The Huntington's Scene In  New Zealand

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Graham Taylor

Articles taken from the MARCH   2005  Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

Emotional Support for Carers

 Adam McLean, Counselling Co-ordinator, Carers NSW

 Relinquishing care

“You begin with all this compass/on but as time goes on, my nerves have dried up and I’m on a tight wire, ready to go off at any moment”. A carer speaks of caring for her son. As time goes on she is left wondering how long she can continue, and what alternatives there are. The compassion she began with has eroded and she finds that she is fearful as her own health begins to fail. She can’t afford to get ill. She is getting older, more tired and is exhausted. She is fearful of the future - will she be able to continue doing what she is doing indefinitely? Relinquishing care is not an option as she has committed herself to see the care of her son to the end. Her son has lived longer than expected - a great and wonderful validation of her love and care that she has provided.

 But what happens when the carer is no longer able to continue caring.

 Relinquishing care is not an easy decision for anyone to make and is often absent in discussion with carers. It can mean different things to different people, such as, being judged as a person who is not able to cope, of letting the person you care for down, being selfish and punishing the person you care for.

 The Macquarie Dictionary provides the following meaning of relinquish:

 ‘to renounce or surrender, to give up, put aside or desist from and to let go’

 This concurs with the sense of what carers say about what relinquishing care means to them -‘I am letting the side down and giving up on...’. Also, along with the sense of letting go or giving up, is the aspect of bereavement. Again the Macquarie Dictionary provides some insight to the meaning:

 ‘to deprive ruthlessly especially of hope, joy and to take away [violently], become obsolete’

 Again this aspect of renouncing the person you care for can feel like a psychological attack on the carer, that to consider this seems almost violent and the carer is left feeling obsolete – no longer in use, being discarded.

 Who wants to put themselves through this myriad of emotions. One carer describes it as being like a “roller coaster and you can’t get off unless you hold on tight and pull the breaks” and often the outcome is to stay with it and not let it enter your mind – “it feels too awful to consider as I would never forgive myself”. For carers making that decision is extremely difficult and more often very painful and agonizing.

 “Often the decision is made under very difficult circumstances  and at a time when the carer is exhausted and stressed”


For those who do make the decision, it seems as though they have been judged. This of course can happen on a smaller scale in that the carer can feel that using respite whilst being very welcome and needed, is in itself a form of relinquishing care.

 There is no easy solution to reaching a decision in this difficult task. It is extremely personal and intimate. One of the areas that a carer can think about is the meaning that is attached to the thoughts of what relinquishing care means. One of the helpful ways I use when working with really difficult decisions is using journaling techniques and especially mind-mapping, this is also known as clustering. It’s a way of brainstorming ideas and generating solutions and ideas to problem situations.

 Start by placing a word in the centre of a page. This can be any word: an emotion, person, place or event. You can choose the word relinquish or another one that is sitting with you at the moment. Put a circle around it. Then think of whatever word comes to mind when you think of this first word. Put a circle around this word and connect the two words. Continue this process until you come to a natural end. Return to the word in the centre and repeat the process.

 Do this as many times as you need until you can’t think of any more ideas. Instead of going back to the word in the middle, you may want to start a chain from another word that you have described. What do you see? You may well notice that words are repeated and form chains. Repeated words and/or similar words can indicate themes and patterns that are happening in your life. These words can alert you to action you need to take or decisions you need to make.

 Often when there is a difficult decision to make, is usually when we become flooded with strong emotions that stop us from exploring and making the decision. In bringing some of the hard decisions out in the open, more often than not the process begins. You can apply this simple tool to a lot of your decision making not just to the really hard ones.

 Acknowledgement:     “Carers News”’ the newsletter of Carers NSW, Inc, August 2004

Acknowledgement:                 Gateway – Australian Huntington’s Disease Association (NSW) Inc

Volume 7 No 6 – November/December 2004