Love-ins, Lobsters & Racing Cars - Great living in late adulthood
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RADICAL
RADICAL
RADICAL
REDESIGN
REDESIGN
REDESIGN
Love-ins,
Lobsters &
Racing Cars
Great living in late adulthood
Opening words
“Better advances would be nice”
“I’ve outlived all my friends and enemies” “The girls come in to help for 30 minutes Technical innovations in science and medicine prolonging We want to rethink and reshape:
At 86 and 91, Dudley and Daphne are living beyond the every morning” life long ago outpaced social innovations in providing care. • Who cares - from a focus on individuals and services to
average life expectancy. Over the last century, our life Just as ‘parenting’ supports children through dependency in We package care up into efficient bits and bobs - showering, a focus on relationships and networks
expectancy has risen by 30 years - but, it’s not just years childhood, ‘caring’ supports older people with dependency in preparing meals, transport, and social contact - and try • What care is for - from a focus on dependency and
we’ve added, it’s a whole new phase of life. There’s childhood, older age. Once we turn 65, about a third of us will need care to fulfil basic needs. Indeed, in the discussion about living fulfilling basic needs to a focus on interdependency and
adolescence, adulthood, late adulthood, and now, even to get by. And by the time, we hit our 80s, 86% of us will rely longer, we’ve focused mostly on who will do and pay for the living well
later adulthood. on extra help and care, most provided by friends and family.1 care, rather than on the meaning of care. Caring has come to • How to do care - from doing things for the person being
mean the provision of what is neccessary for wealfare and cared for to maintaining and building capabilities and
“I suppose I could learn new things” “The kids can’t stand to be around sickness” maintenance. In this project we want to find ways to enable connections.
If childhood is seen as a period of learning and growth, late Giving that extra help and care isn’t easy. 2.6 million care in the deeper sense - as an expression of interest,
adulthood has typically been seen as a period of loss and Australians have a caring role - and a third of them are concern and meaning. It’s a good time to be thinking differently about the policy
decline. In late adulthood, the independence we’ve gained as severely depressed.2 Carers have worse health outcomes and practice of care. In 2011, funding and administration of
adults can give way to the kind of dependency we experienced than nearly any other group. Increasingly, we look to “I don’t know what to do when I get older” aged care services in Australia moved from state to federal
as children. And yet our return to dependency in later life is professional carers to supplement, and in some cases, take What if we took the opportunity to reshape late adulthood and government. The Productivity Commission released a weighty
rarely coupled with a renewed focus on learning and growth. over caring roles. With more families living far apart, more redefined how systems, services, families and friends give report on the the financial future of aged care services.4 The
divorced and blended families, and more older people living and get care? What if we saw late adulthood as a lifestage report talks a lot about increasing ‘consumer choice’ and
alone than ever before, demand for professional care is rising. as important and worthy of investment as childhood? What if improving the ‘quality’ of care. Our work with people in the
By 2042, aged care services are estimated to cost the state late adulthood wasn’t just about managing decline, but about cities of Salisbury and Unley, South Australia has given these
106.8 billion dollars.3 building capabilities and connections? What if we saw caring buzz words a richer definition.
Dudley as we saw parenting - an experience that’s tough, rewarding
and wholly transformative? Rather than start with statistics and numbers, this project
starts with people’s lived experiences and imagined futures.
In the pages that follow, we share people’s stories and ideas
for a new kinds of caring. Caring that moves beyond servicing
basic needs to enabling great living in late adulthood - be that
having love-ins, eating lobster, or racing cars.
Daphne
1. Productivity Commission, 2011, Caring for Older Australians, Report No. 3. Commonwealth Department of Health and Ageing, 2003, Review of
53, Final Inquiry Report, Canberra, p. 9. Pricing Arrangements in Residential Aged Care, Canberra, p. 2.
2. McGrath, D. 2011, ‘Carer support is not only about Respite.’ Presentation 4. Productivity Commission, 2011, Caring for Older Australians, Report No.
to Transforming Respite Summit, Morphettville, SA. 53, Final Inquiry Report, Canberra.
How to read this report
Introduction: That’s where you are right now. It sets the big picture: What Introduction Stories Patterns Opportunities Why Invest?
this project aims to achieve, who made it, what we stand for and how
we work. 04 14 26 36 46
Working Backwards Barbara What is great living? Opportunities for Economic opportunities
great living
Stories: We zoom in and profile a selection of ten of the 05 16 30 48
130 people in caring roles and relationships we met in Finding & meeting Suzie Great living behaviours 39 The moral imperative
Salisbury and Unley, South Australia. Shaping minds
Start 06 18 32
Conversations & Thia, Mick & Soula Moving towards great 40
wide Patterns: After the profiles, we identify observations living Rebalancing
the reoccurring themes and answer the 20 relationships
questions: How do people in caring roles 08 Dudley & Daphne
The Salisbury & Unley 41
and relationships define great living? 40 22 Activating family &
Who is experiencing great living? Leon friends
What can we learn from these 10
positive examples that could The eligibility lens 24 42
Focus in be applied more broadly? 11
Mike & Liz Starting relationships
The connections lens 43
Opportunities: We set out (Re)Starting networks
7 opportunities to enable more
44
people to experience great living. Caring services
Why Invest? Then, we look at the economic 45
Diversify help networks
opportunities and moral imperative for pursuing
Go wide the 7 opportunities.
again What’s next: The next phase of the project is to spend
time co-designing with people, practioners and policymakers. Appendix
To move from conceptual opportunities to desirable solutions.
52 54 60 68 74
Learning and working Finding people Reflections from International examples Bibliography
people we met
53 56 72 76
The Working Talking with people 61 What we read Glossary
Backwards approach More about the
58 people we met 77
Service shadowing Contributors
66
Reflections from 79
the team We love feedback!
PAGE 4 Introduction PAGE 5
Working Backwards Finding & meeting
We’re a group of designers, social scientists, community developers During the Look and Listen phase we searched for people on the streets
and business analysts who co-design new solutions to tough social challenges. of Unley and Salisbury, at supermarkets, in centres, cafes, libraries, and homes.
We’re not a think tank and this report isn’t a provocative think
piece, it’s the first step in a year long process. We work with
people to co-design, prototype, and spread new solutions to
complex social challenges. We’re The Australian Centre for
Social Innovation’s Radical Redesign Team. We define solutions
as programs, platforms, networks, or principles that change
behaviours and shift outcomes. We believe the best solutions
come from people, and draw on their time, skills, experiences,
motivations, and aspirations. That’s why we Work Backwards
from people to policy. In 7 phases.
Projects begin by naming a tough social challenge, bringing
together governmental and non-governmental partners, and
assembling an interdisciplinary project team. We call this the New opportunties
Get Ready phase.
Potential solutions
This project began with the challenge: as our population
ages, how can we improve outcomes for older people in
caring roles and relationships? The project brings together
South Australia’s Office of the Ageing, the cities of Salisbury
and Unley, and two not-for-profit service providers - Helping
Hand Aged Care and ACH Group. Our project team includes a
secondee from the city of Salisbury, two interaction designers,
a graphic designer, an educator, a business analyst and a From top left: Door knocking, Parrahills Woolworths, Crossroads Woolworths, Goodwood Road, Jack Young Centre Salisbury
community organiser.
“Do you know of anyone who helps out or cares for a family Peoples’ experiences ran the full spectrum - from depression
In the Look and Listen phase, we spend time with people In the Prototype Interactions phase, we’ll move from the member, friend, or neighbour?” We met 130 people who cared and hand-to-mouth survival to optimism and thriving. We
to understand what a good outcome is, and the behaviours tangible to the practical - testing and iterating our ideas at a - through door knocking, at pharmacies, shopping centres and developed tools to uncover hopes and fears. It was often
that contribute to those outcomes. Our goal is to identify small scale. In the Prototype Systems phase, we develop and supermarkets. the little things (the photo on the mantle, the magnet on the
opportunities for enabling more people to experience great test out the back-end systems and procedures required to run fridge, the book by the bedside) that revealed the most. That
living. Over the past 2 months, we’ve spent time with 40 the emergent solutions. And we work with policymakers to Most did not identify with the word ‘carer.’ Some wanted to dug beneath stoic facades, and unearthed worries about
people in caring roles and relationships. Husbands, wives, influence the broader policy context. share the challenges - the anxiety, dependency, and sleep death, forgotten ambitions, and dormant interests in activities
daughters, sons-in-law, grandchildren, and friends. deprivation. Others wanted to share the rewards - care as a like cupcake decorating and bushwalking.
In the Value phase, we craft the business case and tell the proud source of identity, a reinforcement of character, and a
In the pages that follow we’ll share their stories, their versions story of the solutions. In the Grow phase, we look to scale and continuation of family tradition.
of great living, and what their day-to-day life actually looks spread the solutions. Success for us are solutions that change
like. We’ll also introduce you to 7 opportunities for shifting how people and systems behave, at scale. We moved beyond street conversations to more in-depth
behaviours and enabling more people to experience great explorations with a 40 of these folks, stepping inside their
living. In the Create phase we’ll go back out to people’s This isn’t the first time we’ve Worked Backwards. In 2010, we homes, accompanying them on errands and just hanging out
kitchens and living rooms to build on the opportunity areas. worked with 100 South Australian families to co-design a new and observing. We spent time with people who were isolated
We’ll take our ideas out of the conceptual space and into the response to family stress called Family by Family. Now in and alone, in close knit couples, with friends and in larger
tangible. 2012 Family by Family is now growing to two areas. networks.
PAGE 6 Introduction PAGE 7
Conversations & observations
We developed a set of tools that helped guide and deepen our conversations and
observations. We wanted to understand people’s day-to-day lives and what
great living meant to them.
The starting point for our questions came from diving into the PROBING THE LITERATURE EXPLORING EMOTIONS IDENTIFYING STRATEGIES
literature and identifying frameworks we wanted to test and
explore. And because we start with people, we also drew on what 47% of people rely solely on their family In interviews and ethnography we Being in people’s homes and asking
we learned whilst recruiting on the streets of Salisbury and Unley. for day-to-day care5—care that is weren’t only exploring what people did, open questions about lives, not just
These insights informed our topic guides. valued at up to 40 billion dollars a year.6 we were also listening for the outlook services, enabled to us to uncover the
Research told us that family plays a and emotions behind what people did. strategies people use day-to-day to get
Over the course of a month we talked to people in a range of critical role in caring situations, so we For example, fear. to great living.
ways and settings. Structured interviews in homes and cafes. Day focused part of our interviews on the
long ethnographies at the shops, at the caravan park or in front topic of family to find out more. Fear was an undercurrent in nearly By hanging out, we learnt so much
of the TV. Sharing a cuppa, shortbread or lingering over Sunday every conversation. People’s view of the about how people adapt to live well with
lunch. The absence of family stood out to us. future was often clouded by a sense of dependency. How to have a romantic
We expected geography to be a big impending loss: loss of loved ones, loss date in a hospital cubical. How to turn
reason why families played a limited of brain power, loss of independence, meal services into a gastronomic
role in peoples’ caring networks loss of control over how one died. experience. How to volunteer from
and lives. Instead it was divorce, Ending up in a residential care facility home. How to fix trailers without being
fractured relationships, and complete was uniformly frightening. able to see. How to make sex a daily
estrangement that weakened family activity.
ties. Far from being a resource, family Fear manifested differently. For some it
was too often a deficit seen as being led to denial and resignation. “I wouldn’t It’s unpacking these strategies and the
past repair: “My children disowned me... want to even think about needing attitudes and perceptions behind them
I haven’t seen my granddaughter for 11 more care.” For others, fear became that ultimately led us to identifying great
years.” a motivator to live differently. “We’re living and what it will take to get more
just going to have to start living in the people on the track.
present. Now is as good a time as any.”
Ethnography Tips
For others, fear was mere background
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We conducted structured interviews Visual tools made conversations about During ethnographies, we used a more 1. Productivity Commission, 2011, Caring for Older Australians, Report No.
using a detailed topic guide inspired by big or abstract ideas- like great living general topic guide that focussed on 53, Final Inquiry Report, Canberra, p. 9.
research and recruitment conversations. and outlook- richer and more concrete. observation of people, behaviour and 2. McGrath, D. 2011, ‘Carer support is not only about Respite.’ Presentation
environment. to Transforming Respite Summit, Morphettville, SA.
3. Commonwealth Department of Health and Ageing, 2003, Review of
PAGE 8 Introduction PAGE 9
The Salisbury & Unley 40
Thanks to: Eleanor / Barbara / Soula, Mick and Thia / Muriel and Norm / Deirdre and Jean / Joan and Don / Dudley and Daphne
Lance and Meredith / Eddie and Pam / Eileen / Glad / Helen and Jayne / Bob and Jean / Julie / Karen and Lou
Leon / Manajeh / Eddy / Mike and Liz / Joyce / Beryl and Jon / Suzie
PAGE 10 Introduction PAGE 11
The eligibility lens The connections lens
Most ‘aged care’ services focus on individuals, determining eligibility by age, We found it more instructive to look beyond the individual to who was around the
health and care needs. individual. The type and quality of people’s connections told us more about great
living than their age, health or care needs.
THE 41 PEOPLE WE MET
The ‘Connections Map’ used in this report shows the makeup
of an individual’s connections and how strongly they contribute
Carers to great living:
Cared for
Strong Weak None
AGE Family
connections Network level
Under 65 connections
Over 65 Community
connections
Services Reationships level
GENDER
connections connections
Male
Female
CULTURALLY & LINGUISTICALLY DIVERSE
CALD
Not CALD
5 10 15 20 25 30 35 40
Barbara Mick, Soula & Thia Mike & Liz
Knowing Barbara has physical needs Knowing Mick and Soula are classified Knowing Liz needs help to dress and
THE 27 CARED FOR PEOPLE WE MET doesn’t tell us how engaged members as CALD isn’t as telling as the fact they remember faces doesn’t tell us why she
of her family are in her day-to-day life. manage care for Thia alone. is living well.
TYPE OF SUPPORT In Barbara’s map we see In their map we can see In their map we can
Managing Alone family are only present that Mick, Soula and Thia see Mike and Liz have
Manages with Care at the network level and have limited support from multiple connections that
the only relationship their extended family, the all contribute strongly to
TYPE OF CARE = Struggling she has is with services. broader community or great living.
Mostly physical Her limited connections from services.
Mostly cognitive = Getting by weakly contribute to
Mostly emotional great living.
= Great Living
LEVEL OF CARE
High Care
Community Community Community
Mid Care
Low Care
Se
Se
Se
ily
il y
il y
rv
rv
rv
Fam
Fam
Fam
ice
ice
ice
5 10 15 20 25 30
s
s
s
ula
So k
ke
c
Mi
Mi
Barbara Thia Liz
&
You can read more about how we define great living in ‘Patterns’ p. 26-35.
Leon
Stories:
PAGE 12 PAGE 13
Mike
10 people we met & Liz
Thank you to our wonderful collaborators - Leon, Mike & Liz, Suzie, Mick, Soula,
Thia, Dudley, Daphne and Barbara - who gave their time and permission for us to
share their stories with you.
Suzie
D a p hn e
Mick, Dudley &
Soula
& Thia
Barbara
PAGE 14 Stories PAGE 15
Barbara
“It’s not a life this, it’s not a life.
I thinks that’s why I shut people out.” Getting by Great Living
A BIT ABOUT HER
Barbara is a proud Scot living in Salisbury. She celebrates who visit her, even though finances are tight. She cancelled
Burns Night every year with a Tartan display in her backyard seeing anyone at Christmas, as she’s ashamed she can’t
and dreams of the rolling hills of St. Andrews. afford gifts.
She’s 75 years old and lives in a one-bedroom council flat HER DAY TO DAY
with her two pet budgies. Barbara suffers from lung cancer Barbara spends most of her days at home except for the
but smokes half a pack a day: “The more I worry, the more shopping trip for groceries with neighbour Diana or for
I smoke. I’d rather spend money on food, but I’m buying my doctor’s appointments. She sometimes walks over to Diana’s
cigarettes. If I cannae sleep during the night, I smoke.” She has for a chat or to give Diana cooked chicken bones for her dog.
diabetes, but still loves her ginger beer and short bread. Other days she leaves the flat only to water the garden or
check the mail box.
She moved to Australia 30 years ago with her husband “for a
fresh start” after he had several affairs. This didn’t work out, If she is well enough to sit up in bed, or be in her living room,
and they separated a decade ago. Since then, her husband she reads novels for a short while until her eyes need a break.
died and her kids haven’t been in contact with her. She also spends time with her budgies teaching them new
cheeky words.
On days she’s well enough to get out of bed she cooks, reads
fiction books or calls relatives in Scotland. Her nephew, a Her cleaner comes every fortnight. Barbara enjoys the
cab driver, stops by some days for a cigarette. Other than short chats they have. She thinks the cleaner could be more
the cleaner from the state provided Domiciliary Care, her thorough though: “She spends time cleaning where it’s already
neighbour Diana is her only regular contact every few days. clean, like in the bathroom, and cleans the kitchen floor with
water, not detergent.”
HOW SHE SAYS SHE’S DOING
Barbara lives from one pension day to the next. Her health Barbara gets frozen meals delivered from the City of
is deteriorating with heart, lung and stomach conditions. She Salisbury’s Jack Young Centre every second Monday. She has
says she can’t quit some of her habits - smoking and eating a chat with staff at the centre to order the meals and reheats
sweets daily with diabetes. Her health also fluctuates a lot - them in her kitchen at lunch time. Barbara goes shopping with
from being up and full of energy to bed bound within an hour. her neighbour Diana about once every fortnight. In return she
She needs pain killers, insulin and 10 different tablets each cooks chicken bones for Diana’s dog.
morning. Despite this, she likes a good laugh.
CONNECTIONS MAP
WHAT GREAT LIVING LOOKS LIKE
Barbara says she’d like to re-establish connections with her
children, who she hasn’t seen since her divorce 10 years ago, Community
but that this is hard: “My children disowned me... I haven’t seen
my grand daughter for 11 years.” She’d also like to be more
mobile and meet new people.
Se
ily
rv
Fam
ic
es
She gets pleasure from talking and sharing memories with
others over the phone, like her cousin Rosy in Scotland. She
Barbara
likes baking shortbread and other treats to share with people.
At the shops she bought small gifts for the children of people Network R.ship
PAGE 16 Stories PAGE 17
Suzie
“A lot goes on in your head when you
go through something traumatic” Getting by Great Living
A BIT ABOUT HER WHAT GOOD LIVING LOOKS LIKE
Suzie is not quite sure how old she is. She thinks she’s 52. Suzie is not really happy with how things are going in her
She is a member of the Stolen Generation and doesn’t have life; she is not doing many of the activities she enjoys. Her
contact with her biological family. Her adoptive mother lives networks are limited and are mainly service providers. She
in a nursing home. At the moment she doesn’t see a lot of her tells us that she wants to be able to do things on her own:
because of a train line upgrade. “I’ve always been independent; I want to stay as long as I
can.” Good food is important to Suzie: “My perfect meal is
In 2002, Suzie underwent brain surgery to remove a lobster. I have had kangaroo. I have had shark. Being out in
tumour, leaving her with severe disabilities. She talks the bush, I’ve had abalone.” Now her staple is tinned tuna and
about experiencing paranoia, hallucinations and periods of mayonnaise bought every two weeks at Woolies. She has
depression. Left blind in one eye and deaf in one ear, she started acupuncture treatment to help her stop smoking and
walks with a limp and tires easily. When she’s tired everything drinking.
gets hard: moving, talking, thinking.
HER DAY TO DAY
Prior to her tumour Suzie worked out bush, cooking in As well as time alone at home, Suzie works as a volunteer at
roadhouses. She went caving, played computer games and a local Indigenous art centre where she answers the phones
enjoyed photography and painting. Nowadays Suzie spends and does general office work. Suzie has met some friends
a lot of time alone watching horror movies, reading and there. Occasionally she has lunch at the City of Salisbury’s
drinking. She volunteers a few times a week at an Indigenous Jack Young Centre but usually only when her carer comes
arts centre, and has a cleaner and a care worker. along. She says: “I don’t go much - I should go more often.”
HOW SHE SAYS SHE’S DOING Suzie’s basic needs are mostly provided for through
When we asked if there were any points in her week where professional care services. A carer visits for two hours a week
she would like things to be different Suzie replied, “Yeah, all to help with shopping and organising doctors appointments.
of it.” Since her brain injury Suzie has had a found it tough to Suzie trusts her because “she knows when I start getting
keep doing the activities she loves. For example, she used to stressed - and I do get stressed.” She also has a cleaner that
spend a lot of time in the bush and doing outdoor activities; comes fortnightly.
this has been replaced by watching movies. She says not
being able to go out bushwalking “scares the hell out of [me].”
Suzie wants to keep learning and developing her skills. She
says, “The day you stop learning is the day you die.” Suzie tells CONNECTIONS MAP
us she has a history of drinking, and last weekend she drank
half a bottle of scotch on her own. While she likes time alone,
a magnet on her fridge reads, “I cannot be lonely if I like the Community
person I’m alone with”. She takes medication for depression,
but says the “depression tablets aren’t working... I’ve been on
them for 7 years and that’s a long time to be on one tablet. I
Se
ily
rv
Fam
have to be on them for the rest of my life”.
ic
es
Suzie
Network R.shipPAGE 18 Stories PAGE 19
Soula, Mick & Thia
“If I don’t do it, who will?
She’s my mother.” Getting by Great Living
A BIT ABOUT THEM
Soula and husband Mick care for Soula’s mother Thia (90), Mick would like to be in better health. Soula tells us that she
who lives with them. Thia was born in Greece, and Greek worries: “What if Mick gets sick and I have to stop and look
culture remains a pillar of the family’s day-to-day life. She after them both?” Mick would like to feel like he did when he
speaks little english. Soula and Mick have 3 kids who they was working; he says that back then he was his “own man”.
see for lunch on the weekends. Their fourth daughter lives Now he asks himself: “What would I be doing if I wasn’t
in Greece with their only grandson. They have never been to looking after the old girl?” Via a translator Thia told us good
Greece themselves. living for her means, “Being with my kids and being looked
after. And doing whatever they do.”
Mick had a workplace accident in the late 80’s, and hasn’t
been able to work since. Soula works full time at a call THEIR DAY TO DAY
centre. She sees looking after her mum as her responsibility: There is a gap between Mick, Soula and Thia’s current
“If I don’t do it, who will? She’s my mother.” Mick and Soula behaviours and their aspirations. Mick cares for Thia during
live on Soula’s wage and Mick’s disability pension. They cook work hours Monday to Friday. They mainly watch television -
for Thia, take her to medical appointments, help her take a watching the wrestling together is their favourite - and Mick
bathe and try not to ever leave her alone, “even to go to the prepares Greek food or looks after his fruit trees. Mick and
shops.” Thia often share a laugh about their small dog who likes to sit
on Thia’s lap.
HOW THEY SAY THEY’RE DOING
Mick and Soula are doing their best to make things work, When she gets home from work, Soula takes over looking
balancing the care of Thia between them. They’ve adapted after Thia. Mick then generally eats dinner and spends the
to Thia’s changing needs by bringing her to live with them evening in another room. Soula also looks after Thia on the
after her husband passed away. They don’t get any support weekends, while Mick and his son “go for a long drive or to
in looking after Thia: their children drop in for a meal, but Harvey Norman.” On Saturdays, Soula and her Mum spend
aren’t involved in Thia’s care. They tried using a Greek respite the day at Thia’s old house in inner city Adelaide. During the
service, but Thia didn’t like being left with people she didn’t week, Thia’s house isn’t used. Soula tells us that one of Thia’s
know. During the week, Mick and Thia don’t leave the house childhood friends “lives a street away but they never see each
because Thia finds it hard to get around. Mick and Soula don’t other” as it’s hard for Thia to climb stairs.
have much time for themselves, but feel “There’s nothing we
can do, we’re just going down the direction with her now.”
WHAT GOOD LIVING LOOKS LIKE CONNECTIONS MAP
When we asked Mick and Soula about what they’d like to
be doing more of, they said they’d love to have some time
alone as a couple. The last holiday they had was four years Community
ago, and they’ve given up their weekly trips to the movies
together so Thia isn’t left alone. Spending time with their
extended family is something they used to do more of, but
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it’s dropped off since they’ve been caring for Thia.
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Sou k &
la
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Mi
Thia
Network R.shipPAGE 20 Stories PAGE 21
Dudley & Daphne
“I want to get around again”
Getting by Great Living
A BIT ABOUT THEM
Dudley and Daphne have been together for over 70 years. As a couple, there are also lots of things Dudley and Daphne
They met in the final year of high school and worked together would like more of. When talking about intimacy they say,
for many years in rural South Australia, doing everything “Sex. Let’s just say we’d like it.” Both Dudley and Daphne
together, from wood cutting to mechanics. talk about wanting to meet people to share intelligent
conversation, new experiences, and to have a good laugh
Dudley and Daphne have led very active lives. Just 10 years with. They’d like to see more of their children, but tell us
ago, Dudley was famed internationally as Australia’s oldest that their kids “can’t stand sickness.” Daphne tells us “being
racing car driver, and Daphne was his one woman pit crew for respected would sure be nice. But you can’t be respected if
over 50 years at races across the country. Now Daphne finds it you can’t enjoy life.”
hard to even get around in the house because of chronic pains
in her lower abdomen and knee surgery prevents her from THEIR DAY TO DAY
walking far. Dudley had open heart surgery three years ago A care worker, provided by a not-for-profit service provider,
and feels like he’s lost all his energy. Dudley plays a big part comes in every morning to shower Daphne and help her get
in looking after Daphne, and says he’s a “bloody doctor... I test dressed. Dudley gives Daphne her medication and morphine
her blood pressure, give her shots.” shots throughout the day. She spends most of the day in the
living room, but doesn’t watch TV as “there’s not much on.”
They used to like to hit the road and travel across Australia Sometimes a care worker pops by in the afternoon to spend
together. Now Daphne doesn’t make any plans since she an hour with Daphne, but she says, “there’s nothing to talk
“doesn’t know if [she]’ll be dead tomorrow.” Some days Dudley about.” Their grandson pops in every afternoon—they pay him
tells us he wishes his wife would “die to put her out of her $100 a week to provide them with meals.
misery”. His biggest fear is dying first.
Dudley is still an avid driver (he owns three cars), yet they go
HOW THEY SAY THEY’RE DOING few places. Once a week or so, they go the community centre
Whilst Dudley and Daphne’s basic needs are being met with for a meal but Dudley complains that “there’s no intelligent
Dudley’s support and formal services, there are still lots of conversation there, no laughter.”
things they’d like more of in their lives. Their support network
is getting smaller: “We’ve outlived our friends and enemies”.
They have 3 children living close by, but they don’t see them
much. They’d like to have more fun, and not let their health
limit their enjoyment of life. It’s been hard for them to pursue
their interests—like car racing—given their current situation. CONNECTIONS MAP
WHAT GOOD LIVING LOOKS LIKE
Dudley would like to have more energy to do things. He tells Community
us: “I want to get around again.” Dudley liked being recognised
as an expert in his motor racing days ( “They called me the
Legend, Deadly Dud”), and would like a chance to share his
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skills again. Daphne would like to do and learn more: “I used
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to do cake decorating, I am still interested.” She says that when
y
dle
volunteers from the local community centre drop by, she’d like
Du
Daphne
it if they did activities together, but “they just sit and talk.”
Network R.shipPAGE 22 Stories PAGE 23
Leon
‘Great friends and company
around me, I can’t complain at all” Getting by Great Living
A BIT ABOUT HIM HIS DAY TO DAY
Leon is the kind of man you would turn to if you needed help. Leon keeps very busy. When we spent time with him, trailers
Ask him a question or where to find something and he’ll offer of different sizes were parked on the front lawn along with a
to “put [his] feelers out.” He has lived alone in a SA Housing wide variety of scrap metals, wood and even an old washing
Trust house in Salisbury North since his wife died from machine for his fixing, sourcing and making projects.
cancer in 2006. When this happened, Leon went into a deep
depression and his eyesight deteriorated rapidly. He now only He is also busy thinking up and preparing pranks for the next
sees light and dark, and is effectively blind. time he sees a particular friend. Things like a collection of
paddle pop sticks for the one friend who believes he’s up “shit
Leon is a joker, and has a broad network of people with whom creek without a paddle”, or sourcing a box of vegemite chips
he can share a laugh. He keeps in contact with people over to give the committee members at the country music club a
the phone, catches up with them at social gatherings, and very special Aussie Christmas—tongue firmly in cheek.
over mutual interests like fixing trailers in his workshop and
sourcing bits and pieces for people’s homes. Leon receives food from the City of Salisbury’s Jack Young
Centre meal service topped up by meals that friends bring
HOW HE SAYS HE’S DOING him. A cleaner from Community Support Inc. also comes by
As a friend to many, Leon fixes trailers and repairs things for once a fortnight.
people he knows. He describes his home as a “distribution
centre.” His network has grown since his wife passed Neighbours drop by each day to catch up with groceries in
away, taking part in events at the Country Music Club and tow, to share the latest stories, or just to fix together that
in the Gawler Low Vision Support Group. Leon has several barbeque. Friends come over to stay at his place or take Leon
people on speed dial who he calls daily. He is close with his to theirs for a day or the weekend.
neighbour, and goes next door every morning for “comedy
hour” and shared banter. He says “I can’t complain at all—I’ve When asked how he does all of this minus his eye sight, he
got friends I can share a laugh with.” His motto is “caring and shrugs and says: “You can do anything you want, you’re only
sharing” and says “I scratch your back, you scratch mine.” limited by your own imagination. You need to broaden your
outlook on life.”
He uses his talents of sourcing and fixing things for people
and they help him in return with meals and lifts. He has
adapted his interests and skills to his sight loss, and makes
use of both formal services and his own network of friends.
CONNECTIONS MAP
WHAT GOOD LIVING LOOKS LIKE
“I hope one day she’ll park her shoes under my bed”. Leon
tells us he’s recently met a woman, but is taking things slowly. Community
Being independent is important to Leon: “I don’t want to be
a burden to anyone.” Leon places items in his house, like his
kitchen wares and tools in exactly the same spot so he is able
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to manage his day-to-day activities himself. Sharing stories
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with friends is really important to Leon, and he is a colourful
story teller. He had a son with his first wife, who now only
Leon
occasionally comes around, but Leon doesn’t dwell so much
on people missing from his life. Network R.shipPAGE 24 Stories PAGE 25
Mike & Liz
“somebody to love, something worthwhile
to do, and something to look forward to” Getting by Great Living
A BIT ABOUT THEM
Mike and Liz met 23 years ago and have been inseparable loss of fitness due to his cancer, but he’s doing a few freelance
since. Together, they’ve enjoyed adventures like scuba diving, projects, and the cancer has helped them live in the moment.
flying planes and travel to the more personal: celebrating the That said they do plan for the future and have a plan in place
birth of grand children, renovating and gardening. with a close friend should anything happen to either of them.
Theirs is a home with systems in place - a notice board THEIR DAY TO DAY
bursting with photos to aide memory, and space for Liz’s Being close is very important to Mike and Liz and they start
wheelchair - a result of her 31 years with multiple sclerosis. each day with a two hour ‘love-in’ - for intimacy, planning the
They tackle the progressive decline in capabilities MS brings day, newspapers and drinking coffee in bed. Three times a
using some effective strategies. week, a carer, provided by Domiciliary Care, visits and helps
get Liz showered and dressed. One of these is regular carer
Tricks like pooling strengths to work together, where Liz is Mary, who goes with Liz to the Central Market to shop for
the planner, and Mike makes it happen. It’s also important to their weekly ‘cooking experience’ where they produce dishes
them to find ways to give back: getting to know neighbours, from different cultures together—Liz does all the chopping,
volunteering, and even setting up a community bank. Mary does the mixing.
HOW THEY SAY THEY’RE DOING Mornings often involve an exercise class for Liz, and Mike
Despite tough times (losing family, Mike’s cancer, Liz’s near will get on with work in the home, or goes on his regular
death), they describe themselves as “glass half full people” second-hand book hunt. Liz will take a nap every afternoon
and much of their focus is geared towards the brighter side “to give the neurons a chance to switch off”, and they also fit
of life - appreciating the time they are together, doing things in their weekly choir practice. Friends often pop round - like
that challenge them, and building new friendships. A weekly Bronny, who they met through her mowing service, and have
highlight is rehearsing with the recently formed caring choir, developed a friendship with over the years. Most weekends
where they find “bonds of affection and mutual support.” involve visits or outings to family and friends, or a creative
project—Liz has just finished painting mugs as presents for
They’ve learnt to navigate complex bureaucratic systems, the grandchildren.
and have even shaped services to better fit them. Sometimes
it’s fighting against discrimination (such as lack of choice and
disabled access) - “it’s the squeaky wheel that gets the oil.”
Other times, it’s refusing to accept services until they work as
they envision - insisting that respite be something for the two CONNECTIONS MAP
of them, rather than a break away from each other. Mike says,
“I don’t want respite away from Liz I wanna be with Liz... if we
have respite we’ll have it together.” Community
WHAT GOOD LIVING LOOKS LIKE
Liz’s wish is for a “happy old age.” She would like to see
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her grandchildren more than the every fortnight as it is
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now. Mike thinks it’s important to have “someone to love,
ke
something worthwhile, and something to look forward to”.
Mi
Liz
He occasionally misses the buzz that work gave him and his
Network R.shipPatterns:
What is great living?
Barbara, Suzie, Dudley, Daphne,
Soula, Mick, Thia and most of the
other people we met are getting by.
They have their basic needs met:
they have food, a roof over their
head, access to health care, and
professional carers who help with
shopping and cleaning. They are
getting by in spite of brain tumours,
diabetes, MS, dementia, and cancer.
Only a handful of people we met
were close to great living - people
like Leon, Mike and Liz. That left us
wondering: What’s different about
the people who are experiencing
great living? How could we help
more people lead great lives?
These are the questions we set
out to answer as we looked for
patterns across the 40 stories we
heard. First, we compiled people’s
definitions of great living. Then, we
analysed what people actually did
- in other words, how they behaved
- to move towards great living.
Finally, we identified what enabled
people to adopt those behaviours:
the mindsets, relationships, and
networks that seem to support
great living.
Here’s what we discovered.PAGE 28 Patterns PAGE 29
Q: What do people say is great living?
A: Personal development, close connections, compelling experiences, and not being
held back.
Dudley wants intelligent When we asked people to sort through our ‘living great’ cards
conversation. Daphne wants to and assemble their version of great living, we got a real range
feel respected. Suzie wants to eat of responses. Not surprising, really. People in caring roles and
lobster and kangaroo, from her relationships are about as diverse as they come.
days out in bush. Barbara wants
financial security, and to not have We wondered what great living meant as people’s roles
to worry about paying for her and relationships shifted over time. The literature on great
funeral. Liz wants to keep learning living—on wellbeing, to be more precise—talks a lot about
new things. Mike wants to be independence and control.* These aren’t static concepts—as
surrounded by driven, passionate our capabilities change, so too does our independence and
people. Mick and Soula want to control.
travel interstate. Leon wants to
build new relationships. Thia wants What does great living mean when we are no longer as
to never be alone. independent as we once were, and rely on others to get by?
What does great living mean when our relationships require
more of us than they once did?
GREAT LIVING IS TANGIBLE
We learned was that people’s versions of great living were
rooted in past experiences . They weren’t extravagant or
fantastical. Dudley values intelligent conversation because
he’s always been a witty conversationalist. Suzie sees the
great living as good food because she’s savored it before.
People weren’t downgrading their aspirations based on their
caring needs and responsibilities - but they were downgrading
their sense of possibility. For Daphne, great living was about
feeling respected. Respect wasn’t a fuzzy concept for her:
it meant people seeing you, not your ailments. Yet Daphne
saw respect as completely out of reach, something no longer
possible given her ailments.
Great living, even where it felt out of reach, was tangible. It
was made up of at least four component parts, which people
sequenced and prioritised differently. Some people saw
great living as all about personal development; other people
saw great living as a blend between close connections and
compelling experiences; still other people saw great living as
not being held back.
* Valliant (2002) and Burgener
(2005), amongst others, informed
our thinking about great living.
The ‘living great’ cards in action To see what we read head to page 72.PAGE 30 Patterns PAGE 31
Q: What behaviours underpin great living?
A: Exchanging, adapting, shaping, enjoying, initiating.
Whilst few people we met wanted GREAT LIVING BEHAVIOURS
any less for themselves because The individuals we met close to their version of great living: Barbara’s version of great living is financial security, closer
of their caring situation, many are • Exchange: Swap stories, skills, resources, and different relationships with family, and travel to Scotland. Since her
living with less. Barbara’s diabetes kinds of care.* divorce 10 years ago, Barbara hasn’t had any contact with
is worsening; she rarely gets out of • Adapt: Continually (re)shape how they live and what they her 4 kids. She sees her diabetes and poor health as a barrier
the house. Daphne has debilitating do, measuring success in terms of what they can do† to doing much. She eats lollies and shortbread in bed. She
stomach pain; Dudley spends • Shape: Explore potential futures, plan forward, shape hasn’t accepted her neighbour’s invitation to Christmas dinner.
most of his day at Daphne’s side. expectations and systems to work for them. Money is so tight she struggles to pay for subsided frozen
Eileen was recently diagnosed with • Enjoy: Infuse fun, enjoyment, and humour into most meals, but she’s not told anyone about her financial situation.
emphysema; most of her week is everything they do; Don’t see health as a prerequisite of
spent alone, reading postings and happiness. Dudley’s version of great living is about intelligent
playing games on Facebook. • Initiate: Actively seek out new people and places. conversation, competition and challenge, Daphne’s version
of great living is about being respected and doing projects
The gap between people’s Mike and Liz’s version of great living is constant learning, with Dudley. Until 8 years ago, Dudley was the world’s oldest
aspirations and their behaviours is being in stimulating environments with passionate people, speedway racer. Daphne was his pit crew. Now, Daphne’s
wide. By behaviours, we mean what and having a close relationship with each other. Liz is losing unwell more days that she’s well. She sits in her special
people do, say, think, and feel on a muscle control, and yet she’s still taking on new projects, chair and waits for the hours to pass. Dudley rides his bicycle
day-to-day basis. learning to cook new recipes and painting. Mike and Liz have every morning, plays with his dog, reads a textbook about
helped to initiate a carers choir and Liz tutors ESL students prescription drugs, and occasionally watches videos of his
People moving towards their at home, enabling them to constantly meet new and different speedway days. A recently widowed neighbour comes by
versions of great living do, say, and people. most nights for company. There’s not much new to talk about.
think some similar things. They
may have different versions of great Leon’s version of great living is about reciprocal friendships, RELATIONSHIPS INFLUENCE GREAT LIVING
living and different capabilities, but fixing trailers, and building new connections. Far from being Dudley and Daphne’s behaviours are interlinked. What one
they have adopted a common set of an obstacle, Leon’s blindness has brought new meaning to does, says, and feels affects the other. We found that for
behaviours. the notion of reciprocity. He still fixes trailers. He tells lots people giving and receiving nearly full-time care from each
of (off-colour) jokes. He laughs a lot. He’s open to meeting other, we needed to look at the distribution of behaviours
friends of friends - and takes an interest in their interests. This across the relationship. Dudley doesn’t go to the speedway
enables him to build new connections - including romantic track because he thinks Daphne is too unwell. Daphne doesn’t
relationships. ask to do projects with Dudley because she thinks she is too
unwell. Neither is getting what they want: in fact, they seem
People who are farther away from their versions of great stuck in a self-perpetuating downward cycle. We met another
living also do, say, and think similar things. They too have caring couple where the husband was “sacrificing” his great
different versions of great living, and different capabilities, but living to try and keep his wife, suffering from dementia, at
their behaviours aren’t facilitating great living. home. They too are stuck in a self-perpetuating downward
cycle, where neither is getting any closer to great living. The
THE INDIVIDUALS WE MET FARTHER AWAY demands of caring has supplanted anything else.
FROM THEIR VERSION OF GREAT LIVING
• Don’t think they have much to give. * Fine’s (2004) work gave us
• Stick with the familiar and convenient; measuring a lens to look at care relationships
success in terms of what they can no longer do. more broadly.
• Fear a negative future; wait for it to happen. † Freund’s (1998) selection,
• Make decisions according to what they see as optimisation and compensation
Top: Leon and his friends eating Alison’s lamb stew. ‘appropriate’; accept limitations of age and health. (SOC) framework influenced how we
Bottom: Liz and one of her ESL students. • Avoid asking for or accepting help. thought about adaptation.
To see what we read head to page 72.PAGE 32 Patterns PAGE 33
Q: What enables people to adopt behaviours that move them towards great living?
A: Mindsets, relationships, and networks.
What enables Mike, Liz, and Leon
to adopt behaviours that get them
closer to great living? Why haven’t
the demands of caring supplanted
everything else? The short answer
seems to be balance. They’ve got a
‘knock-down, get-back-up’ attitude.
They’ve got relationships that
aren’t just about caring. They’ve
got networks that both alleviate the
pressures on their relationships and
bring new energy and experiences
into the fold. Individual mindsets, Irene Eddy Leon
relationships, and networks are
what appear to be critical. OPEN MINDSETS MOTIVATIONAL RELATIONSHIPS VIBRANT NETWORKS
Mindset, attitude, personality, outlook, self-perception. Call it Solid, trusting, comforting, active, fun. These were some Abundant and varied. That’s how we’d describe the networks
what you will, but the people who are moving towards great of the words people who were doing well used to describe that surround the people living well. What separates networks
living are able to truly appreciate being alive - even whilst relationships that brought the best out of them. Relationships from relationships is the frequency with which people see
acknowledging the indignities and setbacks of getting older that made them want to exchange stories, skills and them - and the functions they perform. Individuals and groups
and needing care. They don’t live in denial. They live with an resources; focus on what they can still do; plan forward; do fun in a network might be connected to a particular interest (e.g.
understanding of what is happening to them and those around things; and seek out new opportunities. Good relationships sewing friends), or a particular time (e.g. friends from work),
them - but don’t see it as taking away from the essence of seemed to motivate people to get on with living, as well as or a particular need (e.g. plumbing, cooking).
them. Leon knows he is a funny and blindness won’t change help them to actually do that.
that, if anything it gives him new material. Academics refer to networks with a range of individuals and
Good relationships weren’t just a ‘means’ to an individual’s groups as ‘multiplex.’ That means there is some redundancy
In psychological words, the people doing really well seem ‘ends’, but an ‘end’ in and of themselves. Liz’s relationship built in - there are multiple people in the network that could
to have a strong sense of self. They know who they are, and with Mike isn’t just helping Liz get by and live well, but fulfill a function if needed. That also means there is task
are secure enough with their own identity that they find ways something she puts continual energy into. That’s also true distribution - and the tasks are not all about caring. Indeed, we
to keep expressing themselves even when circumstances for another couple we met, Lou and Karen. When Lou was in learned that having individuals & groups in the network who
change. A change in circumstance isn’t something to be hospital receiving treatment for leukemia, Karen planned and don’t play a physical caring role helps people maintain their
feared, avoided, or succumbed to but just a new reality they orchestrated a weekly date night- complete with table clothes, interests and practice adaptive behaviours.
have to adjust to. candles, and non-hospital food. Lou even gently chided Karen
for not remembering his dress shoes. Take, Leon, for example. He’s got a cleaner and he gets meals
delivered every week - but he also has mates with whom he
repairs trailers, neighbours with whom he shares a good joke,
and community groups he visits to get out of the house. Were
some of his mates and neighbours to no longer be around,
Leon has other people in his network who could play similar
roles. We’d predict that Leon’s network could bounce back if
there were some changes and unpredicted shocks.
* To read more about Knoke
and Kuklinski’s (1982) concept of
multiplexity head to page 72.You can also read
