by Amal Awad
‘It’s still quite recent and raw for me,’ he says, his body tensing up, his eyes a little moist. We’re sitting at his dining table, floor-to-ceiling windows allowing in bright light on a sunny day while music fills the space. James presses a button on his phone and the music stops. It’s that kind of house.
James launches into a detailed explanation of what happened to his mother, speaking like someone who understands the human body and medicine. He sounds like a medical professional, not a business owner.
‘My mum was diagnosed with terminal cancer near the end of 2010, and it was stage four at the time, but it was pretty much stage five. Straightaway she had a gastroesophageal junction cancer, which was inoperable and untreatable. So she deteriorated very rapidly. She went through treatment, radiation therapy and chemotherapy.’ He takes a moment.
His mother died in April 2011. In his words, her death was ‘quite a horrific and painful deterioration’.
‘Yeah, it was torture watching my dad go through being there for her. He could do nothing for her. Dad was very mindful of it. The last five years of his life he’s actually been quite different.’
James’s parents had been together for more than sixty years, a couple who rarely spent time apart – sleeping in the same bed every night, waking up together. James’s father had mesothelioma, a tumour in the tissue that lines the lungs. His initial diagnosis of lung cancer seemed odd to James. He asked his best friend, an accomplished surgeon, to study the results, and she similarly frowned at them. Something wasn’t right. James told his father to get a second opinion.
‘They had said that he had a lung cancer and had ruled out mesothelioma. And I’m looking at it thinking, this has all the hallmarks of mesothelioma … The nature of it and the type of tumour just screamed mesothelioma. I thought, fuck. And this is the kind of thing that needs to be treated immediately or else it’s lethal – it’s going to kill you. And as it turns out it was too far gone anyway.’
The mesothelioma was the result of his father’s days as an apprentice electrician working in a mill where he was exposed to asbestos fibres and tape – dust in the air. ‘At the end of the day you’d hit your overalls, dust it all off, hang them up, come into work the next morning, put them back on, at the end of every week you’d go home, wash them and bring them back for the next week.
‘So he’s breathing this asbestos fibre continually all day, every day.’
The average time from exposure to development of mesothelioma is about thirty-five years; some might develop it ten to fifteen years later, others not for fifty years. Though some people exposed to it their entire life may never develop mesothelioma, it’s rare that they don’t.
James’s father developed it aged eighty, sixty years after the exposure. ‘So you could argue that he got a really, really good life out of it, but I’d argue that if he wasn’t exposed to it he would have lived to be ninety or a hundred.’
Of his relationship with his father, James says, ‘We were really close. I’ve always been closer to my dad. Dad and I have always “got” each other. We talked a lot. We shared a lot of commonality. He’s stayed in his outlook, and we had a good relationship. We could talk and talk and talk for hours.’
‘Did anything shift for you?’
‘You understand where they’ve come from,’ he says, almost as a question. ‘Like you filled in all the little blanks … Why they’ve become the person, or how they’ve become the person that they are. But when you understand how they got to where they got to, it makes a difference.’
James says what he misses the most is his regular call to his parents. ‘Every single Sunday, no matter where I was on Planet Earth, sometime between three pm and six pm Melbourne time I’d call, and almost always Mum would answer the phone, and I’d talk with her, or if Dad answered the phone I’d talk with him briefly, and then talk to Mum for twenty minutes, half an hour, whatever.’
They might talk throughout the week but there was this Sunday appointment. After his mother died, his father would answer the phone. ‘And I had to bite my lip because a few times I went to say, “Oh, is Mum there?” And now after Dad died there’s no one to call on a Sunday anymore, and I’ve been doing that for thirty years. Every single Sunday for thirty years.’
James’s life has been deeply shaped by the loss of a brother when he was young.
‘I shouldn’t say we lost him; we know where he is. He died.’
James’s younger brother, Daniel*, collapsed with a brain tumour at the age of eleven. The event meant that the next ten years of his brother’s life completely changed the dynamic of the family. ‘He had four major brain surgeries, and if the same kind of thing happened now he would have had one surgery and he’d be fine for a long lustrous life but … that kind of treatment, that kind of surgery wasn’t developed back then. So he had a lot of issues.’
We are here to talk about ageing and illness, and all that comes from it, but James’s story about his brother taps into a similar vein: mortality. The good life and who is lucky enough to have one.
Daniel transformed from a ‘ridiculously cute, just crazy kid’, James’s best mate, into an entirely different person. The damage from the tumour and the treatment created all kinds of psychological problems. Daniel withdrew and was placed in psychiatric care.
‘He basically just wanted to die,’ recalls James. ‘He had brain injury, injury to his vision, he was an entirely different person after the fall.’
It would be fair to say that not only did Daniel suffer, but so did everybody around him. ‘It changed our family.’ His family was Mum and Dad, and three kids, James in the middle. They went from being ‘the community family’ – involved in the football club, sports players, et cetera – to a completely changed family, one struck by the severity of an unexpected condition. ‘We weren’t prepared for it and we never ever recovered from it. Not that it’s something you recover from but …’
The counselling services the family were told would arrive never did. ‘We just sort of struggled through.’
At the age of fourteen, James was changed for life. Years later he is still dealing with it in counselling, ‘just to try and make a considerate effort to be a better man’. But despite his youth James also clicked into a practical gear, making conscious decisions about what his actions and thought processes would be just to get through it all.
‘I was always a bit of a perfectionist before that … I was the A-grade student, the genius … over-achiever. I skipped grades in school and was going through accelerated learning classes, all that kind of stuff. But I made a decision there and then that I was going to be perfect at everything I did and not be a problem for Mum and Dad because they had enough on their plate.’
He indicates his home. ‘From then on you can see what I’ve done with my life. That’s where it comes from.’
But James concedes that prospering professionally and financially don’t equate to emotional success. He inhabits what he describes as the biggest house in the suburb, ‘and I’m on my own’. He has a tight-knit group of friends, whom he loves dearly, but he doesn’t have a partner or kids.
‘Do you wish you could have done things differently along the way?’ I ask. ‘Do you feel like this single-minded focus has stopped you from having those things?’
‘Not stopped me. I’ve made decisions that at the time seemed like the right decisions but I don’t regret those decisions. Had I been in a different space psychologically I may have done things differently. There were people in my life that I turned from and walked away.’
This includes partners with some major issues – alcohol dependency or a particular mindset. ‘I would have done things slightly differently, but not massively. The decisions I made were based upon the person I was and the situation I was in at the time.’
I get the impression that James, being a manager of people in business, manages his own life well. Or perhaps curates it. A moment later he explains, ‘I’ve always been the go-to guy, the g
uy that solves the problems, the guy at the top of the food chain. There isn’t anyone I report to; [in] any job I’ve ever done, I’ve been the lead consultant, the manager, the head of whatever. For me the penny drops in any situation. Very rarely do I not see an issue and know the answer straightaway – and that’s not conceited, it’s just a developed observation. Because my brain works differently to most.’
He admits to some awkwardness in how he deals with others. But with me he says he is comfortable sharing these stories with emotion attached rather than the copy-paste version you give some people. He vividly recalls formative events, including how, as a kid, he’d get a clip across the ear, or a spank. ‘And my father grew up that way, my mum grew up that way. I wouldn’t do it with my kids. I’d be tempted to but I wouldn’t. I’d let them know I grew up differently, but I’m going to do things differently … But I remember the power shift, like I grew up and was a fairly big, strong boy, and there was a time that my father rose his hand to me when I was sixteen or seventeen, and I stood my ground and I fronted up to him, chest out to him. And it was a change, an immediate change. All of a sudden I was a peer. Like I was still his son but I was not going to stand for it anymore.
‘I feel incredibly emotional about it because I carry around this veiled guilt that I emasculated my dad; and I know it not to be true, but I look back on it and I think, oh fuck, I wish I could undo that, I wish I could.’
It was a big thing for James; it still makes him emotional. It makes me think of all of the emotional wrestling that comes with becoming a carer. How so many troublesome, painful memories must be put aside or dealt with in order to allow the relationship gears to change. What James is talking about is how his emotional, and physical, freedom came at the cost of his father’s; it is entirely universal. But there’s another memory that holds power for him. When his brother asked him if he wanted to say anything at their father’s funeral, his father’s comforting strength came to mind in the form of a resonant memory. ‘If I think about my dad, it’s the thing I think about first and foremost every time. It’s really, really important.’
Drives home on the weekend, from a barbecue or a short break, James always sat on the left-hand side because it was the safest seat should there be a car accident. He’d fall asleep, and when the family arrived home he’d be somewhere between sleep and awake. ‘And Dad would come round the back of the car and, in his big strong hands, he’d scoop us up one at a time out of the back seat of the car and carry us in and put us straight into bed. And that’s the thing I carry around for my entire life. I never felt more safe, more secure, more loved. Dad was pretty much a gentle kind of guy but the strength … That was when the capacity to love was most on show with my dad, when it was one on one. He was not a flashy guy, he was just very intelligent, but not flashy at all.’
‘It’s absolutely God’s waiting room’
A couple of years ago, Delma, who is sixty, and her partner, participated in a motorcycle ride around Australia. Her riding group of five people – all in their mid-fifties to mid-sixties –felt spritely and young in comparison to some of the other motorcyclists. Out there, she says, ‘the grey power’ was everywhere. ‘There’s people in their seventies going into their eighties out there; they’re travelling.’
She reflects on this because of what she knows to be true: that the moment you develop a health problem, the moment you suddenly find yourself needing to go to doctors, your whole world changes.
‘We can all be out there doing amazing things into our eighties, and truly up until eighty-four Mum was doing amazing things.’
We’re here to talk about her mother, Margaret, whom Delma was forced to place in a nursing home when Margaret’s dementia worsened and she required greater care.
‘Mum had always said in her healthy self that if she got dementia she just wanted someone to hit her over the head, just get rid of her, don’t let her go through that. And so to have to see her go through that, to have to see her wear the incontinence nappies and things like that – this was my mother, who was very proud of her appearance for a long, long time. This was so against everything that she believed in. But of course, that’s it. We don’t have those choices,’ Delma says.
She acknowledges her mother’s feelings; you’d like to have a choice, she says. ‘No one wants to die painfully … and in the end for Mum it was quite painful. She’s a fighter and she really did fight until the end. She’d broken a hip in a fall, she had heart problems. You know she was in quite a bit of pain … no one wants to see anyone like that. I don’t want to go out like that. But I think the other thing I’ve realised is that very few people get to just close their eyes and go peacefully in the night.’
Delma, like James, is still in a state of mourning when we connect, following the recent death of Margaret. Not that she’s lost her sense of humour: when I ask her to introduce herself – name, age, profession, and so on – she tells me she’s a ‘domestic goddess’.
Delma’s father, Ron, has been gone twenty-nine years and she still mourns him. ‘I miss him. Every day I think about my father. So that was really difficult. Mum, we had a very different relationship. Obviously I’m still thinking about her now; it is still quite fresh.’
She says she was her father’s little girl. She and her mother ‘were never the closest’. ‘But we respected each other and we got on and I was the carer from the time my father left – you know how it is: daughters always are.’
Daughters – yes, a regular presence. Atul Gawande notes that the chances of avoiding nursing homes increase with having kids, especially a daughter. Most people I speak to believe this to be the case. In fact, they argue that cultural differences melt away. They argue that, in terms of being a carer, culture differences aren’t as important as gender; that gender defines how children cope with their ageing parents. Visiting a retirement village, this was further affirmed when the owner, Chiou See Anderson, told me that in the two instances when a resident left, ‘Both times they left willingly, and both times assisted by their daughters. I think in this conversation daughters are still probably more involved.’
In my search for stories, not only were the carers more often women than men, but many were acting as carers in addition to other responsibilities. The sandwich generation comprises many such women, who also have to deal with the emotional aspects of their role.
‘I didn’t dislike my mother, but if my mother hadn’t been my mother we probably wouldn’t have been [great friends]: politically poles apart, different views, different opinions,’ Delma continues. ‘But we had a relationship. We were able to discuss things, talk with each other, disagree on things … She was always a very strong person, a really strong person, and that’s where it’s really difficult to watch the decline there. They just turn into something completely alien from this person that you knew.’
But, as Delma points out, it’s not just the emotional aspect that is difficult in a parent’s decline. ‘We all have busy lives, and it’s hard enough looking after your own stuff and family and whatever, without taking on someone else’s.’ Delma has an intellectually disabled brother, Owen, for whom both she and her brother, Peter, are guardians. ‘Even though he’s in independent housing we’re responsible for him; we’re responsible for his medical and financial needs.’ It places pressure on families, and brews feelings of guilt.
When Margaret went into the nursing home in Canberra, Delma was in Melbourne. ‘I was there once a month and it doesn’t matter how good the care is, you feel guilty you’re not there. They need someone they know – on and on and on it goes.’
Still, Delma says that even if she lived close to her mother, she required the services of a nursing home. It was the only place that was right for her.
‘We all face it, we all go through that. We’re children and then we bring up our children, and then we look after our parents. It comes to most of us at some stage, it really does. It’s a difficult thing … because no matter how much you don’t want
it to happen, you always end up behaving like the parent to your parent. And it’s not right. It isn’t right … they are individuals, they should still be treated as individuals.’
Delma’s experience as a carer is an interesting and long-ranging one. Dealing with ageing parents for her really began when her father passed away in 1988.
‘My mother was just sixty then, so a year younger than I am now, and a very different time, I guess.’
Her mother was guardian of Owen. Delma took on the everyday responsibilities of a helpful daughter: she was living close to her mother, so she helped with grocery shopping, getting anything Margaret needed for the house, or garden supplies. Delma eventually moved away, as her mother was capable at the time. ‘She didn’t drive … and she never really did her own grocery shopping, Dad had always done the grocery shopping. But Mum was perfectly capable.’
Owen had a bicycle accident that left him bedridden for quite some time with a broken ball joint in his hip. Delma moved in with her mother to help take care of him. A few years later her mother had to have a hip replacement so Delma moved in again. All of this happened within five years of her father’s death.
Owen was in assisted housing, but following the death of Delma’s father, her mother worked hard to get Owen back into her house, which she did. ‘So it became a matter of trying to manage looking after her when she needed it, but also being there for Owen.’
Her mother, Delma says, coped well until she was in her mid-seventies. ‘She really was quite independent, and cognitively all there. She was diagnosed with a bowel tumour in 2006. She was seventy-eight. And probably a really lucky thing for both my brothers and I because it turns out we had that horrible gene. So we all have our fabulous colonoscopies.’
Family (medical) inheritance. Delma’s not the only one to have unearthed one. Louise*, a woman in her late thirties who had stage four uterine cancer, similarly discovered troublesome genes, which led to revelations for her own sister.
