by Amal Awad
‘Our parents get sick and in the end, subconsciously, it disrupts our lives’
Karen Hitchcock, a doctor and writer, has written stirringly on the idea of the elderly being burdens to family. I never see my parents this way, and it bothers me to think they might ever consider that I would. But there’s no denying that, sudden or not, a shift in dynamics brought about by illness and age will alter people’s lives.
Dr Vasi Naganathan, a geriatrician at Concord Hospital in Sydney, spoke to me about the impact of such upended lives. ‘Certainly in the western world – this includes me as a son –part of our angst is we’ve been put out, subconsciously … our parents get sick and in the end, subconsciously, it disrupts our lives.’
But really, it’s intense guilt that plagues me. I can’t do enough. I admit this to my brother Alex one day, who seems often to inspect me for signs of fatigue or distress. He stares back at me, surprised. ‘I thought you were more intelligent than that, sis.’
I’m a bit insulted. Maybe he has a point. But what does intelligence have to do with emotion anyway? I’m swimming in unpredictable seas as I try to navigate my new normal. I’m losing myself in all of this. I don’t know who has emerged and if I like her better.
I notice how the shape of life changes. You think differently about the smallest things, perhaps because everything feels more amplified. A meal changes its form when it’s taken in the hospital cafeteria. A burst of sun after a day in a hospital ward is more than a flood of light, it’s a reminder of beauty. Memories form differently. Nothing is the same, even in ordinariness. Everything is heightened. I wonder sometimes if melancholy in a high concentration floods other people like it does me. Maybe it’s the opposite of projection, but at times I see more acceptance in other people. Like they have unlocked the secret to dealing with the shitty parts of life. I wonder if my emotional response is normal.
Then I remember how often interviews have led to tears from the interviewee, a ripping open of the façade. How circumstances of difficulty vary but are everywhere. My favourite hairdresser casually mentions that her mother recently had an experience with bowel cancer.
‘Was it hard?’
Sally shrugs. ‘Yeah, but you have to stay positive. You can’t let it take over. It only makes things worse for the person it’s happening to.’
I am reminded of how common illness, in the context of ageing, is among families. How frequently I am talking to someone about my book, only to be told that they, too, are in a similar position with a parent. Recently, in a writers’ room for a TV drama, I befriended playwright Suzie Miller. She is a rare human, immensely generous and open, quick to encourage and demystify the road of the creative. Her three days in the room are crowded with family troubles –two sick parents, a father who is particularly unwell. I feel deeply for her. I admire her resilience. I realise how thick-skinned and leathery we become when dealing with this sort of thing.
Practical. Grounded. But with a soul untethered in a sea of lonely fear. This melancholy, it floods us all. That’s why we shut it down. We have to survive.
‘Without me, she dies’
John, fifty-one, blames a great deal on Irish-Catholic guilt. He’d like to say that years of caring for his ill mother are born of love, but in truth, he says, it’s more Irish family obligation, a robust energy force that runs through his life. ‘I swear it’s bred into us,’ he tells me.
John has been a caretaker for his mother, Linda*, since 2009, his sturdy life plans upended when she developed abdominal problems and had her gall bladder removed in what should have been a straightforward surgery.
‘The surgeon made a few mistakes, ending up with my mother losing most of her bowel and lower intestine to post-operative infection,’ John says. ‘SBS, that’s the acronym for her new condition. Short Bowel Syndrome. It means five times a week someone has to hook her up to a TPN [total parenteral nutrition] bag. Think of it like three meals a day, liquid, in a bag that is jacked into your body through a PICC [peripherally inserted central catheter] line or Hickman port.’
John’s sister paid him a visit to discuss their options. They either had to put their mother in an assisted living facility or someone had to move in with her. Given the amount of damage – she was left with an 8-inch gaping hole in her lower abdomen where faeces and waste poured out at a regular rate – her prognosis wasn’t strong. They were told she likely had twelve to eighteen months to live.
‘My sister was immediately ruled out as she was married with three young boys. Four if you count her husband,’ John tells me. John stepped up. He sold his beach property (‘My german shepherd has still not forgiven me’) and moved in to be his mother’s carer.
However, John’s commitment is greater than most sacrifices of this kind. His relationship with his mother was almost non-existent when he took on the role. A little back story is necessary. John’s mother was seventeen when she married his father. It was 1966, and his mother’s young age wasn’t an impediment to their union. John’s mother dropped out of high school – at that time, it was against school policy to have pregnant students – and became a secretary for a large defence contractor. John’s father worked there in middle management.
‘The early years seemed great to me,’ John recalls. ‘We may have been poor, but my parents and grandparents never let me know. We’re a one hundred per cent Irish family. Pure bloods and, it goes without saying, Catholic, too.’
He has a sense of humour about this. ‘If my sister or I are the culmination of a thousand years of Irish inbreeding, then the Irish have some serious genetic shortcomings,’ he jokes.
John’s sister, Meredith, was born six years later. ‘I asked for a puppy. I got a whining, crying sister.’
John says Meredith was clearly his mother’s favourite; John was his father’s partner in crime. They went hunting and fishing together while his mother and sister went shopping.
Following the divorce of his parents, John and Meredith split up along with them – he went with his father, Meredith with their mother. ‘To say that my mother and I were not close would be an understatement. With only seventeen years between us, we developed more of a friend relationship than a normal parent–child association. We liked the same music, movies, cars. She was like an older sister.’
Their relationship grew more distant when John joined the army for a stretch. Linda later remarried – to a hunting buddy of John and his father – and the gap between her and her son widened.
‘Fast forward twenty-plus years, [my mother’s] husband committed suicide by gun while battling cancer. I tried to be supportive. It’s hard to console someone who, through time, became almost a stranger.’
Life continued. John says his mother had Meredith in her life, who was by now married with children, and her work. ‘She had gone back to school and was the assistant dean of a community college.’
Four years later, John’s father died of a heart attack. John grieved and went through a period of healing, then re-emerged to a generous inheritance of two large houses and a large beach-front property with several cottages. John’s work meant he was on the road a lot, so he decided the cottages were the ideal home for him. He gave Meredith one of the houses (their childhood home) and left the other empty for future renovation.
John devised a ‘grand plan’. ‘I would renovate the empty house, put my mother and her mother in it (my grandmother was edging up on eighty-five) and my mother would have a place to live, free, and she would look after my grandmother.’
The renovations came along nicely, and after a year his mother and grandmother moved in together. Then his mum became ill and the damaging surgery followed. At this point, John made the sacrifices – selling the property and moving in with his mother.
‘No amount of warning could have prepared me for what was to follow. Cleaning up her body, bed, bathroom, and anything else she touched if she had a leak. Administering IV and injection medication daily. Treating infections, trying to find food that she
could eat and actually absorb [because] the SBS doesn’t allow enough digestion time for normal foods to break down. Often, I would give her pill medication orally, only to find the pill completely intact in her “output” two hours later.’
And that twelve-to-eighteen month diagnosis? ‘Well, I moved in in January 2009. It’s now August 2017. Somebody is terrible at estimates.’
John doesn’t feel that he and his mother have grown closer. ‘She still sees my father every time she looks at me. But we do have an understanding. Without me, she dies.’
His life has changed dramatically. Before becoming a carer to his mother, he had a successful career as a project manager. He travelled throughout the US. All of this has been scaled back. He now owns a small high-end wood-working business. ‘I still travel to Eastern Europe and such, but instead of three- and four-month trips, now I am limited to two to four weeks, and it takes months of preparation to make sure a family member can care for my mother while I’m gone.’
John says that some day soon his mother will receive her multi-million-dollar settlement from the surgical group. ‘Financially she’ll be well off. But to be honest, physically she’s ruined.’
He takes another poke at his Irish ancestry and their tendency towards guilt. ‘And to add insult to injury, my dog now loves her more than he loves me. Damn traitor.’
Friday
A screenwriting project requires some family history research. However, it’s not stories I’m after but the imagery of the past. Mum delivers a large plastic box full of memories. They need sorting, decades of life.
Mum looks beautiful in these old photos. What a mystery she was; a feeling that only deepens as I stare at the black and white images that document shreds of her life. And Dad, handsome, fresh-faced, smiling, well turned out in a nice suit, surrounded by friends. There he is behind a counter at the Royal Easter Show, ridiculously young and trim. My mother in a skirt I couldn’t get away with, her hair long and dark. My parents on the pedestrian walkway of the Harbour Bridge. Then, a graduation of experiences … the pictures become more colourful with more children.
The photos are ageing the way you would expect of decades-old cardboard. Crinkled, dank-smelling, torn around the edges, creased throughout, patches of fading colour. It occurs to me that old photographs are nostalgic and haunting. They tease you from a distance, a memory drenched in golden perspective. Those were the good old days …
‘I never thought this would happen to me.’
I’m astounded at how little I know about my mother. I know her quirks. What fires up her temper (a lot of things); her strengths, her weaknesses, her predilection for being suspicious. She has a wicked sense of humour. But I don’t know her. She has kept many parts of herself hidden. Or maybe I just never bothered to look more deeply, or ask the right questions?
Dad often reflects favourably on his experiences, but there is always a disclaimer: building his life and providing for his family was very hard. They are the words he always uses. ‘Very hard.’ No embellishment, just impenetrable fact. But he will come back a moment later to balance it out. ‘I enjoyed every moment of it.’ And what he enjoyed was a variety of job titles – landscaper, phone technician, video rental store owner. Dad took up many occupations over the years, landing on travel agent before he retired several years ago.
When my parents speak about the past their memories, based on experiences, are vastly different. Dad’s memory bank is populated with people, experiences, opportunities, hard work and travel. Mum has some of those things, but she also lived a more isolated life, focused on raising her children. I don’t know if she felt then how hard it was, how lonely and soul-crushing. I don’t know if it’s all just catching up to her now. She didn’t show us this pain when we were children.
I think Mum wants acknowledgement that she too has battled – there is no denying that she has. And one day Dad makes a point of how hard my mother worked. ‘Five kids. People struggle with one.’ But there are other shades of colour to her experiences. Australia was more isolated four decades ago. Phone calls were an expensive indulgence. Nowadays, social media, apps allowing free calls, and cheap international calling cards are abundant.
Most Fridays I take my parents out, I try to do a weather reading on Dad’s mood. But I also wonder what stories my mother will tell. At one stage it felt like she was finally addressing her grievances as a migrant woman, emptying out a stream of complaints about her sacrifices. But I’ve wondered often what she longed for, not what ailed her.
One Friday, Mum obliges. There are no lamentations, just heartwarming remembrances. She recalls how she used to sing out loud when she had to walk somewhere in the dark as a child. She would belt out Arabic love songs to combat her fear of walking alone, even though she knew she was safe. There is something heartbreaking but compelling about this moment of nostalgia. A glimpse of my mother as a child, innocent and untouched by the harshness of life. She proudly tells me that she took care of grocery shopping aged ten when her father moved to Kuwait for work. ‘I didn’t just buy anything. I knew where to go for the best meat, the fairest prices. When the women sold yoghurt in clay pots, I looked for the ones with a yellow crust, because it meant that it was creamy.’
2.
I’LL GET BY WITH A LITTLE HELP FROM … THE PROFESSIONALS
It’s not a language divide that troubles us, it’s a dissonance between what is and what can be.
Dr A’s patience seems to be running thin. At one point he starts muttering in his mother tongue. I’m not Greek, but I get the gist of what he’s saying.
‘You’re lucky I like you,’ he tells Dad. About three times.
I believe him. Perhaps he’s not gentle per se, or nurturing, but I sense genuine concern and frustration. It’s the frustration born of helplessness – knowing you can help someone, but not being convinced they want to help themselves. But, because I go to each quarterly appointment with my parents, I detect a shift – gradual but noticeable. We all know each other now.
Occasionally I will act as an interpreter of sorts. It’s not a language divide that troubles us, it’s a dissonance between what is and what can be. Dr A wants Dad to use a Webster pack; Dad doesn’t like them. He has his way of doing things. Then, on one blessed visit, Dr A is congenial, seemingly pleased with Dad, whose mood has substantially improved, though he is still quiet.
‘He seems better today,’ he remarks to me as we leave. I simply smile, unsure if Dad is better or we’re just getting used to the difference.
‘Depression and independence go hand in hand’
My interviews are a window on to a world of drama. Ageing and illness, family troubles simmering away. Emotions ready to spill over, everyone feeling the strain. But there are perspectives I’m finding useful, which are not often heard. Professionals who help usher people through their elderly years form an expansive universe of specialties and concerns. And while I meet with doctors, geriatricians, pharmacists, and even a psychiatrist, I find that some of the most practical information comes from carers themselves.
Martin Warner is director of Home Instead Senior Care in Australia, an organisation with thirty-five franchisees in Australia. It’s a US business, founded in 1994 by a couple called Paul and Lori Hogan. Martin says the business is expanding in twelve different countries, with 1100 franchises around the world.
These facts are important. The significance of offerings such as Home Instead’s lies in its very name: people who are ageing and ill generally wish to maintain, to the best of their ability, the life they enjoy.
‘Instead of being elsewhere, that is to say a residential care home, nursing home or whatever,’ Martin says, ‘the traditional thinking has always been [that] when people get older, they go into a home. They go to a retirement home or old people’s home.’
We’re speaking in advance of National Carers’ Week, an initiative designed to highlight the contributions and sacrifices of carers. Such campaigns are increasingly common. Multicultural
Health Week’s annual event in 2017 centred on the theme ‘Caring for Carers’. The campaign aimed to direct carers to culturally and linguistically appropriate support services. Meanwhile, Deakin University researchers, in association with service provider Australian Unity, developed the StressLess app, to help non-professional carers manage their stress.
Carers are gaining attention because there are so many of them. In today’s fast-paced, sandwich-generation world, needing extra help for ageing parents who live alone is not uncommon. And Home Instead is like many providers that offer in-home, non-medical services to the elderly – assistance with personal care, light domestic duties, meal preparation, medication reminders. ‘We take people to appointments, we take them shopping, we take them to social outings … Our role is very much about enhancing their lives and allowing them to have that independence in their own life by being with them to stay at home whenever they want that.’
Martin points to a prevailing mindset in Australia: the dominance of the government system. ‘First of all, the heritage of this is institutional care, which is then broadened out into community care.’ The community care model the government ran previously saw providers funded to deliver services for a client. There was very little choice, Martin says. ‘The clients had pretty much no control over the services they were receiving.’
The whole model, in terms of care, has been skewed towards tasks and providers delivering services according to their own schedules. ‘That’s a very different mindset, in terms of being able to allow people to live a genuinely independent life on their own terms, which is what we’ve done. We’ve given that complete choice.’
And Martin makes an important point: the government’s move into a new online portal and system with My Aged Care is an exercise in protecting those who are in need of services; it’s an attempt on the government’s part to see how well the money’s spent. ‘[But] they can’t measure things such as relationships, companionship, social isolation,’ he says. My Aged Care is certainly not a portal that addresses such issues. It provides information about aged care services and, importantly, how to apply for and receive them. Like the National Disability Insurance Scheme (NDIS), it has been designed to empower the recipient of services, enabling them to select their providers, and indeed which services they require at all.
