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Issue 90, September 2005

In Awe of Carers

I am a Community Mental Health Nurse working in the Bay of Plenty area. I work with two families who have a family member with a diagnosis of Huntington’s.

I felt the need to write and contribute to Huntington’s News, as since starting my role over two years ago, I have been privileged to work alongside these families in supporting the individual with Huntington’s.

Initially, my knowledge about Huntington’s disease was limited and I felt quite apprehensive about working with the families and how I would be able to support them. The journey we have travelled together over the last two years has been inspiring. What has struck me the most is the sense of hope and courage that these families possess.

Practising as a nurse in today’s society means having to keep abreast with research, and, accessing journals. I am very aware of the stress associated with the diagnosis of Huntington’s and the impact upon carers. What has saddened me, however, is that available literature concerning carers mostly reports the negativity and burden associated with this role. Whilst stress has certainly featured highly in my encounters with the two families, I would also like to highlight the skill, dedication and positivity that carers possess.

I work a set week with a set number of hours to each working day. I can leave the workplace after a hectic day and recharge my batteries and return refreshed. A carer quite often faces 24 hours a day, seven days a week, week in and week out.

The carers I am working with undertake this role with determination. They constantly strive to find new activities and share their successes and failures with me. They work hard to maintain the family, often with little thanks. They nurture friendships both old and new. They fight to maintain the identity of the person with Huntington’s and do an exceptional job. Therefore, I would like to take this opportunity to thank these carers for their dedication and expertise, which they bring to the role of caring and for providing me with greater knowledge and experience in caring for a person with Huntington’s.

Nicky Davies-Kelly BSc(Hons)
Community Case Manager
Specialist Mental Health Service for Older People

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