Huntington's Scene In New Zealand
Emotional Support for Carers
by Jane Eales
If you are a regular reader of this section of Carers News, you
will know that Kathy Wood and I are interested in a wide variety of topics - particularly
those which have an emotional impact on carers lives.
One such topic is the thoughts and feelings carers have when thinking about accepting help with their caring, such as respite. Research tells us that over 40% of carers who experience a great deal of strain do not want any more services and over 50% of carers who are caring for a person who needs a lot of help with personal care do not want any or more services. We know there are still a lot of carers who do not feel able to use respite.
Have you ever asked for or accepted respite? If so, can you remeber what you thought when you were deciding whether or not to use respite? Were you, like I was, a little surprised at how difficult it was to accept it?
We recognise that for many carers who now regularly use either in-home or residential respite, it can become an almost routine part of life, a welcome break and something very positive both for you and the person you care for. But how did you reach that stage?
For some carers accepting any help with their caring confronts ones core values and can involve a redefinition of ones self. Instead of being independent, treasuring the privacy of their families and being proud of being a competent carer, some carers feel they they become a recipient of care and a drain on the taxpayer. I also felt this way and disempowered and dependent. Letting go was uncomfortable and to some extent one loses control over the caring.
Toni Paynes research, Coping at Home, also discusses why carers wait so long to ask for services. Carers, in their interviews with her, said they had to overcome their guilt that they were not doing enough for the person they cared for. Carers were concerned about what the rest of the family and the community would think of them. They also saw caring as a family responsibility and found it difficult to lose control over the caring and let others care. Sometimes the needs of the person seem to be such that carers were fearful that they would not be able to trust the workers to provide the quality of care the person needed.
Often they did not know about the range of respite service now available, that respite services can be tailor made to the needs of the carer and the person they care for. Cost was also a factor.
Carers are also concerned to maintain a good relationship with the person they care
for. Respite can sometimes add more strain to the relationship. The attitude of the person
being cared for, to respite, should be discussed and whether they feel betrayed or
abandoned is something to be worked through. This is vital to a carer feeling free to
enjoy the breaks that respite offers. However, as this issue will take up more space than
this article allows for, it will become a topic for a later Carers News article. So
the rest of this article concentrates mostly on the carers thoughts and feelings
about accepting respite.
The more recent research findings about carers has helped me to REFRAME the way I thought about accepting respite services. Anna Howe in 1990 in Victoria surveyed 1000 carers and one of the aims was to try to find out who had the most positive caring experiences. Among the many conclusions she came to, she found that those carers who had positive care giving experience lived in generally more supportive environments and enjoyed support from many different sources, both informal and formal.
It was those carers who shared the care who found caring more satisfying. For some carers, the following must be obvious but for others it may not be. Sharing the caring responsibilities could now be seen as a wise decision.
This reframes the role of the carer. When accepting respite, the carer can move from feeling they are receiving care to being a care manager. Instead of feeling that respite reflects badly on the carer not being able to do everything for the person, the carer can justifiably feel positive about being able to share the care..
Instead of feeling disempowered and dependent, the carer can through their careful guiding and managing the care, regain their feelings of competence and self-esteem. Sharing the care can also recast respite workers and staff as allies to consult with and to discuss issues with.
This is not to deny the important monitoring role that carers have to ensure that the needs of the person they care for are met and the need to do all that is possible to enhance the relationship between the person being cared for and the carer. It is also true that the carers need for respite still has to be demonstrated and argued for.
Respite can also be a very positive experience for the person being cared for. It can also add more variety to their life, social opportunities and opportunities for learning and for being adaptable to different carers and environments. This can help to smooth adjustments necessary in the case of emergency situations when for some reason the carer is unable to care.
Perhaps most importantly for some, respite can make it possible for the person they love to stay at home for as long as the person requires it.
Far from being a drain on the public purse, the community recognises that carers are doing a valuable community service. In many cases, if carers could not care, the person they cared for may well be in some government funded accommodation. So respite is a form of recognition for the valuable community service they do.
If respite is seen this way ( and it seems almost inconceivable now to think of it in any other terms ) it could free the carer to make full use of the break it offers.
If you think you have some insights to offer about how to encourage carers to see respite as a constructive positive choice, we would welcome hearing from you.
Acknowledgement: Carers News (NSW) October 1998
This article taken from Gateway the Newsletter of the
Australian Huntingtons Disease Association (NSW) Inc.
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