Synapse - reconnecting lives

Carers need to maintain their health and wellbeing to provide the best frame of mind to care for another individual.

Maintaining your health and wellbeing provides the energy and capacity to endure the challenges that you may face in your role. Good health and wellbeing mean that you can provide the best care to your loved one.

Some of the most 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 carers group for support
• access all available services and funding
• acknowledge and deal with feelings. 

Respite care

Long-term carers find that taking time out for themselves is vital for survival. It 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 good quality services around that can make a big difference to helping you care more effectively. 

Stress

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
• investigating and altering irrational beliefs
• meditation
• counselling. 

Regaining control of your life

In the aftermath of a brain injury, a family tends to put life on hold and focus everything on the person with the brain injury. However, in the long term families often find this never changes, and the whole family begins to suffer. 

Carers need to establish a balance in life that allows enough self-care to be  effective over the 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 as much as possible. 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 injured family member all by yourself indefinitely!

Depression & difficult feelings

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.

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 it becomes a serious issue. 

Self-advocacy

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 organizations. 

Support groups

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 an online brain injury support group. 

Maintain your friendships

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 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.

Plan for the future

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 through all the potential future problems and make plans now. It will bring peace of mind to yourself, family and the person you are caring for.

Plan for future emergencies and events this way you are ensuring the best possible care for the person that you provide care to. By planning ahead will also ensure minimized stress for others if you are unable to provide care.