Self-Care Strategies for Carers and Families - Fact Sheet

A carer needs to be aware of the cumulative effects of daily stressors and use strategies to reduce the impact of stress. Too much stress can have a negative impact on health, so carers may need regular exercise, a balanced diet, regular sleep and rest and relaxation techniques. Other useful strategies include problem-solving on major issues, investigating and altering irrational beliefs, stress-reducing self-talk and meditation.

A balanced life can go a long way to reducing stress. To last the long haul, carers need to balance their needs along with those of their loved one, developing a lifestyle that balances caring with family, hobbies, socialising and work. Time management, goal setting and organisation can help to reduce stressors, create time for enjoyable activities and maintain social support.

Long term carers find that surviving is a matter of taking time out for themselves. Respite care is an essential part of the overall support that families may need. It can be provided in the client’s home or in a variety of out of home settings. Since not all families have the same needs, respite care is usually flexible to fit in with a family’s requirements. It might be for a few hours, a day or longer, and you don’t have to be a full time carer to access services. Make sure you have a regular schedule of breaks using respite care.

Carers often don’t have time for their own personal grief. The losses involved may include the personality changes in their loved one, friends becoming distant, loss of career opportunities, less freedom or personal time and loss of financial security. Grief is an ongoing process in which people may move forwards, backwards or miss different stages. One model has the following stages:

Shock – Numbness and refusal to believe in the reality of the loss. The shock is greatest when the loss is not expected.
Yearning and searching – Effort is devoted to trying to undo the loss despite some awareness that it may not be possible. People may continue to search for signs that the loss has returned (e.g. the person’s memory is getting better).

Disorganisation and despair – As it becomes clear that the loss will not return, individuals can experience a sense of hopelessness and despair.

Adaptation or reorganisation – energy is spent establishing a new way of life with potential for satisfaction and achieving new goals.

Ultimately, it is important for carers to retain a sense of normality in their daily routine regardless of the extreme stress they may be under. People need to remember that they are experiencing normal reactions to abnormal and traumatic life events. Each person’s reaction is unique and it is important to allow for delayed reactions or reactions that are different to your own.

Guilt, anger, resentment, fear, stress, anxiety, depression and grief are some of the emotions that will be encountered while caring for someone with a brain injury. With time, the worst of these feelings will go. It is normal to feel as if you are going crazy at times, and it does not help to try to suppress or deny what you are feeling. There is a reason you are having them, and they will lessen when they are ready.

One common emotion that family members experience is denial. They refuse to acknowledge that things are as bad as they are. They believe that they are handling things just fine, and that everything will be back to normal soon. Although this does not represent reality, it can be a healthy, short-term way for some people to cope. In a sense, denial gives those experiencing it a “vacation” from the constant turmoil they are feeling. Denial can be a problem, however, if the family member has unrealistic expectations about recovery.

The best way to deal with your feelings is to accept them, but make sure you can talk about your feelings with someone who understands, whether it is a family member, friend, counsellor or support group.

At some point, carers will find themselves unhappy with the level of support from a particular hospital, health professional or welfare association. You have the right to expect appropriate support or treatment, and should be assertive in claiming what you want. There are grievance procedures and appeal processes in most cases. Your Brain Injury Association may be able to assist, or link you with advocacy organisations. To get started, there is an online self-advocacy resource at www.bereal.com.au.

Avoid the superhero attitude! You may try to undertake all the caring whilst being a model of patience, courage, understanding and support and sacrificing yourself in the process. Be prepared for times when you feel like quitting, yelling, leaving and breaking down. The caring role is similar to running a marathon—you need to pace yourself for the long haul. Trying to hard in the early stages may mean you lose all your energy further down the track when your caring may be more crucial.

Why join a support group? You can meet others in a similar position, have a break, get information and get support from others who know what your situation is like.

Sharing ideas, feelings, worries, information and problems can help you feel less isolated. Sometimes family and friends don’t understand the condition of the person you are caring for. People in the support group will understand.

Support groups bring together carers in local areas, sometimes under the guidance of a facilitator who is experienced in supporting carers. Often other carers or workers are invited to present information and training. Your Brain Injury Association or Commonwealth Carer Resource Centre can help put you in touch with carer support groups in your area.

Counselling involves talking to someone who understands and can work with you to give you the encouragement, support and ideas to improve your situation. It can be a way to assist with the many changes in your relationships and roles, as well as dealing with the strong feelings associated with caring. Your local Brain Injury Association can put you in touch with support groups or organisations who can provide counselling.

Regular exercise, rest and nutritious food are all necessary in order to withstand stress. Try to plan your day so you get all three. Walking, swimming, yoga, gardening or dancing are good ways to get some gentle exercise.

Learn to relax by listening to pleasant music, meditating or doing specific relaxation exercises can help you sleep better. Try new vegetables or fruit, eating at regular times and looking for new recipes are good ways of making eating well easier. Make sure you laugh regularly, even if you need to get out your favourite comedies on DVD.

Try to relax and enjoy yourself. Maintain an identity of your own separate from the person you care for. Keep your links to the world outside caring. Absorbing interests, having fun and relaxation are all good for your physical and mental health.
Be aware that some friends may tire of you talking about the hassles of being a carer. Some become resentful and lose friends by expecting them to provide more support than they are willing to give.

Where possible, seek support from other carers and don’t expect too much from friends, even if it means pretending to be interested in things other than your own problems as a carer.

There is a lot more information for carers available on a range of topics. Commonwealth Carer Resource Centres are a part of the Carers Association in each State and Territory of Australia, and provide carers with referral to services and practical written information to support them in their caring role. You can contact your Commonwealth Carer Resource Centre on 1800 242 636. All carers can use the services provided by the Carers Association in each State or Territory.

The Translating and Interpreting Service (TIS) can help you if you need assistance with a language other than English. TIS can be contacted on 13 1450.

Agencies that can provide counselling in each State include Lifeline on 13 11 14 and Relationships Australia on 1300 364 277.