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Summer 2013Carers Victoria

Supporting family carers

21 years

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Message from CarolineWelcome to the summer issue of Carers in Victoria It’s hard to believe that 2013 is coming to an end, and with it comes our last edition of Carers in Victoria for the year. This year we celebrated our 21st birthday. This significant achievement has seen us grow from a small group of carers based in a church hall to a not for profit that represents and supports thousands of carers across Victoria.

This year our focus has been on raising awareness of family carers in the broader community. We have achieved this by increasing our media presence through newspaper articles, radio and on television. We have also increased the profile of family carers through the work of our two official ambassadors: humanitarian Moira Kelly AO and ‘The Project’ co-host and comedian Charlie Pickering. I am so delighted to have two kind and passionate supporters of family carers join our team, and particularly appreciate their support with our Walk to Care event, which took place on 17 November. Walk to Care was a huge success, with hundreds of family carers and supporters joining us on the banks of the Maribyrnong River for a 4km walk and family fun day out. We thank everyone who attended and hope to see you all back next year for an even bigger and better event. Our Mingle events were also a success in 2013, with 10 free events attended by more than 900 family carers across Victoria, including an event for over 300 carers in Melbourne during National Carers Week.

In an effort to raise awareness of caring families with government departments and service providers, we have been involved in a number of important advisory groups and committees. These include the Department of Health and Ageing consultation on aged care reforms, the National Disability Insurance Scheme (NDIS) working group of Mental Health Council of Australia, and a partnership with the Victorian Office of the Disability Services Commissioner to develop practice guidelines to improve family engagement by disability services providers.

I would like to take this opportunity to pay tribute to Briony Dow, who has recently retired from her position as a Carers Victoria Board Member. Whilst on the Board, Briony used her personal caring experience and knowledge from her work in the community sector to achieve great things for our organisation. We would like to thank Briony for her hard work and dedication, and wish her all the best in her future endeavours.

Thank you to our readers for all of your support this year. I hope that all carers are able to enjoy a happy, restive and joyful holiday season, and look forward to another big year with you all in 2014.

In this issueMessage from Caroline... 2

What’s happening at Carers Victoria... 3

What’s happening around Victoria... 3

Carers in Victoria: Digital magazine update... 4

Working or studying after caring... 4

10 ways to cut costs and save money... 5

The caring journey... 6-7

Policy update... 8-9

Carer story: Dreaming big... 10-11

For young carers... 12

Tech talk... 13

Interview with a carer: Jean Taborsak... 14-15

The Mingle effect... 16-17

Take a break: recipe, sudoku... 18-19

The quarterly magazine of Carers VictoriaISSN 1445-6761 2013: Issue No 4 (Summer)

Editor: Sophia Bolden

Graphic Design: Toya Ricci

Contributors: Annalisa Cannizzaro, Ben Ilsley, Bernadette Garcia, Hop Nguyen, Judith Oliver, Kate Topp, Krystal Scanlon, Terri Humphries

© Carers Association Victoria 2013

This work is copyright. Apart from any use as permitted under the Copyright Act 1968, all rights are reserved.

Requests and inquiries concerning reproduction and rights should be addressed to Publications, Carers Victoria, PO Box 2204, Footscray, Victoria, 3011

The views expressed in this work are not necessarily those of Carers Victoria. Carers Victoria has made every effort to ensure the quality and accuracy of information at the time of publishing. Carers Victoria cannot guarantee and assumes no legal liability or responsibility for the accuracy or completeness of the information. This work is not intended to be a substitute for independent professional advice. To the full extent permitted by law, Carers Victoria does not accept any liability for any claim, injury, loss, or damage suffered or incurred by use of or reliance on the information, however it arises.

Carers Victoria Level 1, 37 Albert Street (PO Box 2204) Footscray, VIC 3011

Phone: (03) 9396 9500 Carer Advisory Line: 1800 242 636 Fax: 9396 9555 TTY: 9396 9587 (textphone for the hearing impaired)

publications@carersvictoria.org.auwww.carersvictoria.org.au

Carers Victoria is funded by Victorian Departments of Health; and Human Services, Federal Departments of: Health and Ageing; Families, Housing, Community Services and Indigenous Affairs; Veterans Affairs, Trusts and Foundations and the generosity of the community.

What’s happening at Carers Victoria

Happy 21st birthday, Carers VictoriaWednesday 16 October marked a momentous event for Carers Victoria; an afternoon reception at Government House, hosted by The Honourable Chief Justice Marilyn Warren AC, Lieutenant-Governor of Victoria, to celebrate 21 years of service to the community.

Carers, volunteers, government officials, community partners, and other supporters joined Carers Victoria staff and Board members in the State Drawing Room to celebrate Carers Week and the 21st birthday of Carers Victoria. Music was provided by Rose Terzoglou on grand piano; formal speeches were followed by afternoon tea and an invitation to tour the State Apartments.

Included among the guests was Joy Ambrose, the first member of Carers Victoria and a notable figure in the establishment of Carers Victoria 21 years ago. At the other end of the scale, our youngest guest Courtney Howard wasn’t even born when Carers Victoria first opened its doors to support family carers.

As Carers Victoria comes of age and looks ahead to its next 21 years, we are indebted to Joy, Courtney and the many, many others who have supported us over the years.

Country Women’s Association partnership We are proud to announce that Carers Victoria has formed a partnership with Country Women’s Association of Victoria (CWA). Both organisations celebrated milestone birthdays this year, and between us we have over 106 years’ experience in helping to make the Victorian community more inclusive for women and family carers alike.

This collaboration will see both organisations come together to lobby Federal and State Governments for changes in policy issues relating to women in caring roles. This partnership will provide the capability to collaborate and work across the state more broadly with over 300 community branches of CWA and over 700,000 carers in the communities across Victoria.

We are delighted to be involved in the CWA Christmas Fair on Saturday 7 December, held at the beautiful Heritage listed CWA headquarters, 3 Lansell Road, Toorak. There will be festive cooking demonstrations, goodies for sale, Christmas carols, raffles and competitions. We hope to see many carers in attendance, and look forward to spreading the Christmas cheer with you.

What’s happeningaround Victoria

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Gingerbread Village by Epicure

1—24 December

Award-winning pastry chefs will create a life size gingerbread village at the Melbourne Town Hall this December. The village will include popular iconic Melbourne landmarks including old favourites Melbourne Town Hall, Melbourne Cricket Ground and Luna Park, plus two new surprise additions.

Entry into the Gingerbread Village is by gold coin donation – all proceeds go to Make-A-Wish Australia.

For more information call 9658 9779 or go to www.facebook.com/gingerbreadvillage

Cycling Australia – Road National Championships

8—19 January (dates to be confirmed)

Head to Ballarat in early January to witness world-class athletes and some of Australia's greatest cycling stars battle it out for the green and gold jersey at the 2014 Cycling Australia Road National Championships.

For more information call 9533 3160 or go to www.roadnationals.org.au

Bonjour Bright

24—26 January

Enjoy this French inspired festival in Howitt Park, Bright with open air films, live music, food and wine as an accompaniment to the Audax Alpine Classic. There will be plenty of children’s entertainment on offer throughout the weekend and a range of artists and musicians.

For more information go to www.bonjourbright.com.au

White Night Melbourne

22—23 February

Come and experience the best Melbourne has to offer as the city is transformed into an all-night wonderland for everyone to explore. From dusk until dawn discover over 80 free events celebrating music, food, film, art and light.

For more information call 9417 6690 or go to www.whitenightmelbourne.com.au

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The festive season can be an expensive time of year, particularly for people who are on strict budgets as a result of their caring role. To help ease these financial pressures, we have put together some simple ways that you can cut costs and save money.

Shopping. Have a shopping strategy for buying your groceries to help you save. To do this, plan your weekly meals, write a list and stick to it. Try to avoid doing your grocery shop while you’re hungry to lessen the risk of buying extra treats. Shopping at the end of the day can also be a great way to pick up marked down specials.

Buy fresh and explore. Buy fruit and vegetables that are in season to ensure you’re buying the freshest products without the added cost of shipping them in from other countries. Getting to know your cuts of meat can also be invaluable, so ask your local butcher about cheaper alternatives to your favourite more expensive cuts.

Brands. Shopping around can save you a bundle, so it pays to try bulk or clearance stores for items that you regularly use. Experimenting with different brands can also be worthwhile, as the supermarket brand is often just as good and twice as cheap.

Eat in or go vegetarian. Save money by cooking at home instead of having takeaway meals. There are many cookbooks dedicated to quick and cheap dishes – visit your local library and see what you can find. You can also be good to your hip pocket by having a weekly meat-free day. Meat is often the most expensive ingredient, so plan a regular vegetarian meal in with your usual favourites.

Cleaning solution. Save money on expensive cleaning products by making your own solution with two simple ingredients. Mix one cup of white vinegar with one cup of water and you can clean countertops, floors, showers and even the toilet. Warm up the solution in the microwave until barely hot for those tricky stains.

Gas and electricity. Help the environment and your finances by turning off electrical appliances at the powerpoint when not in use. If you’re too hot or cold, change your clothing rather than the thermostat. You can also help reduce heating and cooling bills by closing doors and curtains, blocking out drafts and using energy efficient light bulbs.

Swap and share. You don’t need to buy everything new, instead why not host a swap party? Simply invite friends to bring clothes they no longer want and swap away. Sharing tools and equipment with family that you only use occasionally can also be an excellent way to keep costs down.

Entertainment. There are many ways to entertain on a budget. Look for discount vouchers for restaurants on supermarket dockets or in the local paper. Your local cinema may also have cheaper tickets on certain days, so be sure to check with them before you see the next blockbuster.

Piggy bank. Try putting all your gold and silver coins in a piggy bank. Resist temptation to open it until it’s full, and you’ll be amazed how much you can accumulate in a short period of time.

Super savings. You could have superannuation that you didn’t even know about. If you have changed jobs or addresses since you started work, it’s worth doing a quick search to see if you have any missing super. To find out more, go to www.ato.gov.au/Calculators-and-tools/SuperSeeker

If you have multiple superannuation accounts, it pays to consolidate them and cut down on fees. To find out more, go to www.australia.gov.au/topics/economy-money-and-tax/superannuation

Good luck and we hope these tips will help you find some spare dollars in your budget to enjoy something special.

to cut costs and

save money

Earlier in the year we advised you about our plans to make our magazine more cost effective, environmentally friendly and more easily shared.

This December we distribute our second digital edition, providing readers with the same information and support as the hard copy version, but at a greatly reduced cost.

We wish to thank our digital only subscribers who have opted to receive only the digital magazine. The cost savings we have made will help us to provide more services for carers: more counselling, workshops and carer support services. With your help we will ensure that Carers Victoria remains a sustainable and cost efficient organisation.

If you haven’t opted to receive a digital copy but your email address is registered with us, you will receive both versions; so please make sure to check your email inbox and let us know what you think.

If you would like to switch from a hard copy version to digital, please contact our Membership team on 9396 9561 or email us your full name and the words ‘Carers in Victoria digital only’ to membership@carersvictoria.org.au

Thank you to everyone who took the time to provide us with feedback about the first digital magazine. After listening to your feedback, we have endeavored to make this edition of the digital magazine easier to zoom in on text.

Next year will see us begin a print subscription offer to help us cover printing costs, so stay tuned for more information.

Thank you again for your continued support of Carers Victoria. We hope that you enjoy reading the new digital Carers in Victoria magazine as much as we have enjoyed putting it together, and encourage you to share it amongst your friends and family.

Carers in Victoria digital magazine update

It can be incredibly difficult for many carers to continue to work while meeting the demands of the caring role. The decision to stop working not only affects the family income, but it also impacts on superannuation, lifestyle choices, future career prospects and self-esteem. However, it can be equally challenging for someone who is interested in returning to work after their caring role lessens or ends.

We are often asked about this issue on the Carer Counselling and Advisory Line. Carers are keen to hear about grants or funds that may be available to assist them to return to work, or what training programs may be available.

Centrelink now offer Job Seeker Workshops. You may be eligible for one of these workshops if you live in one of the target regions, are in the first 13 weeks of your job search, and have been assessed as ‘job ready’. Workshops cover the following topics:

• Local labour market opportunities.

• Job search techniques.

• Out of area employment opportunities.

• Skills that are in demand.

• Further appropriate training options.

• Other services such as the Australian Apprenticeships Access Program.

• Participation and reporting requirements or obligations while receiving Newstart Allowance or Youth Allowance.

The target regions in Victoria are Dandenong, Cheltenham, Fountain Gate, Greensborough, Sunshine, Epping, Ballarat, Moreland, Watergardens, Geelong, and Werribee.

There are a range of supports available through Centrelink to those who wish to pursue study once their caring role has finished. Austudy is available to those who are undertaking tertiary education, or an Australian Apprenticeship or traineeship. Abstudy is available to people from Aboriginal or Torres Strait Islander backgrounds. Depending on your family situation, you may also be eligible for a child care rebate when you undertake study or work.

It is also worthwhile discussing your situation with the educational institution you plan to study with. Many Universities and TAFE’s offer a range of scholarships and bursaries which can ease the costs associated with studying.

For more information regarding supports from Centrelink, call 132 850 or go to www.humanservices.gov.au/customer/information/centrelink

Working or studying after caring

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Becoming a family carer is an unexpected experience for most people. It’s a situation people rarely think much about before ithappens, and it can quickly create a sense of emotional mayhem. When faced with a new caring role people often experience shock, grief, numbness, fear, anxiety, sadness, anger, guilt, stress, disappointment, and concern. Carers may worry about the future, question their own ability to cope, feel overwhelmed, or experience distressing thoughts and feelings. Suddenly life can feel like it has changed forever.

Carers are an incredibly diverse group of people, caring for loved ones with a range of conditions, such as mental or chronic illness, disability, neurological disorders or frail age. No matter what the specific situation is, carers share similar emotional turmoil. Despite this, carers often hide their feelings to stay strong for the person they care for and their family.

There is often a sense of information overload as a carer. There is plenty to learn about the condition of the person you care for, treatment options, medication, and the services and supports available to assist both the person you care for and for you as the carer. There are financial implications and consequences for the family and possibly an impact on your career. Some family carers give up work completely or juggle part-time work, while some carers take on the additional roles of their spouse.

Some carers feel their caring journey is lonely, and many lack knowledge of available support services and programs. Other carers feel that they are unable to consider taking time out from their caring role to get help.

Carers repeatedly state they feel guilty taking time for themselves. Yet, by denying themselves time to meet their needs, carers risk their own health and wellbeing.

Research and anecdotal evidence highlights that social interaction, especially with other carers, is extremely beneficial. Joining a carer support group provides a safe and supportive environment for carers to share thoughts, feelings, experience and knowledge. These are especially important given the many challenges that can arise throughout the caring journey.

Through carer support groups, carers learn that other people have experienced the same thoughts and feelings that they believed were unique to them; carers learn that they are not alone. By attending regular groups carers have the chance to laugh and cry with empathetic people, enjoy group activities, as well as outings and workshops. These groups help to validate emotions, normalise situations, and teach new skills for coping.

The Education and Training team at Carers Victoria offers groups of carers free, practical and interactive workshops, programs and information sessions.

Workshops can be delivered to support groups at their regular venue and meeting time. The carer support group might be linked in with the Commonwealth Respite and Carelink Centres, or with service providers, councils, peak bodies, special schools or ethnic language support services. Occasionally workshops are offered to carers at Carers Victoria’s office in Footscray.

Carers Victoria’s workshops are valued by carers because they help them to discuss key issues, learn new skills and discover effective tips and strategies to help with common issues in a fun atmosphere.

To find a workshop that’s right for you, take a look at the session topics on offer:

About Us (Carers Victoria) is an information session - running from 10 minutes to an hour - about what Carers Victoria is, and the services and supports it provides for carers.

Introduction to Carer Support Group Facilitation is a one day training program for carers wanting to start up a support group or facilitators wanting a refresher.

Caring for yourself is a key introductory two hour workshop for carer groups who have not previously attended our education sessions. It is ideal for carers who take better care of the person they care for than themselves, or for people who neglect their own health and wellbeing. This workshop aims to help carers to challenge their guilt, to give themselves permission to take time out for themselves, and provides practical strategies to start practising self-care activities in five to ten minute blocks of time.

Surviving carer stress is another very popular workshop that explores why caring is stressful and how to prevent or reduce stress.

Sleep Matters considers the importance of sleep for health and wellbeing, which factors prevent people from getting a good night’s sleep, and how to improve sleep.

Wellbeing – write your cares away enables carers to experience the benefit, ease and fun of simple three minute writing activities. This workshop also places an emphasis on sharing, talking and laughing in coping with emotions and stress.

Relax and unwind – improve your wellbeing offers participants the opportunity to discuss and practise a range of relaxation activities.

Dealing with Professionals explores why it is often more difficult to talk to professionals than it is with friends and family on your caring journey. Practical strategies provide ways to overcome this challenge.

Yes I can…take a break is a workshop that considers a variety of forms of respite, explores the practical and emotional considerations and helps carers to challenge their barriers to using respite.

Change, loss and moving forward explores how change, wanted or unwanted, is an inevitable part of caring. This workshop also looks at the impacts of change, and how to move forward.

Effective communication – back to basics re-examines basic communication principles and practical ways to improve communication with a variety of people.

It’s OK to be assertive considers what makes communication assertive, non-assertive or aggressive and how to increase assertive communication skills.

Speak Up, Speak Out is a workshop that teaches the skills of effective self-advocacy.

There are many other workshops and programs including Navigating the mental health system for carers, Carers get angry too, Food and mood, Sing your cares away, Supporting your ageing parents, and It’s OK to say no.

If you are interested in joining a carer support group, contact the Carer Counselling and Advisory Line on 1800 242 636 for information on groups looking for new members in your area. Alternatively, many condition-specific support organisations offer carer support groups.

For more information or to book a workshop contact the Education and Training team on 9396 9500 or email education@carersvictoria.org.au

The Caring journey

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Policy updateMentaL heaLth

Carers Victoria continues to advocate for carers of a person with mental illness. To effect real and long-lasting change this means not only lobbying for improvements and supports for carers themselves, but also for better services and supports for the person they care for.

Some of the policy areas that we have focused our efforts on recently include:

Carers of a person with mental illness and Centrelink payments Carers of a person with mental illness have long felt that they face particular difficulties in accessing Carer Payment or Carer Allowance. Over the years, many examples and explanations have been made for this, and one of the most common difficulties expressed by carers is that the assessment tool used to determine eligibility is biased towards those caring for a person with a physical disability. Despite numerous complaints about this, few changes have been made to the design or rules of the payments.

Carers Victoria recently conducted a study into the access patterns and experiences of carers of a person with mental illness in relation to the payments. The study found that caring for a person with mental illness often has significant impacts on the financial life of all family members. In addition, the payments have great symbolic importance in providing recognition of the caring role.

The resulting report, Invisible Care: Access to Carer Payment and Carer Allowance by Victorian carers of a person with a mental illness, was released in August 2013. This ground breaking report contains feedback from surveys and interviews with carers and data from government departments. Invisible Care makes clear recommendations to the Federal Government, Centrelink, and mental health services with ways in which they can improve access to the payments by carers.

To date, Carers Victoria has had a terrific response to the report from carers and partner organisations across Australia. Together we will work to build a united voice urging the government to implement the report’s recommendations.

A very special thank you to all the carers who took part in the study for providing their time and thoughts, the study could not have happened without you. To view the report, go to www.carersvictoria.org.au/publications/reports

Victorian Mental Health ActThe current policy environment presents a number of important opportunities for advocacy. The first of these is the expected release of a new Victorian Mental Health Bill early in 2014 to replace the current Mental Health Act 1986. The government’s intention is that the new Act will reflect more contemporary understandings and values about mental illness. In particular, the legislation will be more consistent with recovery principles.

The draft Bill is not publically available however the Victorian Government has released a number of documents about the legislation. Of these documents, A new Mental Health Act for Victoria: Summary of proposed reforms, explains there will be a number of changes that encourage persons with mental illness to make their own decisions about their treatment and care whenever possible. To do this, people will have the opportunity to make Advance Statements about the treatment options they prefer and under what circumstances. Completing an Advance Statement can be especially important for people with mental illness who may lose their capacity to make good decisions when they are unwell. Under the new Act, people with mental illness will also be able to nominate a person to receive information and to support them in their decision making. To read A new Mental Health Act for Victoria: Summary of proposed reforms, go to www.health.vic.gov.au/mentalhealth/mhactreform/index.htm

The Department of Health is releasing regular bulletins about how preparations for the new Act are progressing. Through these we have learned that preparations are underway to set up a Mental Health Tribunal to replace the current Mental Health Review Board. In addition, a new Mental Health Complaints Commission will be established. For more information, go to www.health.vic.gov.au/mentalhealth/mhactreform/news.htm

The proposed changes regarding the Mental Health Act will have an impact on carers and other family members. The Victorian Mental Health Carers Network will continue to provide feedback on these changes. For more information, go to www.carersnetwork.org.au

Psychiatric Disability Rehabilitation and Support Services reformVictoria’s community mental health support services are currently in the process of being reformed. Carers may know these as Psychiatric Disability Rehabilitation and Support Services (PDRSS), of which there are currently over 100 in Victoria. The aim of the reforms is to improve service quality, ensuring that support is flexible and tailored to the needs of each individual. There will be a renewed expectation that services will engage

more with carers and other family members. Services across the state will also be more consistent in terms of their availability, who has access to services, and what the services will offer.

All PDRSS, except for those in the Barwon region, will be invited to apply for funding through a two stage process. Organisations or providers that currently do not receive this funding can also apply through the recommissioning process. It is expected that this will result in many changes to the sector in the coming months. For more information, go to www.health.vic.gov.au/mentalhealth/pdrss-reform/

The Victorian Mental Health Carers Network, of which Carers Victoria is an active member, will continue to take a role in informing carers about the reforms and representing their views to government.

A National Disability Insurance Scheme and mental healthFollowing the 2013 Federal election, the National Disability Insurance Scheme (NDIS) has reverted to its former name, having spent a few months known as DisabilityCare Australia.

One rationale for reforming the PDRSS sector is to help it prepare for the ongoing roll out of the NDIS. Carers Victoria, in collaboration with Carers Australia, took an active role in advocating for including people with a psychiatric disability in the scheme. To read our submission to the Productivity Commission, go to www.carersvictoria.org.au/file-assets/policy-submission/disability-care-support-response

Now that people with a psychiatric disability are included and the scheme has been launched in the Barwon region of Victoria, there is a need to ensure that the needs of people with a psychiatric disability and their carers are properly met. Roll out of the full scheme will start in 2016 with a target date to be up and running Australia wide by 2019.

These timelines give us the opportunity to monitor developments in Barwon and constructively raise concerns as they arise. We will do this by meeting with Federal and Victorian Government officials and representing carers on working groups and committees.

Carers Victoria will continue to update carers about developments as the NDIS evolves, so keep an eye on our website and Voice ebulletin updates. To subscribe to Voice, email your full name and the word ‘Subscribe’ to ebulletin@carersvictoria.org.au

If there are policy issues you would like to know more about, please send an email to policy@carersvictoria.org.au

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It was with great anticipation that we welcomed our first born child Alex. He was a boy and we had anticipated his arrival for a long time. We settled into some sort of a routine as first time parents, and in all ways Alex seemed perfect. The first two years passed by and we were preparing for the arrival of our second child when our world, our lifestyle, our security in the future, our plans….our everything came crashing down.

It seemed to us that all was not well with Alex. He had followed a normal pattern developmentally, and yet his happy, social self seemed to be changing. No longer did he take sheer delight in our day to day life. Alex no longer celebrated his successes and he lost all the verbal language he had used so freely before. His movements became uncoordinated and his balance awkward. Activities that had been so much fun for him previously were now incredibly difficult.

So began the endless round of appointments, medical tests and assessments. Over time came the realisation that Alex was going to have numerous difficulties and carry with him not one, but several labels and diagnoses. He would not be the boy he used to be.

For the purpose of this story, the labels are not important. What was clearly evident was that I was now caring for my son who was going to need my care and help with everything.

This would include assisting Alex with the simplest of tasks to the more complicated activities, like communicating with us his needs and wants. The emotional rollercoaster at this stage of Alex’s life was the biggest and scariest I had ever been on.

I began without realising it to adopt a changed role. Suddenly mixed up with times of huge emotional upset, I took on the mission of learning, growing and helping Alex with every aspect of his disability. I had a thirst to gather as much information as I could and attend every workshop run by therapists, all in an effort to understand my son and make a difference. The urge to care in this way was like an insatiable hunger, a driving force, punctuated only by huge bouts of sadness and grief.

My life was full of ‘more’: more crying, more cleaning, more driving, more washing, more appointments, more thinking, more challenges, more difficulties, more reading, more of the unexpected. There were only two things I had less of: less time and less sleep. All of these things seemed to be focused almost entirely around Alex.

Somewhere early on in this new stage of family life, my second son Lachie was born. Much to our relief, he seemed to be okay. In fact he was so okay and Alex was so needy, I have little recall of the early stages of Lachie’s development: when he walked, talked, fed himself, packed his bag and so on.

Every so often I’d pause and take stock of how our family was going, how much of a mum and wife I was. I’d be conscious of trying to restore the balance of everyone’s wellbeing, including my own, and not always successfully.

Now Alex is ten and my caring role has continued. As a family we have grown and changed and developed a new outlook. Over time we have moved on from seeing Alex and all his labels to seeing him as the person for who he is. We celebrate his achievements, no matter how big or small, especially when we know how ‘big’ any achievement is for him.

We have travelled a journey where we are constantly thinking, planning and creating. It continues to be a road less travelled, with all the changes we have implemented. We are constantly searching for daily practices which will help Alex. We now have a sense of hope and we identify the benefits of creating a quality of life for him that others would see as impossible.

Alex is undertaking dual schooling where the school and his peers’ acceptance of him has been amazing. What more could you want for your son, even if it’s only a short term option. And Alex? He’s very happy and has been provided with a real sense of community.

Now I have a new caring role, still one of making a difference but one where I want to dream big and plan for Alex’s future. I feel compelled to not let society dictate what Alex will do and where he will go as a person with significant disabilities. I’m breaking new ground, going where only a few families of children with a disability have been before.

I hope others will support me in helping Alex to grow and develop in ways which will allow him to lead a fulfilling, meaningful, and individualised life that’s right for him. I want each day to be filled with things for him to do because they have been chosen for him, with his input as much as possible. I dream of a home, not just a house, where supports and friends are caring for him as a person with his own interests and desires, just as we all have interests and desires for our own lives.

As Alex’s mum and carer, I can only hope that others will catch on to this way of thinking for the lives of people with a disability; that their lives are individualised and not operating in groups where everyone does the same activities and goes to the same places.

As Alex’s mum, together with others, I’m dreaming big and daring to be different.

Dreaming Big a carer story

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One of the biggest misconceptions about state-of-the-art technology is that it is solely reserved for the young. However, just because an item of technology is innovative, it does not automatically mean that it requires a degree in computing, or for that matter, a lot of money. Here are three technological devices worth investing in:

TabletsIf you’ve never owned a computer, you could go straight to buying a tablet. Not the medication-kind, these tablets, such as the Apple iPad, are the latest easy-to-use accessory which have been universally embraced by consumers for their ease of use and simple style.

Although Apple is seen as a luxury brand, there’s a reason their products are so well loved – they are the easiest to use. Their iPad has simple, clean and functional features that are easy to grasp at any age (as any parent of a tech-savvy toddler can attest to)! They are the most expensive brand, but you can save money by buying a refurbished older model of the iPad for approx $200. If you

want to go for a less expensive brand (bearing in mind most tablets do the same sorts of things), they can start at about $100.

E-readersAs much as you or the person you care for may love your paperback books, there’s something to be said for an E-reader. Ebooks (books that are available in digital format from the internet) can cost less than a dollar each, and an E-reader, such as a Kindle, can store thousands of books. Font size can be increased too. A Kindle can cost from as little as $80, or $200 for a Kindle Fire, which allows you to surf on the internet as well.

Mobile phoneMost mobile operators, including Telstra and Optus, sell easy-to-use mobile telephones with large buttons and basic functions, such as text messaging. For example, Optus sells the Doro Easy 615 phone, which is marketed as being easy enough for anyone to use. It has an easy-to-use keypad, camera and basic text message and calling features, with extra loud sound and large text and costs $129. (July 2013)

Reproduced from Carers Queensland, FIRST magazine – Spring 2013

teCh taLKfor young carers

Hi, I’m Michael! I’m a 20-year-old technology enthusiast from metropolitan Melbourne and I’m in my final semester studying a Bachelor of Information Technology at Swinburne University. I’ve been a young carer for my brother David for as long as I can remember, ever since he was diagnosed with Cerebral Palsy when I was 3 years of age.

My responsibilities in my caring role have increased over the years. When I was young, I’d help my parents by keeping my brother entertained (which, I must admit, was way more fun for me than my parents realised). We’d play computer games, listen to music and pretend we were radio hosts of our own national program. Phwah, talk about nostalgia!

As I got older, I was able to do more – things like putting my brother to bed at night and preparing meals and feeding him. As I turned 18, I was able to start organising medical appointments and driving my brother around. I, like many other young carers I know, had to ‘grow-up’ quicker than my school friends, and also it meant I was usually unable to catch up with friends after school if I had to be home for my brother.

Now that I’m studying at University, my schedule is more flexible and it’s a lot easier to take time off to take my brother to appointments when we need to. Though it also means I’ve had to negotiate with my parents on when I can and can’t do things.

The only thing I truly hate about being a young carer is not knowing what the future holds. I love my brother so incredibly much, and no matter what happens into the future, I want to know he’ll be cared for. I have visions and ideas of my brother and I moving into our own home together and partying with Dance Central every night – but the reality is, I don’t know if I’ll be able to financially support it. Will I have a job that will both pay me adequately, but also be flexible enough to allow me to fit in my caring role? Will funding and support services be available into the future to allow me to get equipment for my brother without having the struggles we do now to find money? And for me, I’m scared that my brother will end up in a nursing home. I lay awake in bed every night hoping that he doesn’t.

But it’s a little bit of worry for a whole lot of enjoyment. The relationship I have with my brother is extraordinary... and I wouldn’t want it any other way!

Michael’s story is taken from We Care, a 2013 publication

which shares young carer stories. To view the ebook, go to www.carersvictoria.org.au/publications/epub

Michael’s

The 198,797 refugee and family migrants that came to Australia last year will have to manage the many challenges that come from adapting to a new country. There’s a new language and customs to learn, new systems – and many will lose the support of their extended family.

Even in the best of circumstances moving to a new country can be a difficult experience, especially when you’re a young person, and even more so when you’re a young carer.

Refugee and migrant young carers are particularly vulnerable to social exclusion and disadvantage and can have difficulty adapting to their new home. However, many of the people who immigrate to Australia have a strong sense of family responsibility, meaning they are more likely to care for family members but less likely to identify as a carer and seek support. Their reluctance to seek support may also stem from cultural attitudes or stigma about the person they care for, particularly if they have a disability, or a general mistrust of government or other authorities.

Despite their differences, refugee and migrant young carers face many of the same challenges as non-migrant carers. All young carers have to juggle study, work, relationships and all the other things that go with being a young person. In most cases, the same types of supports can make a big difference in the lives of refugee and migrant young carers. Having someone to talk to, getting help with ho mework and respite can be very helpful, particularly when service providers are sensitive to the differing needs of refugee and migrant youth.

There is still a lot to learn about refugee and migrant young carers. More research is being undertaken and extra services and resources are being developed across the community sector.

For more information on available supports contact the Carer Advisory Line on 1800 242 636.

Snapshot: Refugee and migrant young carers

What sort of technology should I buy

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On meeting Jean Taborsak the first thing you notice is how humble she is. During her 84 years Jean has cared for four family members including her husband, partner, mum and daughter, all who have since passed away. Despite these seemingly insurmountable challenges, Jean has continued to dedicate her life to others by volunteering in her community.

Living in a modest yet comfortable home in Glenroy, Jean reflects back to when she first moved to the area over 50 years ago. ‘Back then there was no gas, no electricity…A lot has changed’, she laughs.

It was in 1955 that Jean married her husband Drago, and together they had three daughters: Judy, Sue and Christine. Originally from Yugoslavia, Drago worked as a tram driver, while Jean looked after their children.

Not long after their daughters were born, Drago sought treatment for a lump on his neck. Having been misdiagnosed several times, Drago was finally diagnosed with bone cancer and told he had little time left. Jean soon became her husbands’ carer – dividing her time between looking after their young children, working as a house cleaner to pay the bills, and trying to make Drago as comfortable as possible.

‘I dressed, washed and fed him. He couldn’t move from his bed’.

The hardest part for Jean was coping with the lack of assistance. Back then, Jean said, there were no volunteers to give her a helping hand and no organisations that she could call for support. In all, Jean cared for Drago for just over a year before he passed away at age 43. Drago left Jean to raise their daughters, aged 12, 8 and 6 on her own.

Ever stoic, Jean said that although it was a sad time, she knew she had to get on with life for her daughters sake, continuing to work as a cleaner and child minder for local families while her children were at school.

As her children got older Jean sought out full time work, and became a kitchen-hand, caterer and cook. Jean spent several happy years working at The Palais after seeing a position advertised, ‘I read in the paper that the Palais Ballroom was looking for a kitchen-hand aged 45 or under, well I was 48 but I became 45’.

Many years later, Jean fell in love with David, a taxi driver who Jean describes as ‘the most gentle man around’. Sadly around 20 years ago David learned he had three brain tumours, and once again Jean found herself in the role of a carer. She cared for David until he passed away – taking on the physical and emotional toll that comes from seeing a loved one terminally ill.

When asked how she coped as the carer for so many loved ones, Jean answered, ‘I thought, well thank goodness I’m here to be able to be with them. You just put on a brave face, even if you're a bit worried.’

Jean also went on to care for her mother before she passed away, cooking her food and taking her to doctor’s appointments. Reflecting on her life and her various caring roles, Jean said, ‘When I look back I don’t feel sad, I think about all the wonderful times we had.’

When her eldest daughter Judy was diagnosed with breast cancer, Jean once again stepped up to the plate. As Judy’s health deteriorated, Jean took her into her home where she cared for Judy for four years. As Judy became weaker, Jean’s role as her carer increased to include helping with physical duties such as bathing and helping Judy sit up in bed. When Judy needed to be moved into hospital, Jean visited her every day. Judy lost her battle to cancer 12 years ago now, and although this was clearly a heartbreaking time for Jean, she makes sure to reflect on the good times, such as Judy’s love of horses.

Jean is nothing if not practical, stating, ‘When Judy passed away, I thought – well that’s a relief, she won’t be in pain anymore. I didn’t cry or anything because I learned what’s going to be will be. I even did the catering for the funeral for about 70 people…I always try to remember the good days.’

Jean decided she would share her amazing life story after reading about Carers Victoria’s 21st birthday in the Carers in Victoria magazine. As one of our original members, Jean was surprised to learn how long Carers Victoria had been running, and was keen to celebrate how far our organisation and family carers have come in that time. Reflecting on times when carers received no support, Jean is proud of how far we have come; ‘I’m so pleased that people can get help now, that’s the most important thing’.

It was Jean’s own personal experience as a carer that empowered her to become a volunteer and provide respite for other families in need. In all, Jean volunteered at Melbourne City Mission for 11 years, providing countless hours of respite in that time. It was Carers Victoria’s own ex-President Anne Oakley that presented Jean with a gift on behalf of Melbourne City Mission on her tenth year of volunteering. Despite the emotional challenges of providing respite, Jean loved her work, and went on to volunteer at the Older Persons Action Centre and is trained in providing

interview with a carer Jean Taborsak

people with gentle massage. She has now given gentle massages to thousands of people in need, including to girls at the Juvenile Correction Centre in Parkville.

Walking around Jean’s house it’s clear to see how much she has achieved. Certificates line her lounge room walls, and she is passionate about the work she has done – in particular Jean is passionate about her work as a spiritual healer. ‘When I first became a spiritualist, people thought I was ‘gaga’.’ Jean is not only qualified in gentle massage, but also in reiki and absent healing - volunteering regularly at her local activity centre. Her only regret is that due to an ongoing back injury, she can no longer get on and off public transport, which means her volunteer work now needs to be closer to home; ‘I wish I was younger, and I could do more’.

Though she lives alone, Jean has plenty of company from her heard of animals, with a long-haired Jack Russell called Wags, her cat Minnie and Candy the chicken – who happens to have a liking for cat food.

Jean talks about her daughters and grandchildren with great pride, and adores her 7 grandchildren and 3 great grandchildren. At 84, she’s lived an eventful life but has no plans to slow down anytime soon. On the day of the interview, Jean reflects about the fact that, ‘this is the only day this week I’m not out and about’. Only days before, Jean was volunteering at her local activity centre by providing elderly people with gentle massages to their neck and shoulders, calling the bingo and baking a bread and butter pudding for 18 people.

Jean hopes that this article will help other carers and former carers in some way. She appreciates how difficult it can be for someone to lose the person they care for. Not only must they cope with the sad departure of a loved one, but it can be difficult finding ones place again after dedicating so many years to someone else. It was volunteering that helped Jean to find her purpose and she hopes to inspire other former carers to stay active and involved with their community. Above all, Jean wants to let family carers know how special and important they are, and has one final message, ‘Carers are so wonderful. God bless all you carers!’

Jean and her beloved Jack Russell, Wags.

Jean and a friend practicing spiritual healing.Some of the many awards Jean has received for her volunteer work.

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Carers talk about Mingle 2013

“My first Mingle and it won’t be my last! Thoroughly enjoyed it”

“Great entertainment. Thank you very much!”

“I like to attend Mingle because I meet long-time friends and you

put a smile on my face.”

“I had a lovely time and met up with friends I didn’t expect.”

“It was a great day with laughter and joy.”

“Fun, fun, fun. Thank you!”

We know that many carers speak of the social isolation that comes with their caring role. Mingle has proven to be the perfect setting to explore the importance of staying connected, be it with old friends, by making new friends, finding local services, or re-connecting with past personal interests and hobbies.

This year the theme for our Mingle program was connections - and connect we did.

Thanks to the generosity of the VV Marshman Charitable Trust we were enabled to deliver ten Mingle events across the state to over 900 carers.

We travelled far and wide from Warrnambool, across to Sale, up the border to Shepparton and Wodonga and many places in between. We finished the program at Zinc in Federation Square, Melbourne with over 300 carers coming together to celebrate and connect with others.

Our program was designed to get people ‘mingling’ through group activities; including sharing their story about how they got their nickname, a famous faces quiz and a funny quotes competition.

The delightful Jennifer Daddow from our Education and Training program hosted our Mingle events for the second year

in a row. She often spoke of the golden thread of connection which runs through all of our lives. Jennifer also shared some interesting facts on some more unsavoury connections – such as the distance a sneeze can travel, and the longest recorded burp (18.1 seconds for those who are curious).

We explored the theme of the day by discussing the take home booklet ‘Connections’, which touched on the health benefits of making connections, understanding and overcoming barriers, and how to use technology to stay in touch with loved ones. A phone-tree page in the booklet provided carers the opportunity to record the names and phone numbers of carers they met on the day.

At some Mingle events we had brave carers stand up and share their story with the group. They talked about the importance of making and keeping social connections and how it has helped them personally to sustain their caring role.

Our CEO Caroline Mulcahy also shared with the group, talking about the past 21 years of Carers Victoria. From humble beginnings to how caring families are now recognised within Federal legislation. Caroline spoke of the services we provide and shared some of the ways in which we continue to advocate on behalf of carers across the state.

Crooner Frank lee Darling delighted guests with beautiful music, laughter and dancing. With songs including My Baby Just Cares For Me, a mash up of Elvis songs and Love is in the Air, many carers were up out of their seats for a dance. We saw a couple waltz in Geelong and watched people doing the hokey pokey and conga lines from Bendigo to Ballarat (not literally across the

state…but certainly across various dance floors). Frank was joined onstage at our Melbourne Mingle by our very own Tania Curlis from our Carer Advisory Line for a delightful duet of Que Sera Sera.

Last but not least, we invited carers to reminisce and think of times when cruise liners had fond farewells as passengers threw colourful streamers towards people on the dock. As a symbol of connection, carers threw streamers across the room and were asked to make contact with the person where their streamer landed.

Over lunch stories were shared, friendships were formed and connections were made. One carer let us know that they had made a lunch date with a fellow carer at the Mingle for the following week!

To ensure you don’t miss out on Mingle 2014, be sure to keep your membership up to date, or sign up to receive our ebulletin Voice for regular updates. To subscribe, email your full name and the word ‘Subscribe’ to ebulletin@carersvictoria.org.au

The effect

18 19

Take a break

The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.

~ Ben Okri

Sudoku

5

8

1 95 7 4 2 6

7

33

7 9 4 89 71 8 3 5

95 9 6

21

Solution

125

89721658934

5374286146139527

87421693

63

64375964182

9821537612873459

94

35

89

76

27

41

58

The object of Sudoku is to fill the empty cells with numbers between 1 and 9 (one number only in each cell). A number can only appear once in each nine-square section, once in each row (across the entire grid) and once in each column (across the entire grid).

How to play sudoku

Festive fruit mince pies

Pastry:1 cup plain flourpinch salt180g butter1 heaped TBS sugar1 egg

Fruit mince:1 cup sultanas1/2 cup currants1 cup raisins, chopped60g mixed peel1/2 cup raspberry jam1 grated apple1 tsp nutmeggrated rind and juice of 1 lemon

Method:

Preheat oven to 180°C.

Sift flour and salt and rub in butter. Beat the egg with the sugar, add to the dry ingredients and mix to a dough. Wrap in greaseproof paper and leave in refrigerator 1 hour.

Prepare the filling by combining fruits, jam, lemon rind and juice. Roll out pastry and cut with a fluted cutter to fit the patty tins. Put in filling and top with circles of pastry.

Glaze with water or milk, sprinkle with sugar and bake for 25 minutes.

Recipe courtesy of The Country Women’s Association of Victoria Cookery Book. Carers Victoria members can purchase this book for $18 and Well Preserved for $15 (plus postage and handling). To purchase a book, please contact Jacquie Scales on 9396 9500.

Why I’m a member of Carers Victoria > I’m connected to other carers who understand.

> I can attend special events where I can relax, de-stress and have a laugh.

> I receive practical advice, support and information.

> I have free access to the Carers Victoria library.

> I receive my Carers in Victoria magazine, full of helpfu tips and advice.

> Most of all, I’m a member because Carers Victoria supports me!

Membership is FREE for carers, former carers and carer support groups.

Contact our membership team to find out more on 03 9396 9561 or go to www.carersvictoria.org.au

Thank you for being a member and friend of Carers Victoria.

Together we can ensure that carers now and in the future are acknowledged and supported by our community.

Help us raise awareness and care for the carers, please make a donation today.

We wish you and your family a happy and festive holiday season.

Please accept my gift of:

(Donations of $2 and over are tax deductible)

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(Payable to: Carers Victoria Inc)

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Level 1, 37 Albert Street Footscray VIC 3011 PO Box 2204, Footscray VIC 3011P: 03 9396 9500 F: 03 9396 9555 E: reception@carersvictoria.org.au TTY: 03 9396 9587ARBN 143 579 257 INC NO A0026274M

www.carersvictoria.org.au

Young carers Michael Casha and Courtney howard attending Carers Victoria’s 21st birthday celebrations at Government house. Carers Victoria has programs and services dedicated to supporting young carers. If you would like to know more about our young carer programs, contact our Carer advisory Line on 1800 242 636.

Carers Victoria snapshot...