The care needs of people affected by a brain injury often fall informally onto their parents, spouse or siblings.
Caring for someone can be stressful, and it is important for carers to maintain their own health and wellbeing. Long-term carers find that taking time out for themselves each day is vital for wellbeing, with longer breaks also needed.
The impact of brain injury on families and relationships
The impact of a brain injury has been likened to throwing a pebble in a pond. The ripple effect expands to partners, friends, family, carers, work colleagues and the wider community. There will be changes in relationships and altered social networks for both the person and their family.
Sometimes, family members can experience as great or greater distress than the injured person. The sudden and massive disruption in everyday life and family relationships are likely to have a profound impact.
It is important to recognise that recovery is a process, and each stage will bring its own hopes, joys, as well as challenges and needs.
The hospital stage
It is natural for people to put themselves last when a family member is in hospital, particularly in life-threatening situations. It is important for families to think about their own needs at this time and accept offers of help. Accepting practical help from friends who can step in to take care of children or daily household tasks is advised. Some might coordinate and communicate on a carer’s behalf.
The rehabilitation stage
A supportive family can be an important part of care and rehabilitation. Family engagement in rehabilitation can improve outcomes for people with brain injury. Once the injured person is medically safe, and has been moved to a rehabilitation centre, families can find or start to restore some normality. Friends of the family will need to show patience, as traumatic events cause preoccupation and exhaustion. There may be some comfort in being with other families in the rehabilitation unit who are going through similar experiences.
The return back home: readjustment
Family units are often the primary source of financial and accommodation support. When the person with a brain injury moves back into family life and begins to renegotiate his or her social world, the family will begin to redefine their world as well. There will be a readjustment period.
For many people who sustain a brain injury, returning to the family home is the most desirable outcome for both them and their families and in many cases, the only viable option. However, this can represent a significant loss of independence and self-reliance. Challenges in this stage can lead to family crises and relationship breakdowns if not understood.
Brain injury can have a significant impact on the financial circumstances of the entire family, if the injured person was the main income earner, or if carer responsibilities restrict employment opportunities. Homes may also need extensive and costly modifications (although if the person with brain injury is able to access the National Disability Insurance Scheme, they may receive funding for modifications).
Depending on the severity of the injury, primary carers may find it difficult to leave their loved one and go out. They may want a friend or two to visit, but even that may feel like it is too much. Some friends may feel uncomfortable with the difference they observe in the person with the brain injury, and the carer. In times of grief, often friends can find it difficult to know what to say. Educating friends about the injury can alleviate some of this discomfort.
It helps to seek out support groups and other families who are in similar situations to find some social support.
Long-term
Future plans may be put on hold or altered while the family readjusts to social and financial consequences. There may be personality and behavioural changes in the injured person which change the family dynamic.
Partners: Partners of people with brain injuries will often be affected by taking on extra responsibilities: becoming the sole wage earner, running the house, making most of the decisions and providing support to the person with the injury. Changes in their sexual relationship can occur.
Children: Children may be confused and need time to understand why their parent has changed including why they need care, why they walk or talk differently, and why they don’t remember things. This can lead to acting out, emotional problems, or relationship difficulties. Both injured and non-injured parents can be affected by negative behaviour of their children, particularly when stress is already heightened, with relationship breakdowns and depression being reported as a result. Patience and communication is key so the child fully understands what is happening in their family life.
Friends: Unfortunately, friends and friends of family members can disappear at a time when the person most needs their support. It is common for people who have spent a long time in hospital to feel that they have missed out on a lot of experiences with their friends and that they now have trouble relating to them and sharing their interests. They can feel very socially isolated as a result. Supportive friends learn to adjust their expectations of the person with the injury and seek new activities for spending time together, e.g. watching a game of sport instead of going to a nightclub.
Support Groups: Social support has been identified as an important contributor to wellbeing for people following brain injury. With old relationships being altered, the person with the brain injury may wish to meet other people in similar situations by joining a specialised group rehabilitation program or a less structured brain injury social group. This might also apply to carers and family members who can connect with other like-minded people.
Contact Synapse to join online and in person peer support groups.
The changing circumstances following brain injuries will have a huge effect on the everyday lives of the person with brain injury and their immediate circles. How families respond can have a big impact on the wellbeing of the person affected.
Families can be struggling to adapt to new circumstances, including loss of income and roles changing. This might also include sudden changes in behaviour, emotion and personality from the person with the brain injury.
It is important to seek support for the whole family, so families can draw on their unique strengths to develop resilience, find positivity and cope with this trying time.
Carers need to maintain their own health and wellbeing as part of their caring role.
Important tips for carers
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:
Respite care
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’.
Managing 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:
Regaining control of your life
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.
Depression and 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 you find you have been experiencing a low mood for more than a few weeks, before 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. Synapse may be able to assist you with, or link you to appropriate advocacy organisations.
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 our online brain injury forum or closed Facebook group for carers.
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 or able to give.
Where possible, seek support from other carers and link in with carer organisations.
Social isolation
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 which 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.
Change in roles
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.
Getting to know the new person
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. Theses changes place significant pressure on relationships within the family.
Lack of services and support
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.
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 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.
If you’ve got questions or need advice, support or further information, get in touch with us today. We’d love to help