by Amal Awad
Still, Danielle’s mother’s diagnosis put a new spin on everything – she doesn’t get the twenty extra years she expected to have with her mother, who is seventy-five. ‘Even when she breaks her leg, she’ll just keep walking. She’s a very strong person. So, to have her at quite a young age be dying –it was a shock.’
For Danielle, childhood was a difficult period. When she was a baby her mother sent her to a foster family, taking her back when she was four and a half. ‘That was an incredibly traumatic experience, both ends of that, and from that, over the years I’ve discovered that I have a lot of damage from it, and our relationship was damaged by it.’
Danielle’s mother is in the top 1 per cent of the population in her IQ; she’s intelligent, but on an emotional scale less so. ‘What can I say? She’s applied her intelligence into learning how to act in the world and do the right things by watching everybody else, but she isn’t very good at actually having true emotions. So, she’s been a tricky mum.’
Danielle’s parents’ marriage didn’t last long. ‘They really didn’t like each other. Then he married her sister, which is weird.’
When her mother took Danielle out of the foster home, she remarried, to a man who became Danielle’s stepfather. He was a lovely man, Danielle says, and it was a lovely marriage. ‘But he died twelve years ago and she’s never recovered because … They didn’t have any friends, they just had each other, and he was her audience. So, without an audience in your house it’s very difficult because all of your madness comes to the fore in public. She goes out attention-seeking in every possible way she can because she’s not getting anything at home.’
Danielle indicates two positive prongs to her relationship with her mother: she could always rely upon her; and ‘a very good and positive relationship’ existed in her mother’s support of Danielle in her career. ‘She is nothing but supportive, enthusiastic, proud, and positive. Also, incredibly unselfish in terms of wanting me to achieve my goals, regardless of what that means for her.’
However, when Danielle was a child her mother wasn’t able to provide emotional support. And now, Danielle admits she struggles to offer it in return. ‘I don’t have a well or a reservoir of emotional support for her, and I really have felt empty of it. She couldn’t be sympathetic of anything. If I cut myself or hurt myself, she’d go, “Oh, you’re so lucky.” She was never able to just sympathise. If I was sick, she’d be gritting her teeth and doing the housework because she would be really upset that she hadn’t gone to work. She wasn’t a warm, sympathetic, genuinely emotionally attached mum.’
I remark that her mother sounds like someone who was uncomfortable being a mother.
‘She didn’t know how to … she was just acting. She was role-playing Mother the best she could, and she actually wasn’t capable of anything more. What I have thought over the years is that, because she didn’t pour anything in, there’s nothing there to draw from. It’s like the well’s empty … I can do what any human being would do for another human being, and someone that they love and care about, but there’s not a lot there that I could draw on to go, “I want to give up and sacrifice everything of mine to help my mum.” I don’t have that.’
But her emotional supply is otherwise plentiful. Danielle hasn’t emerged from these scarring experiences devoid of emotion. She says she is bonded to her child.
‘I may be repeating my mother’s mistakes, but I really wanted to stay home with my child, and I did as much as I could, and I was heartbroken when I had to go back to work. I never really got over it. That first breaking of the bond when I had to go back to work was really hard.’
Danielle’s plan to spend more time with her mother involves outings to the movies every Thursday night. Her mother has recently come out of a respite period in palliative care, and at the cinema they can talk together freely. Danielle can even talk to her mum about death, ask her questions about how she’s feeling, what she believes about an afterlife, her fears.
‘So you can do that now?’
‘I’ve been doing it from the moment we started going to movies. I always ask her outright, “How are you feeling? Are you afraid of dying?” I think that helps the process because there’s nothing hidden and nothing unsaid, and I don’t feel like, oh, I wonder if Mum’s scared or upset. I know when she’s scared and I know when she’s okay.’
Having open communication means being able to actually ask those terrible questions, but also talk about practical matters, even money and inheritance. Danielle, for example, was able to discuss her mother’s plan to split her estate unevenly, in favour of her brother. Danielle’s brother stayed with his and Danielle’s biological father from the age of three. Danielle says her mother and brother ‘had a personality clash … She gave him to my father because they didn’t get on. And so, this is the sort of mother she was.’
Danielle’s brother has been an alcoholic, and he also has complications from chronic illness. ‘But he’s been … very supportive and trying to be much more part of this situation with Mum. But he’s quite pompous, and he’s not very insightful to our mother because he didn’t grow up with her. He hates it when she says she just wants to die and she’s not having any treatment. I’ve had to kind of counsel him around to say that it’s not his position to stomp and stamp and say what he thinks is right; he has to respect what Mum wants.’
Danielle says he’s a nice man but, ‘I have a lot of emotional separation from my family … It’s an effort for me to put in time and energy to them, with the exception of my aunt.’
Danielle calling her mother on the disparity in her split of her mum’s estate delivered a fair result. Her mother has decided to divide everything evenly. ‘I don’t want more. I just want an absolute split.’
‘Is there anything you wish you could say to her that might give you peace with the past?’ I venture.
‘I’ve already said all those things before she was dying. We’ve had a lot of conversations about all of the things that she did, but also understanding that she did what she did at the time because she believed it was the best thing to do. I have never had any doubt of that. She was never malicious …
‘But, there are things that she can’t take on because she’s just not got the strength of character. She’s not got the self-insight to do it, but also, there’s a point at which you have to stop beating your mother up for her mistakes and just realise what was, was. But, luckily, I have had conversations that have been enough about that. I don’t feel I ever have to accuse her again of anything.’
Friday
Groundhog day: we are back in the hospital. This time there’s a fracture in Dad’s lower back in addition to the kidney failure. He can barely move without wincing. They want to figure out how well his heart is ticking along, as well. The doctor doesn’t think Dad needs a pacemaker, but there will be tests. Dad seems unperturbed. ‘We’re famous for our hearts,’ he says, matter-of-fact.
A doctor is cheerful, sweet with Dad. There’s something almost jovial about Dr B*. He’s young and doesn’t look worn down like others we’ve encountered.
I don’t want to seem like an annoying family member when he comes in, but then I think, why not? It’s okay to care. I’m mindful of not sounding accusatory or entitled. I focus on articulating as clearly as I can what he should know. I keep my questions, I hope, entirely relevant.
When Dad is resting, I sit with Mum in the cafeteria and we split a bagel and drink coffee. I generally only eat bagels at the hospital. It has kind of become a thing. I see a bagel and the hospital cafeteria comes to mind. Other scenes, now common, are burned into my brain. Familiar faces, like the old lady, so hunched over that from behind you can’t see her head, who is there every single day. The chatter. The snaking line of nurses and doctors in scrubs getting their lunch. The woman behind the counter who talks to me like a friend after she’s seen me every day for a week, and shares her own stories of dealing with illness and death, and the mounting grief that follows.
I used to find hospitals depressing. They used to pull me apart and stretch me out. But they’ve lost their power over me. I’m more grounded now. No longer feeling like a visitor, someone who has accidentally landed in the wrong spot. I don’t know how often I have come, nor what is to come. I know the guy at the parking station ticket window. If it’s been a while between visits, he looks surprised then delighted to see me.
And in these waiting periods, while Dad repairs, I sit with Mum and we talk.
Arabs are a superstitious lot. In the absence of a foreboding dream, we consult the residue of a coffee cup, scanning for clues in the thick mud that covers the interior. My mother does it out of habit. But she’s taken to reading the shapes in the foam of a latte, rather than the industrial coffee Arabs, Turks and Greeks like.
Some days she points out a fish leaping up out of the water – a good sign. Other days, it’s heads knitted together. A gathering?
Today, it’s a fighting kangaroo. ‘That’s me,’ Mum says, half-joking.
Mum and I talk about Dad. We talk about his resistance to what his body is trying to tell him. The way his mind seems to be in one place, his physical state another. The way it’s common. The differences between how women and men deal.
‘Women are more practical and resilient,’ declares Mum. ‘They can manage. They’ve spent their lives cooking and cleaning, looking after the family. So they know how to cope.’
I ponder this for a moment and recognise that there’s some truth to it. Often I’ve heard people talk about how quickly men, broadly speaking, move on after a divorce and remarry. ‘They can’t be alone’ is how it’s described.
Then again, when you’re ill I wonder if there’s any way to surmount the loneliness of it. This is what I try to help my father with. He has my mother’s companionship, her care, but he lights up when I arrive to take them out.
‘I love having breakfast with you,’ he tells me one Friday. ‘I wish you could join us every day.’
‘You are never putting me in a nursing home’
Gillian* is a married woman in her forties, with children and a full-time job. She is also sharing a new house with her ageing parents – they’re on the bottom floor, her family occupies the second one. She’s another in the ‘sandwich generation’, but though she’s a mother to her own children, she jokingly complains that she is still being mothered. Sitting at a large wooden dining table in this new shared home, Gillian gives a relatable example of being lectured to ‘wear a jacket’ when she was on her way out with the kids. She erupts into laughter at the recollection.
Gillian’s parents are ageing but have had no major health scares. Some aches and pains with her mother and a major procedure that affects her mobility. Her father’s had two procedures. But her father is ‘a man’s man’. He thinks he’s a twenty-year-old and will recover like one, Gillian says with a laugh.
Meanwhile he’s been diagnosed with industrial deafness and won’t do anything about it. Because of his poor hearing, minor things can become arguments. ‘That’s what frustrates me,’ she says, a nerviness to her narrative emerging.
Still, living with her parents means she can be more alert to shifts in their health. She can already see that, in future, she will be on call for them more, particularly regarding their mobility. Gillian says there’s no denial about this on her parents’ part. They can look after themselves, but they need help. Her mother doesn’t drive and when her father was in hospital she needed to take time off work to help her mum. Nor does she like her father to drive at night. ‘If we go somewhere, even before I lived here I would pick them up.’
Central to the decision to create a home together is her parents’ desire not to move into a nursing home. Her paternal grandmother saw the end of her life in one and Gillian grew up with the refrain ‘You are never putting me in a nursing home.’
Gillian doesn’t have the best of relationships with her brother. He speaks to his parents, but the burden rests on her to look after them. It helps that her family is supportive and engaged – her husband even helps with shepherding her parents to appointments when she can’t, thanks to a flexible job. He helps with cooking for the family.
Certainly there were teething problems. Her father, a sociable man with a bit of a temper, had difficulty handling the construction phase. He wanted a whole new house without the effort.
‘Basically didn’t lift a finger to pack and … my mother is a hoarder. Like, I found an envelope … “Gillian’s teeth”. That was just the start.’
So it wasn’t simply about constructing a new home, but sifting through a jam-packed former one. ‘That was quite traumatic … and Mum was crying all the time, memories and this and that and finding things …’
Her mother was only just a World War Two baby, but Gillian says she’s like a child of the Great Depression. ‘Nothing can go to waste.’
For some, childhood issues rise to the surface the more we deal with our parents. These issues may appear differently, diluted in some ways: you might feel forced into a new relationship with parents whom you have unresolved issues with, and a new understanding is formed. It can invite resolution.
‘There’s a lot of running up the stairs,’ says Gillian of how she releases the angst. A way to flatten out the tension. ‘But I need to not personalise it all the time, and then try and think about it from their point of view as well.’
She confesses to feeling guilt about her parents’ sacrifice in building the house. She tears up. I suggest that with her presence she’s giving her parents something valuable in return, and she agrees, recalling how her father has always liked his kids being around, to know where they are, what they’re doing. ‘That doesn’t necessarily mean he wants to talk to us all the time,’ she says, laughing. ‘He just wants us there.’
Gillian’s pathway is packed with commitments to others. She has many people and needs to manage. I ask her how she ensures she doesn’t lose sight of herself completely in this new stretch of life.
‘I’m working towards that,’ she says in a small voice. She has taken up yoga – just a beginner course that runs for six weeks – and completed postgraduate studies last year. ‘I’ve started to read a lot more. It has been quite good with everyone’s little spaces to go into that I can do that.’
‘If I start working, what’s going to happen to my parents?’
Carla* doesn’t live with her parents, but she has become the equivalent of their full-time carer. Married, with a teenage son, she suffered a workplace injury around the same time as her parents retired. ‘It’s very busy and stressful,’ she tells me over dinner. She’s enjoying the warm summer night, her relaxed posture like a massive exhalation. She’s treating herself to a drink or two; it’s been a long … well, few years.
Carla was an aged care worker who visited the elderly in their homes and helped with chores – taking them to the shops or for a walk in the park. She says it became more of a domestic cleaning job than caring, and after her warnings that she was unable to carry the weight of a client who needed help getting in and out of the car fell on deaf ears, she was injured. Carla was beset by the stress of insurance negotiations and ultimately didn’t get workers’ compensation for her chronic pain condition. She’s on painkillers.
That she’s under pressure is evident. She drives her parents to doctor appointments, specialists, the hospital. She’s had to reorganise certain things – arranging a clinic visit because her mother hasn’t provided the right information, or hasn’t understood the doctor because English is her second language.
Carla has a good relationship with her siblings, but both work full time and can’t assist in the way she can. She has a supportive husband, who will step up to help ferry her parents to appointments if she can’t do it. Her son also takes responsibility, something she encourages. But still the burden is primarily on Carla. She tells me she was exhausted after a specialist appointment two days ago, ‘like I was running a marathon’.
‘My mum does
n’t help much.’ Her mother talks a lot, moves a lot. On a forty-five-minute drive, her mother didn’t stop talking or fidgeting. Carla put it down to nerves. ‘Because she’s suffering from anxiety and depression at a really high level. She has medication.’
Carla is also prone to depression and is taking medication to manage it, as well as anxiety. But she has to put all this behind her, she says, and keep going. She’s postponed looking for work. ‘If I start working, what’s going to happen to my parents? Who’s going to take them to the hospital? Who’s going to take them to their doctor’s appointments? Who’s going to take them? Nobody’s going to take them.’
She’s also a bit of a boss. What she says stands, and being a carer for the elderly has plumped up her authority in that respect. Her parents have no choice but to listen. And they do listen to her advice. They’re a bit forgetful, though. They repeat stories. ‘That’s the time I feel like, “Oh god, they’re getting old.” It scares me and I feel a little bit sad. You don’t want your parents to get old, because when they’re getting old you know what’s going to happen, and you never want that to happen to your parents. At least not me.’
She understands ‘it’s life’, but she feels tired at times, too tired to attend to her own life. The feeling that occasionally rises of determination – that she’s going to stop neglecting herself – doesn’t last. She feels stuck.
Carla finds relief in activity. She does Zumba. ‘It’s the only time I feel I’m doing something for me. Just me. And because I enjoy it … for two hours I don’t think about anybody else …’ She first embraced it because she was overweight and not in a good mental state. ‘I didn’t want to end up like Mum with depression or like my dad with his chronic conditions.’
Grief. Hope. Coping mechanisms. How to deal.
Reflecting on Carla’s simple solution, I am reminded that humans have an admirable capacity to manage the storms of life. But it is more than that. How many of us who are caring for others are actually on a quest to progress beyond their stories? To dissolve the hold our parents’ struggles have on us, and how they shape our own experiences? Alongside our caring duties, how many of us believe we can have a peaceful, content life?
