Fridays with my Folks

by Amal Awad

  I don’t know how well my parents clicked. What they talked about. Mum tells me she cornered Dad one day and said, ‘Teach me English.’ I don’t think it was a romantic courtship in the modern-day sense. But I look at old photos and they’re bursting with youth and vibrancy.

  Is that perhaps what sustains us? The anticipation of the journey, no matter how difficult and challenging it might become?

  As life did become more challenging in Australia, my mother grew in resilience and resourcefulness. And over the course of many Fridays, I see how well she sustains herself through humour. Even if Dad wanted to feel sorry for himself, it would be difficult with Mum calling him on it.

  She complains to me about Dad’s flat mood. ‘He’s like a groom at an Arab wedding, just sitting there like a statue.’

  I roar with laughter at the image she’s created in my mind. The cheesy Arab wedding set-up – a bride and groom on a grand sweetheart chair, the bride beaming on her special day, the man frozen to his seat, happy, but wishing he was somewhere else.

  Another time, Dad complains about how slow people are. He is a quick thinker, fast-paced; he was never the type to sit still, though he does take a moment now and then these days. Mum tells him that they’re not slow. ‘You’re just in a hurry.’

  But I think my favourite is when my parents go into a café, only for Dad to turn on his heel. ‘They’re all old here,’ he declares.

  Mum delivers the blow of a reality check: ‘What do you think you are? A spring chicken?’

  Then, one day, this: Mum tells me she’s nicknamed Dad ‘the silent man’.

  Actually, I think humour sustains us all. Sometimes in small ways. The feelings can be large, the solution doesn’t have to be.

  One afternoon, my friend Catherine calls me for a chat. We don’t see each other often, but we’re in each other’s lives; have been for thirty-five years. It’s a special kind of friend who doesn’t expect to see you to know you are there. We joke about our respective Dad-health issues. Her father’s at the same hospital my father goes to. We quip that we should just meet there. It’s strange how you can laugh at it, when a month before it threatened to undo you.

  Another significant development comes out of Friday breaks with Mum. I find myself reading more often about Palestinian food, a cuisine inextricably linked to my childhood. Recipes like points on a timeline. Spices that sit in the kitchen cupboards. Hearty casseroles. Flavour bursts. Memories. And though I’m not a great cook, the idea of no record of my mother’s recipes shakes me a little. It’s always troubled me that I don’t hold this knowledge, but now, as I become a companion to my parents on Fridays, and now a record-keeper, I want to write down Mum’s recipes for posterity. She makes them sound so simple.

  I have finally found a use for a beautiful red notebook my best friend, Jo, gave me a couple of years ago. A bright red cover, gold-lined pages, the words ‘Paint the town red’.

  Recipes from my mother’s kitchen. Page one: Vine leaves (wara eneb). Traditionally a social dish. It requires a lot of time and effort, so it’s best made with friends and family.

  5.

  FIGHTING THE NURSING HOME FATE

  What invisible things are we fighting?

  Nothing garners such a strong reaction as the mention of a nursing home. It’s completely understandable. Nobody wants to anticipate a future that looks cold and lonely, bereft of purpose. People want to age in place, surrounded by their possessions collected over the years; where memories have been made; close to their family and friends. Nobody wants their end to be in an institution. People visibly recoil at the thought of it. And they speak of plans to safeguard themselves. One woman, standing in her kitchen, swept open her fridge door to reveal a row of medicine boxes. ‘See these?’ she told me without wavering. ‘Two doses could kill a horse. I’m not going into a nursing home.’

  More specifically, she didn’t want to go into a nursing home because of the care she saw her mother receive, other people’s mothers. ‘I’ve seen poor care. What they do, and they do it in hospitals as well. They don’t let any attachments form … It’s so cruel. They change the staff around all the time, so that you never can attach or they can never get to know you.’

  She wasn’t alone in that sentiment, often expressed by someone elderly who lived alone and didn’t have children, or considered any reliance on family an unseemly burden. ‘I wouldn’t want to do that to them’ was a familiar refrain. One daughter told me that her mother has instructed her to help her exit before the indignity of old age afflicts her. ‘My mum has told me in no uncertain terms that she does not wish to be a burden, and she would like to end her life should she become incontinent or should she not be able to look after herself; she does not wish to be here.

  ‘I understand it. It’s a value that I personally echo. I believe that my mum is a very dignified woman and I feel like she yearns to leave in a dignified way.’

  Another woman documented a family history of dementia that trickled down the maternal line. She shared similar feelings, but didn’t want to involve her children. ‘Anyone who’s in that situation, it’s in the back of your mind when you start getting older, and you forget something, or you stuff something up, whereas that’s just normal. But you start to think, gosh is this the end?’ She adds that she is doing her utmost to stave off dementia. ‘I just keep up to date on the things they’ve shown reduce the chances of developing it. So I eat lots of turmeric. I exercise frequently. I have a busy social life. I do things like puzzles.’

  But she had already planned her exit should she become afflicted by dementia in her declining years. ‘Quite frankly, I would commit suicide rather than go through that whole dementia thing. So I’ve got my technique worked out. And you just have to hope that you come to a stage where you can still do that.’

  The government’s Australian Institute of Health and Welfare (AIHW) reports Australian Bureau of Statistics (ABS) figures in its 2017 web report ‘Older Australia at a Glance’. In 2016, 3.7 million Australians (15 per cent of the population) were aged sixty-five and over; that is, more than one in seven. By 2056, it’s estimated there will be 8.7 million older Australians (22 per cent of the population).

  ‘With those demographic changes, you’re going to get more and more people aged eighty-plus,’ says aged care psychiatrist Dr Robert Llewellyn-Jones. ‘And, of course, they are the group that are most likely to end up in care, because the older you get, the greater the likelihood that you’ll get chronic conditions, particularly dementia. Dementia’s one of the primary reasons why people end up having to go into care, because they can’t look after themselves.’

  ‘It’s like they’ve died and you’ve lost them, but they haven’t’

  Pam, eighty-one, keeps busy. She frequently attends classical music concerts (matinees for the ‘grey hair’ lot), she swims every day, a pastime she once enjoyed with her husband, who now suffers dementia and resides in a nursing home.

  Pam has been married to John for more than sixty years. They have five children together, one of whom has passed on, and thirteen grandchildren. With a big family, Pam admits that she’s never lonely, and it helps having a newborn great-grandchild.

  Beside the bathroom in her apartment is a wall of personal history. Ageing photos that, not surprisingly, offer a romantic glimpse of her past. Photos of weddings and children in sepia and black and white. On another wall are the modern ones, full of colour, the beaming faces of generations, modernity enshrined.

  Pam is softly spoken, thoughtful, perhaps even a little distant. I don’t find her evasive; rather, uncertain. As her story unfolds, however, it’s clear that she’s a lover of life, of beautiful things; someone who never just dips her toes in the water – she dives.

  ‘Music keeps me alive, I have to say.’ She likes the usual classical pieces: ‘the old ones’. The Beethovens and Mozarts. ‘I do love Elgar in particular. Especially “Nimrod”.’

  As we speak on her balcony, the dulcet tones of a classi
cal piece filter through the door. ‘I go to the theatre matinees. I don’t like going out at night much anymore. But I like the afternoons. And I’ve got a group of friends I do it with, which is really, really good.’

  When her kids left school, Pam joined a friend in an antique business. ‘We used to sell at markets, and then we got into a little co-op shop, which I did for quite a few years. I bought most of my own furniture through all of that in the good old days.’

  John was a businessman who travelled a lot. ‘We did most things together, family was very important. But when he retired he did things like golf and bowls and that sort of stuff, and I’ve never been very good at any of those things.’

  They have different interests, but they did swim together. ‘He loved swimming. And I can still continue my swimming.’

  John semi-retired. He did consulting work for a few years. He and Pam travelled together. He was in his early seventies when he retired. Then, when he turned about eighty, a few years ago, there were signs of decline. Little things. Nothing dramatic.

  ‘Probably took close to three years where it just deteriorated somewhat. And in the end we were home for the last year. I had to get carers in through my doctor, who said she felt I couldn’t really cope. I couldn’t leave much,’ explains Pam. ‘So, I was very lucky. I got a couple of women who came twice a week. There was only three hours, but at least I could go out and go to the shops or go and have a coffee.’

  It was fine, Pam says. John was quite happy, and the carers were very good with him, and he liked them. It worked well. ‘But then it got to the point where he was not sleeping terribly well, which meant that I wasn’t. I was constantly, you know, one eye open during the night; and he’d get up and go to the toilet, and … I was aware that he’d fall or something.’

  They went to see a neurologist about a year after the symptoms began. A friend of John’s urged them to.

  ‘He said to me, “I think you should go and see this guy, because I think John might be losing it a bit.” He was showing signs of that in golf … or bowls. He knew the rules but he didn’t always follow them … Most of them were very nice and they often picked him up, took him, and that gave me a break, but then there were a few – old men, old women – who complained.’

  And John was getting a bit agitated about that too, Pam thinks. The tension of trying to live a normal life when the mind and body aren’t working. But the big blow came when his doctor declared him unfit for driving. He was still driving okay, says Pam. But his navigation skills had deteriorated. He didn’t always know where he was going, or whom he was driving to see. John’s doctor said she couldn’t any longer, in all good conscience, approve him driving.

  ‘So that was a bad day. It was a bad day for all of us.’

  John burst into tears. ‘I burst into tears,’ says Pam. ‘Even the doctor did, because … she said, “I hate doing it, but there comes a time.” A hard day. Then, the car sitting here. His car. If I went out I’m thinking, “Oh my god, I hope he doesn’t try to [drive it].”’

  The loss of their driver’s licence is a major marker in many people’s stories. It’s symbolic: the stripping away of independence. It’s proof that things are different; a big moment. It gives me some relief that it was a slow burn with Dad rather than a sudden striking loss. In fact, one day, he expressed his relief that he no longer takes the wheel. ‘I’m used to not driving now,’ he told me.

  He loves taking the bus – people-watching; taking his time. Journeys, that’s what Dad likes.

  Ultimately, Pam and John traded in their two cars – getting rid of John’s and changing Pam’s small one to something a bit larger, comfortable for John to get in and out of. ‘He still to this day recognises that car,’ says Pam. Mainly because John gave her number plates with her name on them on her thirtieth birthday.

  ‘If I’m taking him out and I’m picking him up, he’ll walk out and he’ll go, “Oh, the Pam car.”’

  John ‘sort of’ knows Pam. ‘He doesn’t necessarily call me by my name, but he says to other people, “Where’s Pam?”’

  She visits him just about every day. Sometimes she takes him out – down to the park for a coffee, or just for a walk to get him out for a while.

  ‘I don’t bring him home. They recommended not to do that. But occasionally on a weekend I might drive him down to Balmoral where we swim … I’ll say, “Remember we used to swim from those steps?” And he goes, “Yeah.” It’s unlikely he remembers. ‘He likes the people walking by, kids, dogs … All of that.’

  I begin to ask Pam how she deals with the loss of, well, all of him, but before I can finish, she simply acknowledges, ‘It is a loss.’

  ‘It’s like they’ve died and you’ve lost them, but they haven’t. It’s like a death but it’s not – you know what I mean?’

  Still, Pam counts her blessings. She remains in her home, where she’s comfortable and has neighbours who look out for her. ‘Depends on how long John lives for and how much it’ll all cost, but at this point in time I can stay here. That gives me a lot of security, because I’m fortunate that everything is at my fingertips. If I can’t drive I can walk to the ferry, I can get a bus.’

  Meanwhile, Pam knows John is well taken care of; it’s not glamorous, but she thinks the care is particularly good. ‘By the same token, I walk in there and I think, oh god, I wish he wasn’t here, because … he is in high care, you see. So it’s not just like being in a nursing home, where you’ve got people with varying problems. It’s always dementia, and a lot of them, a lot … Particularly women … can be very aggressive.’

  As many people have told me, dementia sufferers may get aggressive, may experience paranoia. How many stories have I heard about patients who thought the staff were stealing from them? How often did people sadly recall a parent’s brutal mood shifts, as though they were encased in a prison of the mind? Or in prison, period.

  It’s not something Pam has to worry about. ‘They’re treated very well. They’re mainly Nepalese, the nurses, and they’re just lovely girls. They all call him by his name. One of them, she’s a sweet girl, and she always calls him “Daddy”. She said to me one day, “Do you mind me saying that?” I said, “No, I don’t. You’re always so lovely to him.” And she said, “Well, I lost my grandfather when I was quite young, and to me he’s like my grandfather.”’ Pam was pleased; she felt John would like that.

  She has posted up photos on John’s wall. She’ll go a step further and show him photos on her phone. ‘It does trigger a bit. He really can’t comprehend to read anymore, or write. And verbally he’s lost a lot. He’ll come out sometimes with totally coherent stuff, and other times he’s talking about something, I’ll have no idea what he’s talking about. It must relate back to business, I think, which was obviously an important part of his life.’

  Both Pam and John were seeing an aged-care psychiatrist for a time, following a recommendation through their GP, who thought it would be worthwhile during the early stages of John’s decline.

  ‘Did you see that helping your husband?’

  ‘I did. Funnily enough he would open up – this was before he lost a lot of his verbal skills. He would say things to our psychiatrist that I was surprised he said.’

  ‘So you were always there with him?’

  ‘Always.’

  ‘Do you feel the sessions helped him to deal with what he was going through?’

  ‘I think so. He didn’t say an awful lot. He didn’t not want to go, though. I think he always felt quite comfortable. I’d say, afterwards, “Well, that was good, wasn’t it? You got a lot out today.” And he’d say, “Yeah, I did.”’

  Later, when John was communicating less, Pam did more of the talking.

  ‘What was it giving you, to do those sessions with your husband? Was it helpful to you as well?’

  ‘It was, because it helped me, if he could get something out that I wasn’t aware of. That was helpful.’

  Upsetting and sad at times, but by and l
arge helpful.

  Now Pam sees her psychologist every five months or so.

  ‘What do you feel you get out of that now that your husband is in care?’

  ‘My psychiatrist is very concerned about me. He’s worried that I have to take care of myself. He reiterates that all the time.’

  He also encourages Pam to do things, to go away every now and then, advice she took when she went on a group tour of China with good friends, younger than her. Keen travellers who promised Pam they’d look after her.

  ‘That was amazing. Culture shock.’

  It took some convincing. ‘They said, “If you decide, get a single apartment, don’t share a room, and we’ll be there the whole time. It’s only two weeks, and John would be okay for two weeks. You go and see your sister for a couple of weeks.”’

  Pam did the necessary calculations to ensure she could afford it, but also sought her psychiatrist’s advice. He told her to go, as did her children.

  ‘They did lift their game quite a lot,’ says Pam, adding that even some of her grandkids stepped up to fill the gap. A small time difference helped keep Pam’s mind at ease.

  Pam has successfully moved her own boundaries. China helped her surrender to possibilities – she’d taken a step, she was far away and there was nothing she could do for John. ‘It took away a bit of the guilt, I think. You know? I mean, I felt a bit guilty going, but once I got on the plane, I thought, well, there’s nothing I can do about it now. That was quite good in a way.’

  When Pam returned and paid John a visit, she was greeted by the nurses, who showered her with questions about her vacation. ‘And John looked on, and then I said, “Did you miss me, darling?” And he said, you know …’ Pam trails off. ‘They said they’d felt that he knew something was different, but time is immaterial.’

  It eased her mind. No accusations flung her way for leaving him.

  ‘Do you miss him?’

  ‘Oh yeah, I do. The hard thing is … I mean, I’ve still got the queen-sized bed. The first few months – that was terrible; going to bed, that he wasn’t there. I mean, I slept next to him for a hundred years.’