Self-care for carers and family members

Maintaining your health and wellbeing provides the energy and capacity to navigate your caring role and other parts of your life such as family and work. Good health and wellbeing mean that you can provide the best care to your loved one and yourself.

Some important tips for carers include:

• ask for help when you need it
• take time for yourself (e.g. respite services)
• exercise, eat healthily and sleep well
• relax regularly
• keep up social contacts
• attend a carer’s group for support
• access all available services and funding
• acknowledge your feelings and accept them as a natural response to the If you are feeling overwhelmed by your feelings, speak to a clinical psychologist for some tips on ways to regulate your feelings and some ideas on self-soothing.

Long-term carers find that taking time out for themselves is vital for wellbeing. Respite care can be provided at home or in a variety of other settings, for just a few hours or even a week to allow a holiday. Make sure you have a regular schedule of breaks using respite care. Initially, families may dislike a stranger caring for their family member, but there are plenty of services around that can make a big difference to helping you care more effectively. For those eligible, the National Disability Insurance Scheme (NDIS) is also able to provide respite, known as ‘short-term accommodation’.

The cumulative effects of stress can build over time and not be noticed until problems emerge. Apart from exercise, diet and regular sleep, there are plenty of useful strategies for managing stress, including:

• problem-solving on major issues
• talking to friends
• exercise
• meditation
• counselling.

In the aftermath of a brain injury, a family understandably tends to put life on hold and focus everything on supporting the person with the brain injury. However, in the long-term families may find this single focus remains, and the whole family begins to suffer.

Carers need to establish a balance in life that allows enough self-care to enable them to maintain their caring role long-term. Respite care is an important part of this, but it also means good time management and priorities to allow everyone’s lives to return to normal. Make time for your usual hobbies and interests as much as possible.

It is easy to fall into the role of ‘super carer’, thinking you can work, look after the rest of the family, and care for your loved one single-handedly and indefinitely. Many people find this tough to manage longer term and require additional support and strategies.

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 away. 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.

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. Depression is always a potential concern for carers, and you should seek professional help if you find you have been experiencing a low mood for more than a few weeks, before it becomes a serious issue.

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. Synapse may be able to assist you with, or link you to, appropriate advocacy organisations.

You can meet others in a similar position, have a break, find information and get support from others who know what your situation is like. Sharing ideas, feelings and concerns can help you feel less isolated. Sometimes friends won’t understand your situation, but a support group will. If there are no support groups in your area, consider joining our online brain injury forum or closed Facebook group for carers.

Maintain an identity of your own separate from the caring role, and keep your links to the world outside caring. Be aware that some friends may tire of you talking about the problems of being a carer. You may become resentful and lose friends by expecting them to provide more support than they are willing or able to give.

Where possible, seek support from other carers and link in with carer organisations.

A common issue faced by carers is the feeling of isolation that can occur after brain injury. Friends and family often drop away when they don’t understand the impact of a brain injury, and distance themselves to avoid embarrassment or being offended. Emotional and behavioural changes can occur after a brain injury which often lead to social situations that are strained and/or embarrassing for the carers and the person impacted by brain injury.

Carers often need to constantly adapt to new situations due to the unpredictable nature of the effects of a brain injury.

Another issue that carers face is the changing of the roles within their family. The lack of employment opportunities for people with disabilities, costs involved with caring, lack of time, and the everyday costs of running a household places a significant financial strain on themselves and their families.

The behavioural issues after a brain injury can have a tremendous effect on day-to-day life for carers. These can include emotional and personality changes, violent outbursts, substance abuse and inappropriate sexual behaviour. These changes place significant pressure on relationships within the family.

A major issue is the frequent lack of appropriate services and support available for carers and their family member when they return to work, study and/or the wider community. A common issue for carers is the lack of knowledge of where, who and what they need to be looking for in terms of support.

Where possible, it’s better to act than react. Instead of worrying about the future (e.g. who will take on the caring role if you can’t?) think about what may lie ahead and make plans now. It will bring peace of mind to yourself, family and the person you are caring for.

Planning for future emergencies and events can give you some peace of mind and reduce your stress.