Huntington's Scene In New Zealand
Carers NSW in partnership with other organisations has now run many telegroup
coun-selling programs (TGCs) with different carer groups over the past 2 years. We
are currently working with the Brain Injury Association and running a group for parent and
spouse carers of a family member with an acquired brain injury.
The interest in participating in this TGC has been overwhelming!! There is very little
Feeling emotionally and socially isolated stands out as a significant area of concern experienced by all participants. One of the difficult aspects in their caring is that often the behaviours of their family member are misunderstood by others not familiar with the effects of that particular brain injury. Carers frequently feel a mixture of being judged and hurt whilst also feeling protective. Not only do friends and even family often with-draw but carers themselves begin to avoid main-taining social contact because of the hurt they have experienced over time. Their emotional and physical energy is usually strained making them all the more vulnerable to feeling judged and less able to put in the increased effort often required in addressing the prejudices of people around them. Carers in this TGC acknowledge their own contri-bution to feeling isolated through sometimes choosing to avoid social contact and expression of their feelings if it means not facing continued hurt and misunderstanding. All of them recognise the danger of this but for some the opportunity to address this has come about primarily through talking to others in the telegroup who understand and do not judge as they have experienced some-thing similar themselves. To hear this under-standing from others who are also willing to share something of their own experience allows carers to consider different ways of dealing with their concerns around isolation. For instance some participants seek out those friends who can empathise without needing to offer solutions. Others have reached rock bottom before they have given themselves permission to start consid-ering their own emotional needs. Still others store many of their feelings in a box and only when it overflows do they allow themselves to talk about how they feel with a trusted person. As one carer commented there is no single answer. Rather the consequence of talking with one another creates a larger pool of ideas from which each carer can choose how they might wish to address the problem.
The other issue that emerges as a particular concern to family carers of a person with an acquired brain injury is just that....... it is acquired and it has happened suddenly. All the carers in this group have had to struggle with coming to terms with being in a relationship with someone who is different to the person they married or the son/ daughter they helped rear to adulthood. Some have gone from a relationship of partner-ship and intimacy to a parent like relationship. Still others have eventually evolved from a marriage relationship into more a sibling relation-ship. Roles have changed and whilst there is affection, feelings have also changed. All the carers comment on the enormous, guilt they have experienced and how rarely, if ever, they have felt able to talk about this. The relief in hearing others with similar reactions and feelings is enormous and once again goes some way towards reducing the immobilising feelings of guilt arising from their changed feelings in that relationship.
Carers comment on experiencing a double grief -grief for their family member and the quality of life they have lost as well as grief for themselves and what has been lost from their own lives. For them the challenge is developing a new relation-ship with their family member and therein lies the paradox. In order to keep caring, participants comment that they need to hold in their hearts the affection they felt for the person before their brain injury. On the other hand they also feel they have had to start again by accepting the marked differ-ence in that person (often there have been huge changes in personality, capacity for insight, and development of impulsive and socially inappro-priate behaviours) and reconstructing another relationship around that.
For many the pain in reaching this point has been a very isolating one. To connect with other carerswho can understand and share in this is enor-mously important. Carers NSW is very aware that the way carers choose to do this is individual and varied. We need to respect this and ensure that opportunities for emotional support in struggling with the range of issues that arise in caregiving are made available to carers in a variety of ways. The use of telephone groups is just one way - but it remains a particularly effective and easy way of beginning the process of developing links among carers.
Acknowledgement: Carers News (NSW)