Looking after yourself as a carer

When caring for a loved one with a life-limiting illness, it is important to look after your own health and wellbeing. This helps you to have the energy and strength required for your role as carer. There is support available to help you and your family through these difficult times.

It is important for you to keep doing the activities you enjoy outside of your caring role. Taking regular breaks from caring will help you avoid becoming worn out. Take the time to do something for yourself every day.

Don’t feel guilty about caring for yourself. Many people receiving care feel better if they know their carers are taking time for enjoyment and rest. It may not be possible to take away all the stress but taking some steps to look after yourself will help.

Carers – your health and wellbeing

It can be easy to put your own needs last, but it is important if you are feeling tired or stressed to look after yourself so you are still able to care for the person that needs you the most.

• Get some exercise. Do something physical like a walk or stretching. Try and do an exercise you enjoy. It will help you maintain your energy.
• Get enough sleep. Carers often have trouble sleeping. Limit coffee and alcohol especially in the latter part of the day. Try relaxing with a warm bath or herbal tea or soothing music before bedtime. If you can’t fall asleep after 20 minutes, get up and do something else then try again. Try a brief rest in the daytime if your night’s sleep is disturbed. If you find sleeping difficult on a regular basis, see your nurse or doctor.
• Maintain a healthy diet. Sometimes this can be hard, especially if your appetite is not so good. But you need your strength so eat a balanced diet and remember to ‘treat’ yourself sometimes with food you enjoy.
• Do something for yourself every day. List ten things you enjoy that would give you a short break and renew your energy. Do one of these each day.
• Be social. Try to maintain social contact with friends and keep up your usual activities as much as possible.
• Practice your own spirituality or religion. Whether it be meditation, yoga, prayer or discussion with a pastoral worker, maintaining religious or spiritual practice will help you look after yourself.

Carers – your emotional health

The emotional demands of caring for someone with a life-limiting illness can be high. As a carer, it is important to look after your own emotional needs. This is important so you can continue your caring role and maintain your own emotional resilience.

If the situation seems hopeless, some people find it helpful having hope for small things. For example, you may not be able to hope for a cure, but you can hope your loved one has a good day today.

Friends and family can offer significant support, but you may find it helpful to speak with a healthcare professional such as a counsellor. Often someone without an emotional connection to you or the person you care for will help you see things clearly.

A counsellor can help by:

• suggesting strategies for managing relationships
• giving you ideas for keeping communication channels open
• advising you how to balance your caring role with your own needs.

Many healthcare professionals and services offer some level of counselling support. Start by speaking with your doctor. They may then refer you to a specialist counselling service, if needed.

Carers – accepting help

Often it is reported by carers that they didn’t seek help for themselves as their loved one’s needs were more important. Carers also felt the palliative care team was too busy to ask for help.

Remember that you are an important part of the care team and your wellbeing is vital to being able to provide support. Don’t be afraid to ask the palliative care team for help. There are other options for assistance such as trained volunteers.

Part of the palliative care team’s responsibility is to provide you as a carer with assistance and support, so don’t be afraid to ask for help.

Carers – using respite services

Carer support and respite services can help you to take a break from your caring role. Ask your palliative care service about your respite care options. You could have a volunteer stay with your loved one while you take a short break. If you need a longer break, the person you are caring for could go into respite care, so you can have some time away to rest and recuperate.

If you are feeling distressed, frustrated, guilty, exhausted, or annoyed, it is important to know that these feelings are normal. If you find your role as a carer overwhelming, it may help to discuss your feelings with your GP or a counsellor.

More suggestions for help for carers

Other ideas that may help you, and that you may not have thought of, include:

• Take one day at a time. While thinking about the future is normal, try and focus on the challenges of caring just one day at a time.
• Make a list of friends or relatives that can help. A list can clarify how many others you can call on. If no one is willing, ask the palliative care team about extra help or volunteers.
• Keep a diary of issues. This can help you keep track of issues and serve as a reminder when family meetings with the palliative team occur, or others ask for information.
• Ask friends or relatives to prepare meals. People are often willing to help. If this isn’t possible consider a home delivery service for meals.
• Ask a friend to stay overnight. It may help you get a good night’s sleep and provide extra company.
• Discuss flexible work options with your employer. Many employers offer flexible working arrangements. Talk to them about possible options.
• Get someone to do your household chores. Ask a relative or consider a local private service or access help at your local council.
• Set up a roster. Caring for your loved one could be shared by using a roster system if more than one person is providing care.
• Consider a regular email update to friends and relatives. This can keep people updated and reduce the number of phone calls to make.
• Give yourself regular rewards. Take a break, do something special that lifts your spirits and makes you feel good.

Carers Victoria advisory line

Carers Victoria provides counselling and practical resources to support you in your caring role.

Contact the Carers Victoria advisory line on 1800 242 636 from anywhere in Victoria between 8.30 am and 5.00 pm Monday to Friday (except for public holidays).

Carers Victoria can arrange interpreting services with the national Translating and Interpreting Service (TIS National) if English is not your preferred language.

Palliative care guidebook for carers

Palliative Care Victoria has published a useful guidebook for carers called Supporting a person who needs palliative care: a guide for family and friends.

The book is provided free of charge and by Palliative Care Victoria.

Where to get help

• Your GP (doctor)
• Palliative Care Advice Service
• Palliative Care Victoria Tel. (03) 9662 9644
• Your palliative care provider