The importance of taking great care of yourself
when looking after others
self-care for carers
Are you are carer?
Why is self-care important for carers and family?
Parenting and caring
Caring and stress
Caring for a person with mental ill-health
Things you can do to support yourself as a carer
Planning for an emergency
Additional challenges faced by carers
Caring for a partner
Physical support by a carer
How an occupational therapist can help
ARE YOU A CARER?
Being a carer can mean different things to different people. Often, carers do not identify as being a carer as they may see the role as part of their everyday life, such as being a mother, husband, daughter, grandparent, wife, father, neighbour or friend.
Many family members do not associate with being a carer. They see carers as someone pushing a wheelchair or supporting another person to eat their meal or to help them get dressed. Identifying as a carer may not have been easy or even acceptable to the person—it can make the reality all too real and official. However, identifying as a carer is important as it gives us permission to seek help.
Living with an illness (physical or psychological) or a disability can be difficult both for the person directly affected and for their significant others. While treatments normally focus on the person with the diagnosis, carers often need assistance too. The best outcomes occur when both the person and the carer keep well.
This ebook draws on the experiences of carers, together with knowledge from occupational therapists and carer peer support workers, whose work involves supporting families and carers. It covers why it is important for carers and family members to look after their own wellbeing and discusses ways to achieve this.
WHO IS A CARER?
1 Carer Recognition Act, 2010, Guidelines - April 2016
‘…carers are people who provide personal care, support and assistance to another individual in need of support due to disability, medical condition, including terminal or chronic illness, mental illness or is frail and aged.1’
While carers are a diverse group, who may work in both paid and unpaid roles for the purpose of the ebook, we will focus on upaid carers who are people actively involved in caring for a family member or friend, who may or may not be living with them. Carers can range from a parent caring for their child to a young person caring for their parent, or to a friend or neighbour caring for someone they know. Carers also include extended family such as grandparents or other relatives.
The Australian Government provides the following definition of a carer:
For a more interactive overview of carers, watch this video from Carer Gateway.
Evidence shows that long-term caring can have an impact on both our physical and emotional health6.
How stress can affect us:7
Increase in heart rate, breathing and blood pressure
Increase in muscle tension which can affect the way we carry out our daily tasks
Increased demands can lead to fatigue and exhaustion
Difficulty in managing our emotions effectively day-to-day. For example, we may become angry or frustrated more quickly
Higher vulnerability to experience anxiety and depression
Negative effects on memory, including forgetfulness
Developing a sense of hopelessness
Changes in sleeping patterns
Increases in undesirable behaviours such as drinking, smoking or gambling
Impacts on eating habits with possible weight problems
Becoming more accident-prone
Caring comes in many different forms and being a carer can affect people in different ways and at different stages of their lives.
Evidence shows that when carers and family members look after their own health and wellbeing, it leads to better outcomes for everyone—including the individual they care for2.
While caring for a family member or friend can be a fulfilling and positive experience, it can be hard work too. It’s important to remember that carers also have their own health and wellbeing needs3 4.
Taking great care of yourself can include:
Deciding on your level of involvement as a carer
Taking time out, away from your role as a carer
Attending to your own health and emotional needs
Maintaining positive relationships with those close to you
Remaining engaged in cultural, recreational and physical activities outside of home 5
Why is Self-Care Important
for Carers and Family?
2 Chenoweth et al 2016
3 Cummins et al
4 Bourke-Taylor 2016  Carers Strategy, Victoria, 2018
5 Carers Strategy, Victoria, 2018
Parenting and Caring
Being part of a family unit can be challenging enough, yet when someone becomes unwell or has a disability, this creates additional challenges.
As a parent caring for a child (with or without a disability), the wellbeing of the family unit as a whole (and that of the individual child) comes down to the wellbeing of its main carer/s.
Parents are often seen as the glue holding all of the pieces of the family together. Looking after yourself and staying well as a parent helps the family unit and all its members to thrive.
6 Ept et al
7 Better Health Channel
Caring and Stress
Caring for a Person with a Mental Illness
Supporting a person with a mental health diagnosis can be challenging due to the sometimes unpredictable and episodic nature of the illness. There are often enduring secondary symptoms of some psychiatric illnesses which in some cases are not helped by medication. Carers can be dealing with both short-term mood or psychotic symptoms and long term sub-acute symptoms.
An Australian Institute of Family Studies research report indicates that mental health carers also have a greater risk of experiencing anxiety or depression themselves. The sense of grief and loss can be overwhelming and something that is not socially acknowledged, making accessing support even more difficult.
With these considerations in mind, it is imperative carers look after themselves—not only so they can continue their caring role, but for their own psychological and physical health.
8 Hodgetts et al; Kniepann et al
9 Cummins et al
When our lives become busy or our loved ones experience a crisis, often one of the first things we overlook is caring for ourselves. We may stop doing the very things that give our life meaning and contribute to us thriving as individuals. 8 9
THINGS YOU CAN DO TO SUPPORT YOURSELF AS A CARER?
WHAT HAVE I STOPPED DOING?
WHAT AM I MISSING & LONGING TO TAKE UP AGAIN?
Art & Craft
Take some time to consider what you have ‘given up’ or stopped doing in order to carry out your caring role. Consider what you are missing or are longing to return to. What it is about that activity you are missing?
As you complete the table, it’s helpful to think about:
What new activity would I like to explore?
What’s stopping me from doing this?
What’s the next step I need to take to make this happen?
Who could I ask to help me?
Messages from other carers about self-care 11 include:
The Carers Australia website provides more ideas to help you look after yourself.
Carers Australia describe how, to support yourself as a carer, you can 10:
Acknowledge and deal with your feelings, especially grief, which is a natural reaction to loss and trauma
Ask for help when you need it
Use available support services
Take time for yourself
Exercise, eat well and rest
Keep active socially
Attend a carers group when you feel you need support
“Don't blame yourself or let others blame you”
“Talk with other people who have been through
“Keep up with other friends”
“Being part of nature… escaping outdoors”
“Know your own boundaries…what you can and
“Optimism helps… seeing the positives”
“Having compassion… for yourself too”
 Rural Carers Project
10 Rural Carers Project
11 Rural Carers Project
There is much evidence to support the benefits of peer (carer to carer) support and attending mutual support and self-help groups12 13. Try contacting the service where your family member or friend is receiving support and ask about peer support or support groups where you can meet other people who are caring for a loved one in a similar situation. Peer support greatly assists in feeling less alone and in providing hope and promoting self-care14.
Try to stay engaged in the activities and hobbies you enjoy. Traditional activities, like knitting and woodworking, have been found to act as antidotes to the stresses of modern life15.
Self-care activities, such as yoga, can help with maintaining your own wellbeing so that you are able to support others16 17.
self-help and peer support
Maintaining a healthy balanced diet is of particular importance during times of stress18. For more information on healthy eating, visit the Better Health website.
12 Bourke et al 2009, Bourke et al 2015
13 Greenwood, Habibi & Mackenzie, 2013
14 Repper and Carter, 2011
15 Luckman 2018
be active and engaged
Self-Care Example - Yoga
Yoga is a holistic approach to health and wellbeing. It can help to:
Increase and maintain range of movement, release muscle tension,
build strength, flexibility, balance and coordination, stimulate lymphatic system to enhance immunity
Counteract the effects of stress
Improve breathing capacity (depth and length) and the circulation of oxygen throughout the body, regulate blood pressure, calm or stimulate the nervous system as needed, relieve tension and restore energy
Provide benefits for the body (both physically and physiologically), the breath, the mind (psychologically) and enhance mood/attitude
(Bussing et al)
It’s important to find a healthy balance between caring and other responsibilities vying for our time and resources (both mentally and physically). Consider talking to your employer about flexible work arrangements, or building a team of support people around yourself and the person you care for so that you are not carrying all of the load.
balancing work and caring responsibilities
getting professional support
Routines which help you to enter a relaxed state and creating a sleep environment can assist in getting a good night’s rest. Think about how much light, noise or music is helpful for you and tailor your sleep environment accordingly19.
If you continue to encounter trouble sleeping, talk to your doctor as they may be able to provide short term assistance. Additional suggestions for a better night’s sleep can be found at the Better Health website.
Should you require additional supports, don’t be afraid to talk with your medical practitioner about your support needs. As you do, it may be helpful to consider a Mental Health Plan which can identify the type of assistance you may need and can help in accessing a mental health professional.
getting a good night's sleep
Doing things mindfully can help to manage stress and our emotions 20. If mindfulness interests you, or you'd like to try some mindfulness and relaxation exercises, you can find a plethora of apps to download on your mobile device, one example being the Smiling Mind App.
You could also look in your local library for mindfulness books or activities or ask a friend to find some information for you.
 Eberth, 2012
There is value in taking smaller breaks throughout the day for yourself, and in planning larger breaks over longer periods of time. Give yourself permission to have fun or just sit on the sofa! Carers often deny themselves fun/time throughout the day to renew their energy levels which can quickly lead to burnout.
Respite services are available to provide care for your loved one whilst you take a break. For more information on respite, visit Carer Gateway.
respite: take a break
20 Eberth, 2012
Mindfulness helps to shift awareness away from the thinking mind which is often the origin of worries and stresses into the present moment.
Mindfulness involves being aware of the range of sensations experienced through the body, including breathing, passing thoughts and emotions.
Mindfulness asks one to become an onlooker in any given moment; to observe what is present without judgment or attachment to those observations.
planning and working in partnership
Planning for an emergency
Before emergencies happen, it’s important to have a plan. Together with your loved one or friend (if they have capacity) and a trusted professional, write out a plan of what to do in the event of an emergency or crisis. Identify the warning signs to look out for and actions that can be put in place to help manage the situation.
When the person you care for is hospitalised
You may experience mixed feelings when the person you care for is hospitalised, there may be a sense of relief that they will be cared for by a dedicated health care team yet their wellbeing will still be of concern to you. Hospitals can be a daunting place for carers and their family. When making contact with a hospital, experienced carers suggest:
Write notes and keep a list of questions to ask
Aim to work in partnership with your loved one and staff
Realise that the experience can be a time for you to step back and take care of yourself.
You have a right to talk to the treating team
Ensure that the treating team are communicating well with you to relieve any fears. You can also speak with a carer peer worker or request a family meeting.
You may talk to the treating team about your concerns if you feel the person cannot return home. This may be a good time to consider a transition for your family member if other care arrangements are required.
Financial stress and financial support
The Australian Government provides financial help to carers through a carers payment and a carers allowance, administered through Centrelink. These forms of assistance include Carer Concession cards; Carer Payment or Carer Allowance.
Support if you, as a carer, become unwell
Emergency and short term respite care is available to assist in caring for your loved one if you become unwell or are unable to. Visit Carers Gateway for information on emergency respite.
additional challenges faced by carers
Dealing with grief and loss
Carers may experience many emotions when they are caring for someone born with a disability or medical condition, or when someone they care about becomes unwell. The dreams and hopes that both carers and their loved ones had may now cause feelings of loss or grief. While it is important to acknowledge what has may have been lost, try to think of the experience as a journey. Good can come from all of life’s experiences, such as increased wisdom, understanding, compassion and empathy.
Boundaries are guidelines, rules or limits. They are for physical, psychological, emotional and financial protection.
Don’t become over involved
Try and find a balance between supporting your loved one and getting on with your own life. Rather than trying to fix their life, instead support your loved one to find their way.
Carers often feel guilty because they feel responsible in some way. Feelings of guilt can stifle our ability to provide effective support to our family member. Remember, you are not to blame.
Try to find acceptance
Many carers do not want to be “disloyal” to hope; they do not want to give up on the hopes they have for their loved one. We may not like the outcome, but we can still accept it. This can reduce stress, anxiety, over involvement and is much better for our self-care.
It’s important to get information that can help you understand what is happening, and where you can go for support. Be sure to browse the websites on the next page
You are not alone—even when it feels like it. Know that other young people have similar experiences. Peer support groups can help you connect with other young carers
Get connected. Young carers can often feel lonely or isolated. It can be hard for young carers to go out or to bring friends home. Find local groups and services that offer peer groups and other activities you enjoy
Do things you enjoy. It’s important for you to have fun in your life and to do things that other young people do—join a club, play a sport, or catch up with friends. Be sure to talk to someone if you need help to do these things
Get support. It can be tricky to juggle caring with school, university or work. Talk to someone about how you can balance these activities in your life—you may be able to receive support with homework or change your hours or subjects. Young carer services can help you if you’re not sure who to talk to
Take care of yourself too. It’s important to look after your own physical and mental health. Try to make time for exercise, eating well, getting good sleep, and talking to someone if things are stressing you out
Need a break? Contact the Commonwealth Respite and Carelink Centre on 1800 052 222
No Money? Financial support is available through the Young Carers Australia Bursary Program
Know your rights. Carer Associations in your state or territory can help you understand your rights and gain access to information and support you might need. Call 1800 242 636
Online resources for young carers
Young Carers Australia: A place for young carers to share their stories and opinions, attend live webinars and learn new skills
Children of Parents with a Mental Illness: This site offers information about services and activities near you, with online support and information
A note for young carers
Young carers (under the age of 25) often care for a parent, grandparent, or sibling with a chronic illness, mental illness, disability or drug/alcohol addiction.
Young carers may manage household duties like cooking, cleaning and shopping. They may provide personal care like helping with medication or helping with showering, feeding or mobility. They may also provide emotional support including keeping an eye on someone, or contacting services.
Many children and young people with care responsibilities don’t see themselves as ‘carers’—it’s just what they do. While being a young carer can often be a stressful experience, often the role is a valued and important one.
Partner carers are in a chosen relationship which is distinct from other care relationships.
Caring for Your Partner
Partner carers can experience some unique challenges, including:
Relationships can become one sided as the unwell partner may not be able to manage their previous responsibilities
Financial hardship may occur if dual income families become reduced to a single income
Intimacy may be affected and this impacts greatly on the relationship
Child raising can become affected
Unique feelings of grief and loss for partners is a natural part of the grieving process
Social life may be impacted
Please refer to page 9 - Things You Can do to Support Yourself as a Carer section for strategies to help you look after yourself as a partner carer.
Caring for Someone with Dementia or Cognitive Decline
One way to support a family member or friend when there has been a change in their cognitive ability is to gain an understanding of their likes and dislikes. Take the time to learn how they best communicate with others, as this helps to retain or foster a positive connection.
As a person experiences changes in their cognition, carers also need to adjust and learn a new relationship with their loved one. This can be a challenging time, as letting go of the relationship that once was can be met with feelings of grief and loss for carers, family and friends.
It is important for carers to be supported in this transition time. There are many resources that can assist you in caring for your relative or friend with dementia (as well as yourself), including:
· Dementia Australia website
· Dementia Strategies for Carers video
Caring for Someone with a Disability
As a carer for someone with a disability, you will have a strong and unique understanding of their needs and goals within the home and community. The National Disability Insurance Scheme (NDIS) may be an appropriate path to follow in seeking supports for your loved one.
The NDIS recognises that the role of carers is essential in supporting people with a disability to realise their goals and welcomes carer input when planning individual supports. You may like to prepare some notes or a carer statement to bring along with you to the planning meeting.
While it is not a requirement of the National Disability Insurance Agency (NDIA) for you to prepare a carers statement for a planning meeting, it could assist in developing the prospective participant’s plan, helping to identify the current involvement of carers and supports already being received. The following points may help you consider your goals, concerns, roles and responsibilities as a carer and help the NDIA planner to better understand the bigger picture for your loved one:
The goals you have for your loved one (they may have their own or you may develop these on their behalf)
Informal and formal supports you currently have in place. These may include family members, friends and services in the community
Additional supports you may require, including therapies and assistive technology/equipment
What a regular day/week looks like for your loved one (i.e. daily routines, activities and appointments) and how much time you spend assisting
your loved one
The NDIA has partner organisations in the community who can provide information, referrals and linkage to ensure families and carers can access supports in the community to assist them in their role. As a parent, guardian or nominee of someone with a disability, you are able to contact the NDIA directly on their behalf. Visit the NDIS website for further information on the NDIS for carers.
If you are caring for someone with physical needs (including those who are ageing or living with a disability), part of your role as a carer may involve physical assistance to complete activities of daily living. Whether you are lifting a child onto the toilet, helping an elderly person to walk using a walking frame, or supporting someone in and out of the shower/bath, both your own and their physical safety depend greatly on how you use your body and the environment to support these tasks.
Strategies to help ensure physical safety include:
Keeping physically fit and active yourself is important in maintaining strength, balance, coordination and range of movement of your own body as you support another’s
Becoming aware of effective manual handling techniques specific for your loved one and the environment they live in can reduce the risk of injury to yourself and your loved one
Exploring environmental modifications (e.g. rails and ramps) or adaptive equipment (e.g. shower/toilet commodes and hi-low beds) to ensure the safety of both your family member and yourself as the carer
Physical Support by a Carer
How an Occupational Therapist Can Help
21 WFOT 2012
22 Bourke et al 2015
23 Dunn, W. 2007
Occupational therapy is a client-centred health profession concerned with promoting health and well-being through occupation not only for individuals but also for families and communities. Occupational therapy assists people to participate in the activities of everyday life, enhancing their ability to engage in the things they want to, need to, or are expected to do21.“
How do occupational therapists work with carers and family?
Occupational therapists can provide practical assistance to you and the person you provide care for. They may assist you in exploring your own health, well-being and personal life skills, or look at adjusting the environment you do your occupations in, or adjusting the occupation itself.
Occupational therapists work with people to help make everyday living easier, by:
Assessing daily living skills including self-care and independence skills
Modifying the environment or using assistive equipment / technologies
Providing support groups and education for carers; including peer support22
Assisting people to find balance with other areas of life
Helping you manage stress and emotional wellbeing
Enabling carers to consider other valued life roles and how you can work toward your own goals 23
Where can I find an occupational therapist to help me?
To find out how an occupational therapist can help you, and to obtain a referral under Medicare speak to your GP
The services you already access may employ an occupational therapist to support you and your loved one – make an enquiry
To find a private practice occupational therapist visit About Occupational Therapy Australia and view the Find an OT directory.
To find an occupational therapist in your local area via the National Health Services Directory
Carer Services and Websites
Department of Social Services (DSS) - Disability and Carers Information
National Disability Insurance Scheme (NDIS)
"Through these creative therapies, you can reflect on your life, leave a legacy, and say goodbye to those you love10."
You may have heard a flight attendant instructing; “In the event of an emergency, please put on your oxygen mask before assisting others.” The message is clear. You need to take care of yourself before you can effectively take care of someone else.
Whether caring is a full time role or whether you see it as part of your everyday life, looking after yourself allows you to take better care of those close to you.
While caring for a family member or friend can be a fulfilling and positive experience, it can be hard work too. Knowing (and practising) effective ways to look after yourself can help you cope and assist others in your caring role. Caring for—and prioritising—your own wellbeing leads to a better outcome for all involved.
What I am doing for myself is...
What I want for myself is...
Better Health Channel. https://www.betterhealth.vic.gov.au/health/HealthyLiving/stress retrieved 26 August 2018
Better Health Channel. https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/sleep-hygiene
retrieved August 2018
Bien, T. Mindful Therapy. Wisdom Publications. ISBN 9780861717156. March 2011.
Bourke-Taylor, H. (2016). Supporting the health and occupational participation of Australia's carers. Australian Occupational Therapy Journal, 63, 141–142. doi: 10.1111/1440-1630.12305
Bourke, C., Sanders, B., Allchin, B., Lentin, P & Lang, S. (2015). Occupational therapy influence on a carer peer support model in a clinical mental health service. Australian Occupational Therapy Journal, 62, 299–305. doi: 10.1111/1440-1630.12235
Bourke, C., Allchin, R., Lang, S., Sanders, B., & McKenzie, P. (2009). COPES: Carers offering peers early support. A decade of an evolving model of carer peer support within a clinical service. Ringwood, Victoria, Australia: Eastern Health Adult Mental Health Service. ISBN 978-0-9577427-5-8
Bussing et al, Effects of Yoga on Mental and Physical Health: A Short Summary of Reviews
Chenoweth, L., White, D., McNeill, G., Jeon, Y., & Zaratan, B. 2016 Coaching in self-efficacy improves care responses, health and well-being in dementia carers: a pre/post-test/follow-up study BMC Health Serv Res. 2016; 16: 166. Published online 2016 May 4.
Commonwealth of Australia, Carer Gateway. 2015. https://www.carergateway.gov.au/ Retrieved August 2017.
Commonwealth of Australia, Carer Recognition Act 2010, Guidelines. (April 2016) A guide for Australian Public Service Agencies for the implementation of the Carer Recognition Act 2010.
Cummins, R., Hughes, J., Tomyn, A., Gibson, A., Woerner, J., & Lai, L. (2007). The wellbeing of Australians: Carer health and wellbeing. Geelong, Australia: Deakin University & Australian Unity.
Dunn, W. 2007 Living Sensationally: Understanding your Senses
Edwards, B. 2008. The nature and impact of caring for family members with a disability in Australia, in Research Report 16. Australian Institute of Family Studies. Retrieved August 2018 https://aifs.gov.au/publications/nature-and-impact-caring-family-members-di/8-
Eberth, J., & Sedlmeier, P. (2012). The effects of mindfulness meditation: a meta analysis. Mindfulness, 3(3), 174-189.
Epel, E., Blackburn, E., et al (2004). Accelerated telomere shortening in response to life stress. Proceedings of the National Academy of Sciences USA . Dec 101(49): 17312–17315.
Greenwood, N., Habibi, R. & Mackenzie, A. (2013) Peer Support for Carers; A Qualitative Investigation of the Experiences of Carers and Peer Volunteers. American Journal of Alzheimers Disease & Other Dementias.
Hodgetts, S., McConnett, D., Zwaigenbaum, L., & Nicholas, D. (2014) The Impact of Autism Services on Mothers' Occupational Balance and Participation. OTJR: Occupation, Participation & Health 34:2 81-93 https://doi.org/10.3928/15394492-20130109-01
Kniepann, K. (2012) Female family carers for survivors of stroke: occupational loss and quality of life. British Journal of Occupational Therapy, 75(5): 208-216. doi.org/10.4276/030802212X13361458480207
Luckman, S. 2018. How craft is good for our health. https://www.smh.com.au/lifestyle/health-and-wellness/how-craft-is-good-for-our-health-
20180727-p4ztyh.html retrieved August 2018.
Pascoe, M. 2018 It’s not all in your mind: how meditation affects the brain to help you stress less. The Conversation, https://theconversation.com/its-not-all-in-your-mind-how-meditation
-affects-the-brain-to-help-you-stress-less-97777 retrieved August 2018
Repper, J. & Carter, T. 2011. A review of the literature on peer support in mental health services. Journal of Mental Health, 20(4), 392–411 doi:10.3109/09638237.2011.583947.
Smiling Mind https://www.smilingmind.com.au/, retrieved August 2018
State of Victoria, Department of Health and Human Services, Recognising and supporting Victoria’s carers Victorian carer strategy 2018–22, June 2018.
State of Victoria. 1999. The Rural Carers Kit.
Occupational Therapy australia
Occupational Therapy Australia would like to thank the authors of this resource for their valuable contribution.
Cate Bourke, Occupational Therapist
Michelle Hegarty, Occupational Therapist
David Neef, Senior Carer Peer Worker
Marie-Claire Ryan, Occupational Therapist
Nina Cook, Senior Carer Peer Worker & Carer Consultant
Bronwyn Sanders, Occupational Therapist
Images sourced from pexels, unsplash & shutterstock
Occupational Therapy Australia 2018
All copyright and publication enquiries should be directed to firstname.lastname@example.org
Occupational Therapy Australia (OTA) is the national professional association for occupational therapists in Australia.
Our members are occupational therapists, students and those working in the profession in a variety of practice areas to enable people to participate in meaningful activities.
Disclaimer: This ebook provides general information only. The content provided in this ebook, and in any linked materials, are not intended and should not be construed as direct medical advice. If the reader or any other person has a medical concern, they should consult with an appropriately registered health professional.
1300 682 878