Emotional Support for Carers.

by Adam McLean Counselling Co-ordinator. Carers NSW
Caring and Acceptance

Caring for someone who is chronically ill brings challenge to the relationship between carer, the person being cared for, immediate family members and the extended family. When an illness or disability enters the relationship, then change is imminent. What change has occurred for you, your family and your life? What have you required to come to terms with in making change happen? What has been your greatest challenge? The answer, given during a discussion on change, by a carer who cares for her son with a mental illness, was Acceptance.

She spoke of having to learn to accept that she couldn't bring the past back and that she couldn't move forward until she accepted what was happening to her son. "For change to really happen then acceptance must happen first otherwise you get stuck and you can't move forward".

Understandably she spoke of how she blamed herself, the people her son mixed with, family, doctors, and so on, for not supporting and helping her son. It was quite some time before she realised that she couldn't undo what was happening with her son and that she couldn't go on blaming others. She believes it was at this point she began her process of acceptance. In understanding her own reluctance to accept that this was happening to her son, it gave her the freedom and the courage, she believed, to deal with the relationship with her son and his mental illness.

 This discussion reminded me of a book that I read recently that described acceptance as needing to happen in three ways:

v      Firstly, acceptance that there has been an illness or disability which, by it's very nature, operates as an agent of change. There is a sense of alienation or disconnection from others including family, the person being cared for, community services, health professionals and so on. The carer is left with feelings of loneliness, anger, distress and possibly shame and guilt. The presence of such feelings could make continuing relationships with the person being cared for extremely difficult.

v      Secondly, that acceptance of the long-term nature of the change in the relative must be acknowledged, along with an understanding that the person is likely to continue to need long-term support.

v      Lastly, there needs to be an acceptance of the person who has emerged from that process of change that involves the renegotiation of the relationship. This is an ongoing process as the illness or disability changes (Jones 2002).

What is clear from the suggested three phases of acceptance is that for anything to happen, dialogue or communication in the form of a discussion needs to happen. It is important that the dialogue is meaningful, can be shared with family and openly expressed without judgement, disapproval, or blame. Often it is this obvious and often overlooked ideal that is taken for granted. Talk of acceptance, however, must be qualified in that it is not necessarily a happy acceptance, but more often a painful resignation and an accommodation of coming to terms with the illness or disability and its effects on the person. This aspect alone is one of the major barriers to effective and open dialogue. For many carers, in accepting the long-term nature of the illness or disability they are also, perhaps, painfully giving up a measure of hope.

 Carers need to be involved in conversation with others in order to work out liveable and meaningful solutions (Jones 2002). What is important to acknowledge is the complex loss that is central and a common experience of carers. This can be further complicated by the presence of strong emotions, making communication about how you feel very difficult. Talking it over may seem an easy solution, but when did you last take the risk?  

 Reference:
Jones D. W (2002) Myths, Madness and the Family -the impact of mental illness on families. Palgrave, Hampshire & NY.

 Acknowledgement:
"Carers News", the newsletter of Carers NSW Inc. November 2002.

 Gateway January/February 2003