Consequences for the Family
Brain injury can be a major source of stress for close family members. In the case of severe brain injury particularly, it starts with acute stress at the time of the trauma and the anxiety of being by the bed of a loved one, helpless to intervene, while waiting for the first signs of recovery.
It continues as close family members and friends share the painful struggle for the ABI survivor to begin the long path to some kind of normality. During this time the family is a lifeline to the individual, providing comfort, reassurance and support. Different family members and friends do this in their own way as they too come to terms with the impact that brain injury can bring to the family unit.
This all takes its toll. Families can go through a vast range of emotions – high levels of anxiety, hope, despair, anger, frustration, negative feelings and guilt that they may somehow be responsible for what has happened. These close family members have to take on the role of therapist, at times unaided, trying to redevelop their loved one’s lost skills. This can be a source of friction for all concerned. The individual’s emotional and behavioural problems are particularly difficult to cope with, though they will often decrease over time.
The dedicated care that close family members give is crucial. However, it can also result in a loss of outside interests through having little free time anymore. There is often a withdrawal of support from friends and wider family members as they get back to leading their own lives. Because of this, many families may experience a sense of social isolation and a feeling of being trapped – similar to that experienced by their loved one. Research suggests that lack of information, financial concerns and legal battles all add to stress levels.
Eventually the family will face the sometimes very difficult task of adjusting to the many changes in their loved one. Changes in personality tend to impose the greatest strain on the family unit and people will experience grief and depression over what has been lost. Grieving for a person is very difficult when that person is still with you and the need for practical support is ongoing.
Partners/spouses often have particular difficulty in adjusting following a brain injury, especially if there are severe personality changes. They may feel that they have lost their mate – “They’re not the person I knew.” Roles within the family unit may have changed significantly. The male breadwinner may now be the dependent. Many partners feel that the role of carer is incompatible with the role of sexual partner. For some it is an impossible combination, particularly if the injured person is unable to show love, empathy and sensitivity as a result of their brain injury.
The partner who lives with someone with whom they are unable to share previously enjoyed activities may feel this more acutely. As well as losing their mate, there can be additional roles and responsibilities – such as running the household alone and, for those with children, a loss of parenting assistance and support. Some people with brain injury may become emotionally immature and very dependent upon their partners. This can result in the spouse being torn between the needs of their partner and the needs of their children.
The children themselves may experience reduced attention from the non-injured parent combined with a loss of affection from their parent with a brain injury. Also, the children can become confused and distressed by unpredictable behaviour and some, like the spouse who has lost their mate, may feel that they have lost the father/mother they knew and loved.
For the partner, personality changes and the loss of affection, together with all the other daily stresses and strains, can sometimes be very difficult to overcome. The important thing is to seek professional advice and support.
Parents of an ABI survivor may re-assume the role of carer. This can be easier said than done. They might become overprotective and feel anxious as their child tries to achieve more independence. Maybe the injured person is no longer a child, a situation that can bring its own particular problems when it comes to the question of independence.
Not all families will experience problems and some will be able to make adjustments without too much difficulty. They may feel closer to their loved one as a result of the recent experiences. Whether this is the case or not, for most people involved the road to recovery and eventual adjustment can be very painful. To differing extents, all members of the family unit will require support to help them cope with the here and now.