Fridays with my Folks

by Amal Awad

  About the Book

  Amal Awad’s life changed forever when her father was diagnosed with kidney failure. It was a shock to see the impact it had on him, both physically and mentally, and the way the side effects trickled on to those around him. Work had always made him feel whole, and retirement was a challenge.

  On a mission to help her father and support her mother, Amal began spending Friday with her parents. She saw the gaps in discussion around age and illness. Amal’s personal experiences prompted her to explore how Australians are ageing, how illness affects the afflicted and those around them, and what solutions exist when hope seems lost.

  So many people are similarly navigating a new reality – weeks dotted with doctor appointments; conversations that deplete and reveal at the same time; reshaped family relationships. Amal speaks with doctors, nurses, an aged care psychologist, specialists, politicians, ageing people living alone and others in a retirement village, to gain insights and to consider solutions.

  At a time when ageism and health are high on the public’s radar, what we’re not always talking about is how to deal with the anxiety, depression and overall challenges that come with someone you love facing their mortality as their health declines.

  Fridays with My Folks shares heartfelt, honest stories that will help others who are in similar positions. People who are having to reorientate themselves when the boat has taken a battering and they have to take a new direction.

  This book stems from personal experiences, but it expands to a far more universal discussion about life, suffering and hope.

  CONTENTS

  Cover

  About the Book

  Title Page

  Dedication

  Epigraph

  Prologue

  1. Stories from fellow travellers

  2. I’ll get by with a little help from … the professionals

  3. A throne for the crone

  4. The medicine of life

  5. Fighting the nursing home fate

  6. Saying goodbye

  7. The natural cycles of life

  8. Retirement living

  9. On country

  10. Getting to know my parents

  Acknowledgements

  Also by Amal Awad

  Imprint

  Read more at Penguin Books Australia

  For my family

  I have been easy with trees

  Too long.

  Too familiar with mountains.

  Joy has been a habit.

  Now

  Suddenly

  This rain.

  –Rain, Jack Gilbert

  * = The names and details of some interviewees have been changed.

  PROLOGUE

  I will write the truth gently.

  Since I was a girl, I have admired the wedding photo that hangs on my parents’ bedroom wall. It has a surreal quality to it. It’s not black and white; rather, it’s been colourised in a way that makes it look more like a hyper-colour painting. My mother’s almond-shaped eyes, lined in black kohl, are the first thing you notice. But then, to the side, is my father, handsome and impossibly young, embracing her, beaming with pride.

  My mother looks glamorous, mature for her age and experience, and my father also captivates. Bright eyes, optimism and strength. That’s how I have always known him. Somehow invincible, even if he was a remote figure. He wasn’t demonstrative when I was growing up; he was matter of fact and deeply immersed in work.

  I stare at the wedding photo with fresh eyes now, because in 2013 my father was diagnosed with kidney failure.

  I was in my mid-thirties, in the process of immense personal change, when my world was turned upside down. Not just my world – that of my entire family. We quickly saw that life would evolve into a new reality. A schedule for my father filled with appointments rather than retirement luxuries. My brothers and I never without our phones in sight. Every year since has seen a longer visit to the hospital, always unexpected, a shattering of the peaceful revised norm.

  It does something to you. As resilient as I am, even I had to concede at one point that my emotions, turbulent and overwhelming, were a caution. But we are not alone. During one hospital visit for my father I found myself reaching out to friends, something I have always struggled with – asking for support, privately asking them to pray for my dad, for the whole family. I asked for positive vibes, healing – love in any form – to be telegraphed towards us.

  These were friends who themselves were navigating painful, disrupted realities, so I knew they would understand. Eventually, as we discussed the ins and outs of hospital visits, the time we put aside for our parents, I realised how many of us were experiencing similar issues. We half-jokingly compared schedules. Three appointments next week for Patty and her dad. Marcela has one. Lucky. Acquaintances, colleagues, strangers – they had their stories too, and they shared them easily, relieved to be unloading an experience that had felt isolating – as though they were speaking a language not everyone can understand. We were immediately connected. An ageing parent, someone we love not in perfect health –the war stories were fierce, painful. Maybe sharing them was not only connection but also a way of normalising things. The commonality helped. Friends helped. So did the therapist I finally acknowledged I must see, because life felt full, overwhelmingly so at times, and I realised how important it was to talk about things. To express fear so that it lost power rather than consumed me.

  There were dark moments, but I was strangely calm. Tired, probably overdosing on caffeine. But I was present, the daughter I needed to be for my father, and for my mother, Dad’s constant companion.

  For a time I retreated into my usual interests and stayed busy with work. Strangely, the activity that helped me best decompress was doing puzzles, usually a thousand pieces, which I put together while a TV show played in the background. It’s the therapy of them. Knowing that concentrated purpose and persistence pay off; that sliver of relief you feel each time you lock a piece into place. I wondered if there was a metaphor in my puzzles: it will all come together. Persistence that yields the desired results.

  Still, I was asking myself, how do we transform ourselves from children to people who care for a parent in a similar fashion as they cared for us?

  Although there are many books on ageing, it’s only when you are experiencing it for yourself, or with a close family member or friend, that you realise how painful and life-changing it is. Moreover, you come to understand how universal the story is: no matter how our winding paths vary or converge we are all born and one day we will all die; and fears around death and illness tend to be universal.

  As a writer and observer, I was naturally driven to record some of the stories my friends, and strangers, were sharing with me, to make sense of what was unfolding in my family’s life; and also to pull away the veils of mystery that surround ageing, and cause the anxiety that marbles into fear. There is pain and stigma associated with sickness and our bodies getting older, and they are experienced not just by the elderly. I felt strongly that it was time we all talked more about this and listened to others’ stories.

  Fridays

  I often think back to my father’s reaction to his diagnosis of kidney failure. ‘I’m going to stay hopeful,’ he told me. And his positivity worked – until he had to face the limitations of his body as it deteriorated. He was still driving, but less so. Still active, but things like getting to the mosque on a Friday became more difficult.

  I needed to see my parents more often, to take them places that would be harder to get to themselves. In a moment of inspiration I committed every Friday to them. I wanted them to have as much normality to hold on to as possible. I needed to ensure Dad could get to the mosque, and sit in the company
of other men in worship as he had always done. I wanted to be beside my mother, accompany her in the process of a changing lifestyle.

  My eldest brother, Alex, has claimed Sundays, with his wife Kelly and their children. My older brother Hossam spends a couple of days with Mum and Dad, too, traversing Sydney and finding new and interesting things to do. My younger brother, Anwar, cleverly brought the DVD box set into their lives, purchasing Columbo (which Mum and Dad have watched twice).

  And then there’s me, every Friday, exploring different possibilities, a dutiful, respectful daughter. I wondered at first if the Fridays made a difference. At the very start there was a teething process, resistance from my mother. She felt I was wasting my day (a sentiment I didn’t share). My father seemed fine with the arrangement – or at least he didn’t object to it. Considering it now, I think he was simply quiet, trying to make sense of things.

  Fridays began in this tentative way, like we were all trying out a new pair of shoes that should have been the right size, but felt a little too tight. Over time perhaps they’d stretch out, but for now the discomfort ran deep. Each week I looked for signs that Dad was back. This life-loving man who liked to talk, took pleasure in exploring Sydney, and enjoyed going out with my mother. So much quieter now.

  My parents brought me up in a loving but strict household: Dad always working, Mum always around. I spent many years negotiating my identity as a female Arab-Muslim in a conservative family. I was used to asking for permission for everything. I lived according to customs and cultural structures that meant I looked ahead to a future of being able to do whatever I liked – when I got married. So this was all new for me. How would our relationship change? I was no longer a timid daughter afraid of breaking the rules. I was a daughter facing change: being more helpful to her parents. Yet always a daughter.

  I’ll tell you what Fridays with my folks look like. At their best, we spend a day together that is filled with stories and reflections, as we take in Sydney. At their most interesting, I’m part-counsellor, part-observer, as my mother harvests her grief from the first thirty years of her time in Australia. As my father sits still in his quietness. Relief – that’s what they’re seeking in their outbursts and remembrances. The universe as jury, and it’s time for a hearing.

  Sometimes my parents just make me laugh. I think Mum likes to get a rise out of Dad. One day as she stares out the car window she tries to provoke him with an accusation. Something or other about men and how they don’t like women. I can’t tell if Mum means it. I suppose if I said something similar she’d probably agree with me.

  Dad offers no response, so I prod him gently. ‘Dad, Mum’s trying to tell you something.’

  Dad’s a passenger now, though, so his interest lies in the world around him. Mum pulling at threads; Dad stepping over them and looking in another direction. He finally speaks. ‘Look at that building, it’s so tall,’ pointing to a development site.

  Sometimes Fridays take a lot of warming up.

  A lot of warming up.

  But there are moments, piercing, sharp, emotional. It might be a beat of forgetfulness, redolent of times past. Other times it’s pathos, the kind you often find threaded through memories. Dad unpacking his life, his travels from his birthplace, a small town in Palestine, through Germany, before finally landing in Australia. My mother, young, hopeful, innocent, a new arrival to a country that was neither hostile nor welcoming to her.

  And then moments of reflection, acceptance. The five stages play out in no particular order. Denial. Bargaining. Depression. Anger. Acceptance.

  Diabetes runs in my father’s family but he’s been good at managing it since he was diagnosed in his mid-fifties. Still, one day in the car Dad pierces the silence. ‘I never thought this would happen to me,’ he said.

  1.

  STORIES FROM FELLOW TRAVELLERS

  One day, in traffic, I notice a bumper sticker: ‘We’re all in this together.’

  Our stories vary and diverge. In our minds, none of us shares the same strands of experience and pain. The similarities are striking, nonetheless, invoking a camaraderie in conversation. When I set out on this journey, my explorations began with people in similar situations to mine. People around midlife, often parents themselves, whose lives were evolving into a new normal – that of caring for parents, in big ways and small.

  What I found most remarkable in these conversations was how each person tackled their changing reality. Some valued the refurbished parent–child relationship, born of growing wisdom and compassion. Others expressed frustration and resentment at the revised family dynamics being forced upon them.

  ‘Meet them where they’re at’

  Patty is about to tell me how spiritual tools help her, when she stops mid-sentence. Beside me, her ailing but sweet dog, RuRu, is hovering, sniffing in my handbag, around my ankles, sending doe-eyed glances my way, though he’s half-blind. A few days earlier he fell down some stairs and ruptured a disc.

  ‘Amal, I’ve just figured out what’s going on. Can you put your pen down for one second? And mimic me, but to him,’ says Patty like a school teacher, pointing to RuRu, ‘and just go, “No more.” He thinks you have food.’

  I do as Patty asks, feeling guilty.

  ‘And hold his gaze, because he is going to be like, “Yeah, you do …”’ Ruru slowly backs away. ‘Okay, there you go. That’s what it is.’

  Patty smiles knowingly but I feel for poor RuRu. His hungry energy throws me off. ‘He reminds me of a kid,’ I tell Patty.

  ‘Yeah. Totally, because he’s regressing now. He’s got dementia.’

  That’s what it is. He reminds me of an old man, the kind who has progressed full circle, more child-like in his approach to things – completely dependent on and devoted to Patty. An old man with dementia, an affliction I’m hearing so much about lately that I feel like I’ve seen it up close.

  Patty’s already switching gears. ‘So, the only difference between the bumps that invariably happen is that I have spiritual tools, so I’m less reactive. I don’t get caught up in a vortex of stress that isn’t mine to embody.’

  Patty is in her forties, has a voice that goes from soft to commanding in a heartbeat, and the healthy, trim body of a yoga instructor. She’s a marriage celebrant, healer and counsellor, so she’s bursting with practical life advice. Nowadays, she’s a helpful daughter, too, who is pliable with her time. She considers herself lucky that she works in professions that allow her a level of autonomy and flexibility – both help when you’re the designated Dad driver.

  Like mine, Patty’s parents are ageing, and her father has health problems. Her mother has had some minor scrapes with poor health – a couple of endoscopies and colonoscopies; she’s lost a lot of weight, and is stressed by a rupture in the extended family. But her father is diabetic and ‘like most diabetics who have the good sense to self-medicate with alcohol and cigarettes’, his vision is impaired.

  ‘It’s also caused a little bit of dementia. And his vision will never be the same. If anything, it’s going to decline.’

  Patty is responsible for taking her parents to their respective doctors’ appointments, or for procedures. She also plays interpreter because their first language is Greek. ‘I don’t actually identify as being Greek,’ she clarifies. ‘My parents are Greek. I am Australian.’

  I ask Patty how she makes time for the appointments, and how it all affects her mentally.

  ‘I don’t want to sound arrogant, but it doesn’t,’ she says simply. While it’s a stress on her life, it’s also just a part of her life. ‘If I have to take my parents to a doctor’s appointment, it’s simply slotted in. I speak to them every day, or at least every second day, and I’ll see them every week, or at least every second week minimum.’

  For Patty, a philosophical approach helps. ‘There have been times this year when my professional career has really skyrocketed and been absolutely amazing. On the flip side, I’ve had to hold space for some pretty intense family
transitions that have been a little bit negative and stressful. I am a firm believer in when you hold one extreme type of energy you have the capacity to hold the equal but opposite polarity. It’s like when people say they had the best year of their life and also the worst.’

  Patty knows that her responsibilities towards her parents will increase. She is at peace with this eventuality. ‘I think it’s a natural extension of what’s already going on. If anything would happen, they would move in with me. I see that as inevitable.’

  Not everyone finds relief in spiritual pathways. But Patty is someone who makes a lot of sense when talking about life and human behaviours. If anyone can offer some nuggets of wisdom, I’m convinced it’s her. And maybe there’s something else in my request for toolkit tips; a persistent desire to feel plugged in to a sense of something more in this strange, heaving universe.

  Patty says that some ‘creative adjustment’ was needed when she had to start accommodating her parents’ needs, but ‘now it’s, for lack of a better word to describe it, normal’.

  A new normal. We spiral upwards, I have realised somewhere along the way. Much of what existed before remains, but it all looks different from this new angle.

  ‘That’s really beautiful that you can manage those things,’ I say, glancing at a forlorn-looking RuRu. We’re in Patty’s small, cosy apartment in a Sydney suburb not far from the beach. She does her healing work from home; shares vibrant sunrises and melting, vivid sunsets on Facebook, taken beside the ocean or from a cliff she’s meditating on. She is intuitive but practical, the kind of person who knows there’s a ‘woo woo’ spectrum of spirituality and won’t try to slide you too far towards one end of it if you’re not interested.