by Amal Awad
The recent death of a young relative sent the older generation in her extended family spiralling. Emma says that was when the reality of her growing responsibilities hit her. She and another relative had to take care of the funeral. ‘We suddenly realised that the adults were falling apart. We had to do all the adulting stuff to look after the adults.’
The moment held a currency of surprise – when did she become the adult?
Not that Emma is a stranger to grief and loss. In her early twenties she lost her mother to cancer, relatively quickly. It was traumatic. Emma, a mother herself, observes, ‘Grief as a parent is different because you’ve got to contain and manage, because you’ve got to be a parent first – you can’t just break down when [the children] are around. Because that impacts on them, so that was a real adult experience compared to my early grief. With Mum, where you just broke down, you could do whatever you wanted in that sense.’
Emma is a counsellor. She understands the workings of grief, how it afflicts people, and what coping mechanisms they may latch onto to find relief. It’s different when it’s happening to you, though; nothing can inoculate you from feeling the full strength of the anguish. ‘There’s a lot of grief in a lot of people’s lives that I deal with. You lose health, older people are grieving the loss of their independence and then their health, the loss of their youth.’
‘Has dealing with other people’s grief taught you anything about grief?’ I query.
‘Yes. That people are resilient. A lot of people are way more resilient than I am, or will ever be, probably … And people’s ability to survive, and their will to survive. And the hope of human connectedness.’
Emma is ‘sandwich generation’ – a mother who helps care for her ageing father, Michael*. At one point they shared a home, but she has since moved out to accommodate her growing family. She has regular contact with her dad, who, like most men in their eighties, still potters about but endures health challenges. She wouldn’t define herself as a ‘carer’, though (too official). ‘I define it as helping him out, and I think that probably he wouldn’t like seeing it as that.’
It doesn’t help that he’s stubborn. Emma says that Michael doesn’t consider himself old. ‘I mean, it’s a relative thing, age, isn’t it?’ She laughs, recounts an exchange with him to demonstrate. ‘He used to go down to his old pub, and I said, “You haven’t been down there for a while,” and I thought it was because he couldn’t get up the stairs. And he said, “Oh no … there’s too many old people down there.”’
Emma is amused at her father’s inability to transition gracefully into older age. At the same time, his stubbornness and resistance to change can be irritating and frustrating. ‘I think it’s just a clinging on to youth and [avoiding] a loss of independence, which would be quite scary, I think, for someone who’s very independent.’
Her father lives alone, and he still drives. She expresses relief at not being given the responsibility of deciding whether or not he should continue to do so: ‘I think not driving would be massive for him.’
On the whole, Emma demonstrates a practical attitude. She doesn’t live with her father, but she’s not so far that she can’t be there for him. And she’s reflective about what her father’s age represents. ‘I think ageing, to a degree, is a privilege, and I’ll be very grateful if I get to my dad’s age,’ she says, reflecting on the relative youth of her mother when she died.
Like many people I met with, Emma isn’t necessarily afraid of her own death; she worries more about the impact it would have on her children and partner. Nor did her mother’s premature death inoculate her. ‘There’s the pros of it, because I think all people’s experiences are different, but I think it gives you the heads-up on what a grieving process looks like. Your first one’s a bit like anything – you don’t really know what you’re in for, and once you’ve had that experience, and then you have another death, I think you’re a bit more experienced in what the waves of grief might look like,’ she says. ‘It’s like a dipping. I think you dip in and out of grief.’
Emma’s work is in the area of interpersonal violence, including against older people. ‘There’s lots of aged people in personal-violence relationships. Absolutely. Whether there’s domestic violence, whether there’s family violence, from the children, sexual assault …’
But, she says, publicly people never talk about it. ‘The fact that people don’t even think about, but one of the things that’s coming up for me is that I’m seeing people in aged care homes quite vulnerable to violence.’
Elder abuse is massive, Emma says.
‘Who’s committing the violence against them? Are they strangers or are they family?’ I ask.
‘Children, caregivers, professionals potentially, partners,’ Emma responds. ‘Certainly I think there’s an idea that your children wouldn’t necessarily do that, but that’s coming from the perspective that the family unit’s functional. And not everybody has their parents’ best interests at heart.’
Elder abuse can occur through violence or mental abuse, or take the form of financial abuse. Emma points to a common imbalance of power, where a parent has signed power-of-attorney over to a child, who is then empowered to make financial and legal decisions on their behalf when the parent is deemed unfit to do so. ‘I think the vast majority of people who make decisions do so genuinely in that person’s best interest, but there would absolutely be people who would abuse that.’
Lesley, a retired nurse with decades of experience, saw how abuse played out in ways that affected the daily lives of people in nursing homes.
‘I was a matron in a nursing home when I was studying in the nineteen-seventies. People, couples, would form friendships, and sometimes they wanted to get married, even though they were eighty. But you would find, not uncommonly, relatives moved their relative into another nursing home, and that was clearly about inheritance. They didn’t want them to marry again because that would halve the inheritance and cause big problems,’ she says.
‘We had that in the nursing home I was working at, where the family immediately separated [the couple] – usually the person with the most money. Moved that mother or father to another nursing home and broke up the relationship, which was very sad when they’d found a great companion.’
I spoke to numerous aged care workers, and most suggested that the days of elder abuse were past. However, in 2018 damning media investigations uncovered terrible abuse in some aged care facilities. While there have been reports in the past of financial abuse, and aged care workers operating under extremely difficult conditions, an ABC Four Corners investigation revealed the extent of physical and verbal abuse elder residents and patients can suffer.
In the weeks after the program went to air, with many families opening up to media about their experiences with aged care and nursing home facilities, the Federal Government announced a Royal Commission into Aged Care Quality and Safety. ‘This follows more than 5000 submissions received from aged care consumers, families, carers, aged care workers, health professionals and providers,’ the Australian Government’s Department of Health posted on its website.
Of the aged care workers I spoke to, some indeed indicated that elder abuse does still occur due to numerous potential factors: stress on the job, lack of training, difficult residents. Carla* said that accusations against staff of theft are common from family members of dementia patients. And they were specific, in her experience. ‘I was never accused of it,’ she told me, pointedly.
Emma ventures into another important aspect of how we age – social interaction. Michael is still a social person, but the dynamics of this have changed – he relies more on people visiting him rather than him going out to meet friends.
‘When you think of your dad, what are your concerns at the moment, and what are your hopes?’
‘My concern for him is that his health would deteriorate and his quality of life would decline, and for him that would be really frustrating and isolating.’
You lose your friends as you become older, Emma notes. You go to a few funerals and the circle diminishes. ‘I remember [Dad] saying to me, not recently but a few years ago, that it hit him when he’d heard of someone else that died. He kind of realised, “Ah, well, I can’t call any of the people to tell them because they’re all dead too.”’
Connections severed by the natural course of life. It can be distressing. Emma believes the loneliness is even more debilitating for men. ‘Because I think men, their sense of relativeness to others, maybe friendships, may be different than women.’
She feels that her father may garner less sympathy or attention from people because ‘he’s aged so well’, relatively speaking. ‘I’ve been guilty of that, too,’ she says. ‘Recently that’s changed, but up until probably a few years ago, you’re kind of like, “Oh, come on, Dad,” because he’s so well and capable. You forget that he’s actually older and things do take longer and … it’s only when there was the decline, I suddenly went, oh shit, that’s right, he probably can’t walk that fast anymore, or he probably needs to start doing all these things differently.’
When Emma and her family lived with her father, she says he was quite independent. It was a neutral space – she wasn’t a carer as such, but she identified potential ‘needs in disguise’. Emma says there is often a focus on looking at how much a person can physically do on their own – things like household chores, shopping and cooking – and seeing that they can get around on their own. Visible things. But perhaps more focus is needed on how many people someone has to talk to, on not being isolated. ‘And I wonder sometimes whether requests for help, not that it’s framed like that, and who they’re to, are actually not about the request, but some kind of need.’
She makes a pertinent point. You become fluent in a new language when you spend more time with your parents; you look for signs of embedded issues, things that perhaps they are not even aware are issues. Often you’re not going to need to dig deep to discover what might be more obvious to an external observer, like a request for shopping and a visit equating to a desire for greater connection.
‘But it’s a huge need – connecting to humans, and having a sense of worth and value and purpose, and all those things change as you get older.’
My own father’s self-worth is so deeply entwined with his career, so connected to his role as a breadwinner. How many people have I spoken to who offer similar observations?
‘I suppose if they’ve been working full time, then a lot of their value or purpose falls around them being a breadwinner and then providing for their family,’ says Emma, ‘so retiring is probably a significant let-down, because what does life mean? What’s the purpose and value now? This is what I valued for the last forty years of my life, it gave me purpose and drive – but what’s that now?’
Emma doesn’t rule out living with her father again, but it’s complicated, a situation laced with certain challenges because, as a woman, she has competing interests, ‘a tug of war’ between her role as a mother and her place as a daughter. She has a sibling who helps, but in less visible ways. ‘I go over there and I’ll see how many meals my father’s got in the fridge and just stuff like that, or empty the bin if it needs emptying …’
For now, she’s focused on her father receiving help. She recently registered Michael for a comprehensive assessment by the Aged Care Assessment Team (ACAT), a government initiative to determine eligibility for funding assistance. ‘They do an assessment, and it’s for overall functioning and what potential support the person may need – whether it’s at home or in a nursing home – so for any kind of transition to more supportive housing or needs.’
The ACAT is an important function for the elderly and their family, carers included. It involves an assessment of physical and psychological needs before a funding package can be assigned. But the process is riddled with issues, including long waits. Applying might not take an inordinate amount of time, but you can literally wait years.
Em advocates government intervention – systems and processes that are easier and much friendlier to work with –to allow people to look after their parents or the elderly. He says the elderly people he deals with are at a very vulnerable stage of their lives. ‘They don’t know what’s going to happen to them tomorrow. They don’t know what’s going to happen to their spouse. They don’t know if they’re going to be alone, and for how long, and when. There’s a whole lot of things that enter their lives, that for some people [are] very difficult to understand.’
He circles back to a crucial point: the importance of empathy. He is talking generally here. Empathy on a wider scale, across society, not just by carers or within families. As a carer, Em says his job is not to be a therapist. But, as he did in his finance days, he approaches his work ready to offer emotional support. ‘I’m here to listen,’ he says.
‘It’s like the well’s empty’
‘You just reminded me that I’m supposed to ring my mother,’ Danielle* tells me when we sit down for coffee in a bustling Sydney café on a weekday morning. It’s a busy time for her, a writer whose career is expanding in all the right ways. She’s stressed – a lot of work, a lot of balls in the air. ‘I’m also a mother, and I’m the breadwinner in my family, so all the things that are happening to me work-wise and career-wise have a knock-on effect on my partner, who’s just been made redundant. And because she’s much older, she’s sixty-five, she won’t be able to easily get a new job, so …’
Danielle is also dealing with her mother being unwell; she’s dying of metastasised ovarian cancer. The initial shock has worn off. ‘But my mother’s perspective was, “Oh, great, I’m dying. I’m so happy because I’ve got cancer, now I don’t have to kill myself.” So, the next emotion that I have out of it is, “How terrible that my mother’s got such a sad and awful life that she would rather die of cancer than …” That she’s happy that she’s dying of cancer – that is so awful. But what do you do with that?’
‘Is it true?’
‘I think she’s been in a bit of denial, and also she’s an attention seeker, but … She has been claiming to be suicidal for a long time, and she was cutting herself.’
Before the diagnosis Danielle’s mother was cutting her arms, which led to two hospital visits and more than fifty stitches each time. ‘She’s had emotional and mental issues her whole life because she was abused by her father.’
Danielle has recently returned from London – an ‘amazing experience’, the kind that makes dreams a reality, but which also requires the sacrifice of being separated from her family, particularly if a longer-term stay in the UK is later required. ‘And there is no way I can say no to that because of all the other factors in my life, but of course I’m already thinking that my Mum is dying …’
She describes a somewhat topsy-turvy life. She left school in Year 10 to become an actress. ‘In those days, nobody stayed at school unless they were really super-academic. So, I was fifteen years old and I got a job, so I was basically self-sufficient. My parents never pushed me to do anything career-wise … Dad used to say, “Dream on,” but my mother in particular was always encouraging of me to do my writing and to do anything that made me happy.’
Their relationship has its share of troubles, but Danielle’s mother is supportive. Danielle recalls an emotional moment when she got back from London.
‘I’ve had this wonderful trip and these wonderful things happening, and of course my mum was very excited, and the first day we all had breakfast together so that we could see each other, and my mum hugged me in the restaurant. Now, she’s actually not a crier. She seldom cries, but when she hugged me in the restaurant, she said, “Oh, I’m so proud of you,” and then she burst into tears, and I did, too.’
Danielle takes a moment. ‘I cried on and off for the rest of that day, because even though I very rarely have any feelings about my mum in that way – any feelings that I actually have an emotional response to – I knew she was crying because she was never going to
see my book made into a TV series. It’s one of the great pleasures of her life to share my work, and one of the only areas we connect in, so the sadness around the fact that it was something we could share and genuinely enjoy with each other was never going to be.’
In that moment, Danielle says, her mother suddenly felt scared and upset. ‘That was the trigger point for her to suddenly realise, maybe I’m not happy I’m dying.’
‘She wants to live.’
‘And she had to get there … That would have had to happen, I think, at some point, because you can’t hang on to that, the denial. Maybe some people can all the way through, but I don’t think she would … That was sad.’ But Danielle confesses she’s glad to have felt that strong burst of emotion.
What worries her, though, is her mother’s desire that Danielle join her at doctor’s appointments. She doesn’t have the time, and doesn’t believe she needs to be there. Her mother, she thinks, just wants an audience. ‘So when I can’t come she takes her best friend or an aunt or whatever – to every doctor’s appointment, of which there are many. Her pleasure is in talking about herself and all of her bowel movements and all these sorts of grotesque physical things that she can talk about, and have someone there who’s listening. I don’t have a lot of patience with that because I just feel like it’s indulgent, and yet I’m trying to be present for it as often as I can because it means so much to her and it is the only thing that I can give her.’
Still, Danielle spends more time with her mother now, and rings her more often as well, while carefully maintaining her boundaries around her time.
‘I feel guilty, but I never let it get in my way. My mum wants me to do stuff, but she is really understanding. I just always have that boundary, and at a certain point … I am the sole income earner in my family. So I can’t sacrifice my family’s wellbeing for my mother’s. Going back to that, she didn’t sacrifice hers for me,’ says Danielle. ‘I think that’s what happens to people. You get out of your children what you put in early.’
