The phone call came in mid-2016. “I’ve got cancer,” the old woman announced. Kathy*, a small business consultant, lived in Sydney. Her widowed mother, then in her 80s, lived in a large regional town four hours’ drive away.
For the next five years, Kathy became her mother’s drive-in, drive-out carer, clocking up thousands of kilometres on her odometer.
One of her two sisters contributed some assistance but it was Kathy who slept in hospital beside her mother through various admissions. It was Kathy who took over her mother’s finances and the burden of keeping her in her large two-storey home as she became frailer and sicker.
But there was no loving mother-daughter relationship to buttress the load.
“A friend of mine said to me, ‘you just keep going back for more punishment’,” Kathy says. “But I didn’t actually see it like that; I didn’t see it as a duty but as a kindness.”
Kathy’s kindness is striking: from the time she was a child, her capricious mother’s weapons of choice were a cruel tongue and extended silences. “It was always unstable ground, it was always criticism and undermining,” Kathy says. For some years before her mother became ill, Kathy had disconnected herself from her family. “There was very little communication.”
Now, looking back on the years she cared for her mother, who died in 2022, Kathy feels exhausted. “It’s not that I enjoyed doing it; it was something I thought was the right thing to do.”
Caring for ageing parents is difficult in the best circumstances – when relationships are loving and siblings are collaborative. But for those who have had complicated relationships with their parents, especially those characterised by abuse, trauma or periods of estrangement – or simply a feeling that you weren’t very well cared for yourself – it can be far more complex.
“A lot of people find it difficult at the best of times to come to terms with their parents’ frailty and needs but when you add to that relationship difficulties, or perhaps the parents never accepted that person’s choice of partner or their sexuality or their decisions in life or how they use their money, all those kind of things can come up and create additional tensions,” says UNSW Sydney professor of sociology Emma Kirby.
“We carry this assumption that caring for your parents is the most normal, safe dynamic but this paints over instances of often decades-long abuse.”
Kirby has also seen situations in which elderly parents suffering cognitive impairments will become perpetrators of abuse, either for the first time, or by rekindling old behaviours.
“Different forms of cognitive impairment, dementia, Alzheimer’s, different illnesses and diseases and frailties, manifest in very complicated ways over time and that can play out in anger, in resentment, in frustration, that often the carers have to bear the brunt of,” Kirby says. On a handful of occasions she’s seen an elderly person’s frustrations about their decline and their need for care play out in physical expressions of anger.
The adult child might simultaneously have to manage significant abuse, provide close personal care and navigate emotional issues dating back to childhood or adolescence, she says. “There’s a lot of reliving of old triggers and traumas and old arguments or positioning or repositioning, which is really difficult.”
***
Only in recent years has Helen*, an obstetrician, come to understand that elements of her upbringing were abusive. Her parents gave her scant attention while her bullying older brother was the golden child. “Every day for as long as I can remember, he told me how fat, stupid and ugly I was. He hit me a lot as well. When I told my mother, she said, ‘you’re too sensitive, that’s what brothers do’. My mum doesn’t do emotions, she’s not affectionate.”
Even now, on the rare occasions the family is together, Helen says her brother derides her and her father criticises her.
Helen has tried establishing boundaries but it’s not easy. She lives near her parents, who are in their late 70s and still in their own home. Her father’s mobility has declined and he is becoming increasingly moody and aggressive – she sees signs of frontotemporal dementia – while her mother has emphysema and is likely to soon need oxygen. Helen helps with house maintenance and takes them to medical appointments.
Jobs come up interstate that she would consider but her parents’ needs are increasing. “I can’t leave them, I love them, they did the best they could … they didn’t set out to be shitty parents,” says Helen, who is single and without a strong support network. “But it’s complicated, they really did some fucking damage.”
Sign up for the Breaking News Australia emailSo now Helen avoids visiting, while her father has started guilt-tripping her: “[He] will say, ‘oh you could come over, you could ask us how we’re doing’. And I think, ‘mate, you’ve never shown one modicum of interest in my life ever’.”
Through her research into carers, grief and loss, Emma Kirby at the University of New South Wales in Sydney has seen the pressures that can arise when an ageing parent who might not have been the best carer themselves needs care. “Often, the care available elsewhere is objectively worse, which leaves people in a really difficult position, because they’re faced with complicated emotions around grief, loss, guilt, shame, obligation and reciprocity.”
An adult child who acknowledges they don’t want to take on caring responsibilities can feel deep guilt, as if they’re doing something wrong. “They will feel that that says something about them as a person, regardless of how their parents may have treated them, regardless of how complicated or difficult that relationship is,” Kirby says.
The tangled emotions also infect sibling relationships; tensions arise over who takes responsibility or whose job is considered too important to give up. “There are a lot of assumptions that almost funnel certain people into those obligations,” Kirby says.
Gery Karantzas, a professor of psychology at Deakin University, observes that filial obligation – an adult child’s sense of duty to care for a parent – is a powerful driving force. But that sense of duty can add to the burden. “[A carer] can feel that they engage in more self-sacrifice, they can experience their own mental health difficulties around that.”
And, he adds, “pretty much it’s the eldest daughter who gets [the job]”.
***
Hannah*, a school administrator in her late 30s who lives in regional Queensland, has carried that role since she was a teenager living with her difficult and hypercritical father and his new family. “As the oldest daughter, I just worked my ass off to keep the family together and to keep things smooth sailing and Dad happy, but his expectations were always so high.”
“It felt like I couldn’t get anything right,” she says of those years.
Hannah can now see that her father has mental health issues which worsened as time went on. “I don’t think he realised how scary he was, and he could just tear you to pieces with words. It could be quite sudden – he’d smack us on the head, my brother got smacked on the head a lot. Home felt very unsafe and unpredictable.”
In 2021, only a few months after Hannah had moved six hours away for a new job, her father had a severe stroke. Three months later, she quit her job and moved back.
One of her half-siblings was overseas while another was estranged from their father. Hannah’s younger brother talked about moving back to help but, in the end, she picked up the job. “It didn’t feel like there was much of a choice,” she says. “There was a little bit of outside pressure from other family as well – that it was the right thing to do.”
For three years, Hannah lived with her father and cared for him as his mobility declined. “I felt like I was just trying to push him along, to fight for himself, as well as cooking for him, and getting criticised for every meal and dealing with his grumpy moods.” When he was no longer able to get to the toilet without assistance, she realised that keeping him at home was no longer tenable.
“I definitely went down mentally and I’m on antidepressants now.”
Now he is in a care facility and she sees him about once a week. “I would love to visit him more but I literally don’t have the emotional energy for it.”
According to 2015 research, those with a history of parental abuse or neglect showed significantly more frequent depressive symptoms when providing care to their parent(s) compared with caregivers who had not experienced parental abuse or neglect. As Kathy and Helen have, Hannah has seen a psychologist for years.
“I’ve had to process a lot of resentment towards my brother,” Hannah says. “I really felt like I was in it on my own a lot of the time.”
She thinks about the emotional, relationship, career and financial impact her father has had on her life – both while growing up and in more recent years – and how things might have been. “I thought that I would probably just have had a lot more fun,” she says. “I’d love to have met someone. I definitely thought that I would have a family and money as well.”
She can now see that her father’s behaviour was frequently abusive but her emotions are complicated. “That wasn’t all there was to Dad, he was also this incredibly inspiring, creative, fun person.” Mostly now, her overriding feeling is of sadness. “I think about how much he lost – he was only 65 when he had the stroke.”
Karantzas says that carers have often done considerable “inner work” to understand and reconcile a parent’s difficult behaviour and their approach to caring is “values-based” – “they have a really strong value that they need to tend to their parent”.
It is what sustained Kathy through the years she cared for her elderly mother. She will not forget how her mother pitted her three daughters against each other when they were growing up, nor the time she arrived back from an overseas trip after high school and her mother fell about laughing.
“What have you done? You’re so fat,” her mother said. “After that, through the Christmas holidays, it would be, ‘no potatoes for you, or you shouldn’t go to that party until you’ve lost weight’.” At one point, Kathy’s mother didn’t speak to her for three years. “There were times when she’d just go cold and you didn’t know what you’d done.”
Over time, Kathy came to see that she was not to blame for her mother’s behaviour. “Caring for her was more about my own sense of self and my own value system.”
Nevertheless, on the day Kathy finally “got out of there” after her mother’s death, she had a new feeling. “I was driving out of the town and I have never ever felt such an enormous sense of lightness, this responsibility, it just isn’t mine any more. I don’t have to be a party to any of this rubbish, I’m totally free.”
*Names have been changed.
