementia, is due for release and he wanted to mark it, to make something of it, to promote it as Anita would have wanted, inasmuch as he can. Gerry knows talking about what Anita would have wanted makes it sound like she has died, but she is a different Anita now and not capable of doing this herself, and it's an act of respect for Anita as she was, he says.
Anita Notaro very much defined herself by her capability. She worked for 16 years in television for RTE, working her way up to director, blazing a trail, directing everything from Eurovision in Millstreet to The Movie Show. And then, after a chance encounter with Patricia Scanlan on the eve of the millennium, during which the best-selling author said to Anita that she must have a few stories to tell, she gave up television to pursue a writing dream. She took a redundancy package, but agreed to return occasionally to direct Fair City, and began a very successful writing career, starting first with After the Break, the tale of a TV chat-show host. It was her dream and she approached it methodically and made a success of it. Breast cancer hit her in the last decade but she beat it and, really, Gerry says, they were happy with their lot. Anita had overseen a huge renovation of her "dream home" in Brittas, Co Wicklow, and they had moved there in the late 2000s, though the snag list that was never attended to niggled at Gerry, because it was so unlike Anita.
Late in the summer of 2010, Anita's sister rang Gerry and said she was worried about her. They had all been at a family barbecue the previous day and she had noticed how Anita had gravitated towards the children, singing with them and seeming more on their wavelength than the adults. Gerry felt incredibly relieved to hear someone else share his growing concerns, particularly as Anita did not take them seriously. His anxiety about her behaviour had grown over that summer. He had taped her doing book reviews on television and had noticed, not only the marked grinding of her teeth, but that her review was vague, with, "none of that Anita flair".
She had written an article for a newspaper about marriage proposals, and when Gerry read it, he found that it was full of strange embellishments, such as that he had the engagement ring ready for her and that the ring described was not even her ring.
It was not a good summer, Gerry says, and it was a massive relief when first Anita's sister, and then others, told him they had noticed things amiss, too.
They went to a psychiatrist first, who said stress was not the problem. She also confirmed that Anita's lack of comprehension of Gerry's anxiety and worries was not a good sign. From there, they went to St James's Hospital, where Anita did tests that confirmed she did not have Alzheimer's and, after that, Gerry had hope, briefly. "I walked back to RTE [where he is business development and sponsorship manager] on a cloud," he recalls. "I was on the phone to her sister in tears. I thought, fine, it was stress, it would pass. But then, in another few months you realise it's not passing at all, she's not behaving properly. She could cook and garden and do all kinds of stuff, but it was her behaviour that was off.
"It's not like, you know, stuff your wife does that bugs you, it's something entirely different. You're not equals anymore, back and forth. It's different. I mean, you couldn't get through to her that she was doing things that were dangerous or worrying. She couldn't empathise or understand. Like, she would put her hands through the steering wheel when she was driving and drum along to whatever she was singing. And she didn't grasp that this was dangerous."
Ultimately, a PET scan, which maps the brain, showed there was an issue in the front temporal area of Anita's brain, where personality and behaviour is controlled. Gerry, Anita's sister and Anita were there for the diagnosis. "And the doctor's saying, 'It's not good, it's going to get worse, she shouldn't be driving and all of this'," Gerry recalls. "And Anita says, 'Fine. I'll see you in a month and we'll see how it's going'. That's a perfect example of the disregard that comes with what Anita has."
Gerry is frank about the rate of Anita's decline since her diagnosis. He talks about how he gets used to one phase and then things change again and he has to alter his reactions and expectations. He says it's easier to cope when he's panicking, because then he hasn't time to think, but when things settle down, his mind runs to the future and potential problems and he sinks into something close to despair.
"She has changed dramatically since we came back to Dublin in the snow of 2010," Gerry says, having explained that doctors advised they move back to their Dublin home, near RTE, so Anita could be close to him during the day. "By August 2011, her full-time career was gone, there was no driving, no reading, no writing. By now, she's having difficulty with her swallow. All they can say to us is that it can last years, but the fact that she's deteriorated to this point so rapidly, they would expect it to continue at the same pace."
Since last August, Anita has a carer at home while Gerry is at work. It has made a huge difference to Gerry, but when he maps out his days to you, it sounds like a mother of a small baby, running from Billy to Jack, never with enough hours in the day, never feeling they're quite doing everything. And Gerry knows that's how it sounds, even though he and Anita, by choice, never had children. And he doesn't mean to sound disrespectful of Anita as an adult, but it's the truth. If he forgets the milk on the way home, at this stage he cannot either leave her at home while he nips out or bring her with him, because "bringing her into a shop is problematic".
The Alzheimer's Society, which provides Edel, Anita's carer, is wonderful, he says. Anita's family is also fantastic, and her sisters give him a night off every week, where he goes to the house in Brittas after work, plays a few holes of golf, has a few pints and doesn't talk about the illness and then goes to bed for a night's sleep without one ear open.
Friends have been great, too, though he could live without blokey invitations out for a pint midweek. "I can't go out," he laughs. "But I could do with the lawn cut or something. It's like when people say, 'You should go and talk to someone'. When? Are they going to mind Anita while I go?
"I'm like the single parent of Benjamin Button," Gerry continues. "With kids, they start to walk and talk and become more and more able to do things for themselves. But I'm going the other direction. She's starting to have trouble with her swallow; I'm told that she will eventually stop singing, which she does all the time now, and become mute; they say that the pacing around the kitchen she does will stop and she'll become still. And I've no partner to share it."
Once he started to worry about the change in her, and once he realised Anita was not worried by it, that was the moment their relationship changed, that the balance tipped, Gerry says. It's a terrible weight, he admits, and he fears sometimes there will be nothing left of him "at the end of it", but there is consolation in the childish happiness Anita enjoys. It is lonely, though, for him.
"Anita found me crying in bed one night," Gerry says, "and she asked me what was wrong. I told her that I missed her and she said, 'But I'm here'. And I thought, 'But you're not'."
Strangely, A Moment Like This is concerned with a woman who has, she feels, lost a lot of her life and herself to years spent caring for her invalid mother. It displays great understanding of sacrifice in the name of love, but, as the book describes how the heroine, Antonia, explores her passion for singing and suddenly becomes a superstar, it also explores the importance of not losing oneself in the role of carer. It was written, however, before Anita became ill and before Gerry took on the role of caring for her. This is curious, Gerry admits, but he also points out A Moment Like This is about seizing the day, accepting that you only have one life to live and living it as best you can -- not only for yourself, but for the person you love, too, no matter how altered they may be.
Gerry is not sure that Anita will understand when he tells her that her new book is in the shops. He anticipates she will say, "That's nice," but that it will mean nothing, really. She won't ask why she didn't correct proofs, or do publicity or attend a launch, but he is keen that her last book be published and read, because that's what she would have wanted. And because, quite evidently, he still loves Anita, who she was and who she is.
"The beautiful thing is that Anita is happy," says Gerry McGuinness. "She's delighted with herself, not at all agitated or aggressive or unhappy. She doesn't get annoyed if she doesn't know you, but she's happy and affectionate and would pull the neck off you to give you a kiss. She was always tactile, but it's like that part of her brain has been ramped up and there's an innocence to her now that means that none of this bothers her."
Sometimes, less often now, Anita can still make Gerry laugh. It feels strange, he says, the spontanaeity and the laughter itself, and that is sad in itself. Gerry thinks about giving up work, because the juggling is so hard at the moment, but he knows, deep down, he must preserve something of himself. "For now," he says, "my role is to make Anita as comfortable as possible and make sure she has fun and joy in her life. I don't know what will be down the line, but we can only see what that is when we come to it."
'A Moment Like This' is published by Transworld Ireland, €10.99
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