Fridays with my Folks

by Amal Awad

  For many, it’s only in recent years that a clear differentiation has been made between the varying needs of ageing people. Aged care is a vastly different prospect to retirement living, and the two should not be conflated. Within aged care, there are tiers – the patients who require high-level care, who may be suffering from dementia; know themselves only through the photos of their younger self. Then there are your lower-care nursing homes: they’re not appealing options, even less so when you consider that often their residents may deteriorate further because they don’t require full-time care but are constantly bored and unstimulated.

  Chiou See is focused on creating a pre-emptive solution to a nursing home, and an older person’s declining lifestyle within one, rather than bandaging over a problem: her retirement living is centred on community, social life, activity and hope. A prevention rather than a cure for the isolation and physical deterioration old age threatens.

  ‘I have not had one case of dementia in my village,’ she tells me, explaining that this is why she emphasises the need for social interactions, for ‘playing’ in the village.

  This isn’t to say no resident has ever had dementia. Chiou See is pointing out that no one has developed it under her care. ‘When you live in a community, you actually have to do things. It’s about being needed, not needing.’

  Because one partner in a couple is usually a carer, Chiou See watches out for carer-fatigue syndrome. ‘I never worry about the one with dementia; I worry about the one who’s caring for the one who has dementia.’

  Chiou See will ask that carer questions like: how are you? Are you looking after yourself? Are you eating? Are your children rotating in and out with you? Are you getting out? Are you getting your hair done? And she’ll offer to sit with one partner while the other is getting her hair done. You need to get out or you’ll get sick.

  ‘People age differently. So there’ll always be one more dominant or a healthier partner who ends up carrying the burden. It’s unfortunate.’

  In one unique case, the couple is co-caring. Recent arrivals Adrian, sixty-three, and Cynthia, a year younger, both have schizophrenia. They have been married for nearly three decades, and monitor each other’s symptoms. Adrian is a poet – he hands me self-published books. He likes to keep to himself. Cynthia is enjoying some peace, finally, after years of struggle, keen to socialise with Elements residents, fretting about not burning the roast when her son comes over on the weekend with his new girlfriend.

  They offer only kind words about each other; they have weathered many storms together, including suicidal periods suffered by Cynthia. In fact, it’s how they met – after an attempt, she reached out to Adrian and another, who led a community group for people with schizophrenia. Adrian sat with Cynthia. ‘I thought she was a very worthwhile person.’

  Adrian reads aloud a poem he wrote about Cynthia, a whimsical take on the joy of ordinary life – Cynthia cooking, smiling. ‘She’s so brave,’ he says. ‘Her smile is just so brave. Even when things are bad and terrible, she’s brave.’ Cynthia’s response is shyness. ‘Well, you’re my hero, too, darl. You are indeed.’

  Chiou See is motivated to help people steer their lives towards a fulfilling end of life. ‘I would consider that my people should not have to go into nursing homes. I would consider that I can create that care environment and bring enough care into my village not to let them go into a nursing home.’

  I ask her how she can achieve this: sometimes bodies just fail us. No number of pools, community centres and Japanese Zen gardens (the village has all three) will necessarily change that.

  ‘I don’t believe in a nursing home concept. I already have partnerships with nurses who come in to provide care to my residents. So my job will be to facilitate, bringing care into their home and not putting them in a nursing home. And that means I will have to be more hands-on in watching and coordinating,’ she says.

  ‘And I say to all of my residents, “My wish is that you die with me. That is my ultimate wish. I do not wish for you to leave me to die somewhere else. You should die in this village.”’

  For years Chiou See has encouraged me to visit her burgeoning community, which is nestled in the Queensland bush of Springwood. It’s a short drive from Brisbane Airport, where Chiou See picks me up and immediately launches into her plans for the day. Not surprisingly, she’s taken my brief – to gather a variety of perspectives and experiences of ageing (and please, I need more men!) – and delivered.

  In her village, Chiou See zips around in a buggy, greeting anyone she passes, including construction workers who continue diligently in the rain building a new home. As a witness to these casual interactions, it’s evident just how embedded Chiou See is here. And it becomes abundantly clear within a day how much her ownership and management of Elements factor into people’s decisions to retire here. Some people, I discover, were on her radar for years. She has brought in residents with whom she’s established a rapport – widows, couples with one reluctant but the other not. She wonders at how she ever managed to get her first few buyers when Elements was nothing more than an off-the-plan project that would take a few years to build (literally) and then a few more years to grow (people-wise). She has achieved financial success; now she is people-focused. The goals have changed from financial imperatives to altruistic purposes.

  ‘It’s almost like the Maslow hierarchy of needs, where you’ve got the food, shelter sorted, and now you’re looking for a more altruistic reason. So I can go and volunteer in some not-for-profit, or I can turn back inwards and look after my own people, people who have actually trusted me enough to buy into my product even though they knew I didn’t belong to one of those big listed companies; that any day I could have gone bankrupt and what they bought into could have been drastically changed. But they came along for the ride and I’m so close to all of them.’

  Chiou See knows everyone’s medical problems. ‘Do you know that when they press their medical emergency at night, I get the phone call? I get a phone call before their children get a phone call. And they know that I’m watching, and I’m forever watching.’

  Hearing this confirms my belief that it’s her authenticity that draws people to Chiou See. ‘I do not patronise residents. I’ll say, “Get off your arse – if you want something done, get off your arse and move those blinking chairs,”’ she tells me. ‘And I see that as a form of enablement. I can say, “Poor [such-and-such]. Stay there, I’ll get the chairs for you.” I go “No, there’s nothing wrong with you. You might take a bit longer. Can you get off your arse and start putting the chairs away?” And they all do it. I say, “If you have the energy to have a party, you can vacuum the floor.”’

  More than keeping the residents active, it’s about engaging them on equal terms. And this is what she tells them: there’s nothing wrong with you. ‘You have all day to do it. But you have to be responsible.’

  She takes a similar approach to the loss of a loved one. She doesn’t indulge in pity. She never cries with residents. She encourages them to see where new life and opportunity lie.

  Chiou See talks about death a lot – how she deals with it, and how she’s trying to combat a tendency to believe that a person’s departure from this earthly realm must be a ‘bad’ one.

  It’s isolation, helplessness and illness that degrades life, and at Elements there’s a focus on living a ‘normal’ life. The point isn’t that you’re old; it’s that you can still function as you would, with more support and activities aimed at the things you’re capable of with an ageing body.

  Gawande’s Being Mortal is like her bible; his insightful exploration of what it means to prolong life when suffering may be involved. He asks at what cost, and why, if the purpose isn’t to prolong a good quality of life. It’s a tricky area, full of shades of grey. Dying with dignity, euthanasia, palliative care – who decides how a person leaves this earth, and how do we make sure it’s the person on their way out who has control of it?

  ‘Being Mortal t
aught me how to look at dying from the dying person’s perspective,’ Chiou See says. She notes how all of the deaths in the book were horrible, ‘which was nobody’s fault. It’s just so strange that he was surrounded by people who did not die well.’

  Gawande documents his own father’s decline due to unexpected illness. A heartbreaking, personal reckoning that has shaped his perspectives. ‘And his father also suffered the same kind of old people’s disease that is inflicted on people who are less educated,’ Chiou See muses.

  ‘But doesn’t that just show that nobody’s superhuman? That even though he was a doctor, there was nothing he could do about it?’ I suggest.

  Here, Chiou See wrestles with an inconsistency: why bother looking after yourself, exercising well, getting educated and fit in the hopes of ageing well if the fates are going to get you? I realise that this all ties in with her mission statement – to provide a safe, joyful space for people to grow old in, together, and surrounded by a solid, functioning community. In her ideal world people age gracefully and well. They do not become afflicted with dementia. They don’t die of crippling illness.

  ‘I thought that was a bit depressing [in the book]. Here I am telling people to exercise, to eat well, to live well, and … then it all comes to nought because if cancer can strike you so randomly and all those things, what incentive do we have when we cannot even prevent cancer?’ She searched for answers in the genealogy of Gawande’s patients – they all had cancer, or they were from his wife’s side. ‘They all got premature diseases. Not just general wear and tear.’

  But she feels strongly that death is not designed to torment you. Very casually, and more than once, she riffs on the idea that she could die at any moment and it wouldn’t bother her. ‘I’m quite happy to die today. Because I don’t think of life as a joy. I enjoy my life but I don’t think life is a joy, I think life is a task and you’ve got to get work done. So if I have to wake up the next day, that means I’ve got to do more work. If I die tonight, that’s good – it means I don’t have to work tomorrow.’

  She believes that how a person goes through the process of dying influences how others deal with their death. She offers up recent cases – four men, village residents, who have passed away – and her observations about the people these men left behind – more specifically, their wives. Chiou See says those who are left behind don’t generally require special care or support. She indicates that what follows is a liberation of sorts: sadness at loss, yes, but perhaps also a sense of relief at the end of suffering.

  I think of some Red Hat Society women I once observed: white-haired dames in bright red hats, congregating over lunch in Brisbane, catching up on laughter and fun. Like it had all been bottled up and could finally burst free. We do that, don’t we? Wait for some magically ‘right’ time for life to begin, to feel free, to be happy.

  Chiou See doesn’t try to offer the ones left behind a lot of sympathy. ‘I’m trying to teach them that this is good. It’s good for the person going, and it’s good for you. Because now you can look after yourself. Don’t be silly. You’ve already spent so much time with him or her …’

  Of course, people do get lonely. Chiou See says the stages of loneliness aren’t avoidable. ‘But the more important thing is when they’re ready to play, and when they want to play, it’s all here for you to play with. I’ve never cried with them, I’ve never felt sad with them. I just think it’s a great opportunity for the ones left behind to get on with their lives.’

  Chiou See takes me to the community centre, a spacious room with a library and kitchen in which a fridge is stocked with bottles of alcohol (operating on an honour system). The centre brims with social activities – everything from exercise classes to arts and crafts. She proudly points out the impressive works of her residents. Nearby is a hair salon (priced reasonably for the retirees), and a pool with a ramp. Up the road is a workshop, mainly used and taken care of by the men (though it’s open to all).

  The day I visit, the village is set up for Christmas, with tinsel and animals fashioned out of ropes of light, lights decorating every home ready for a Christmas event the next day. It’s missing the snow, but it looks like Santa’s village. However, it’s the Japanese Zen garden that I find most impressive. It’s not imitation Zen – Chiou See paid gardeners and designers from Japan to construct a genuine Zen space, complete with a Kamigake (God’s Gate) to ward off evil and maintain purity and warmth; a tall weeping willow near the entrance; a pond and waterfalls; and a tea house (though residents tend to drink wine there, not tea, Chiou See grumbles).

  Placards explain the meanings behind every plant, tree and waterfall. ‘Streams’, one reads. ‘The streams of both waterfalls are purposefully different. The first male stream is winding and represents exploration and caution …’

  It’s not just couples Chiou See accommodates. Sometimes friends move in together – widows, for example. She recently had one such pair purchase an apartment. Chiou See worked tirelessly with her lawyers to create a fair contract that would protect the younger, healthier one, who was ‘assuming a huge responsibility’.

  In fact, it’s her prediction for retirement living: widows moving in together, a new life.

  ‘I like silence, to tell you the truth’

  It’s only been ten days, and Charles, who’s seventy-five, is struggling a little with the move to his new place at Elements, about half an hour from his previous home of eight years.

  ‘Still hard to get my head around it,’ he says, with the hint of a chuckle. He admires his view – towering trees, bush as far as the eye can see; but it’s not the scene he once enjoyed, a panoramic view of the bay. It’s little things like this he is trying to adapt to and appreciate. It’s nice in the bush, but it’s different.

  He mentions more than once the challenge of downsizing, because it’s not simply a smaller space to inhabit – despite Chiou See’s aim to provide large apartments – it’s still, in a way, a smaller life for some people.

  His wife, Cath, has Parkinson’s disease, and two years ago suffered a stroke during a surgery. The move, Charles says, was only decided on six weeks earlier.

  ‘Things were getting a bit hard and I thought Cath might get a little bit more attached to other people and things to do …’

  ‘Have community?’

  ‘Have community, yeah.’

  Charles speaks thoughtfully, often pausing, but by his own admission he’s not much of a talker. He seems almost pained at times, but I’m not sure if it’s the downsizing or that he’s being asked to speak to this stranger with a recorder and a notepad.

  ‘It’s a big life change for me from two years ago …’ Part of the struggle seems to lie in the suddenness of it all. The loss of his familiar life – the shock of the new. ‘I had no time to think about it … This happened quick.’

  Retired and a father of two, Charles, a Vietnam veteran, was a truck driver for close to thirty-five years. He loves driving. Even now, he’ll take long drives, enjoying the empty stretches of road ahead.

  ‘I like silence, to tell you the truth. I’ll live in my own little space, watch the countryside go by … It was a hard life but we did all right. I can’t complain.’

  Charles’s day begins with caring for Cath – helping her shower and dress. ‘Because she’s very confused. Some days she doesn’t even know which clothes to put on, where to find her undies or things like that. She just can’t comprehend what’s going on. And the next day, good as gold,’ he says, with a laugh.

  Cath’s deteriorated condition is the result of deep brain stimulation to treat her Parkinson’s, which led to a bleed and the stroke two years ago, Charles explains. It was a difficult experience that hasn’t got easier. Charles’s life was, in reality, downsized from that time. Hobbies, like golf, are no longer viable pursuits. He doesn’t feel comfortable leaving Cath alone for more than a couple of hours. They sold their caravan but plan to travel – a couple of cruises in the next year or two. ‘She says no, no, n
o, but if we go, she’ll like it, I’m sure,’ Charles says. ‘But at the moment I’m just mucking around here, trying to get rid of some more stuff.’ He chuckles, like he’s laughing uncomfortably at the ludicrousness of circumstance. Later, he reflects on the challenge of reducing the props of your life – it’s hard, he tells me, to get rid of things that hold value.

  ‘Being here, in a way I feel a bit … closed in. But it’s only been nearly two weeks, you’ve got to get used to it. There are lots of nice people here I’ve talked to and met. I’m sure I’ll get used to it.’

  ‘Do you think that being here will help in terms of having a bit more time for yourself?’

  ‘I hope so. We haven’t got involved here yet because we’re still organising ourselves, but there seems to be plenty to do … and we just have to … fit in and see what we like to do.’

  His own interests are simple: going off in his fishing boat; playing a round of golf (easier when he lived two minutes away from a golf course); and reading. He just likes fiddling about, if attending to home duties allows him the time to do so. But even simple hobbies are affected by the lifestyle changes his wife’s condition has introduced. In an hour life irreversibly changed. ‘I never thought this would happen to us …’

  Charles describes the stage pre-operation where his wife was dealing with Parkinson’s as ‘not too bad’. It was after the surgery that everything became more difficult. Cath still functions, Charles says, but she gets confused at times. She used to crochet. Her day would begin with the radio. Now she doesn’t listen to it at all. Crosswords puzzles, once a regular pleasure, no longer figure in her life. She struggles to find words: ‘She keeps saying, “You know what I mean, you know what I mean.” But that’s the way it is.’ Charles laughs. ‘I’ve got a lot more patient than I used to be. You can’t live the way you used to.’ And he draws support from his wife’s family and his own. ‘I don’t feel alone. If I called one of her sisters, she’d be here in half an hour.’