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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Chronicles of Kylie: My thoughts on Assisted Dying Legislation

Some of you may be aware or have been following the forthcoming voluntary assisted dying legislation, which is scheduled to be introduced to the Victorian parliament as soon as next month. I thought it would be timely to devote some discussion to the issue which people often feel unconformable about discussing, that of death and the dying process. In writing my own personal opinion and thoughts it is not my intention to disrespect those members of our community who do not support this legislation but rather to provide support for a legislative mechanism that gives us all options and choices. I must confess I really never considered this process before I witnessed my father live through the later stages of Huntington’s disease.

My father was a proud vibrant pilot that served in the Air Force for over 20 years. The Iroquois – chopper pilot – who received the Queens Commendation for his work evacuating people from the devastated areas left by Cyclone Tracey in Darwin and travelled to many troubled hot spots around the world where he was sent to bring military personnel and supplies safely in and out of. I have wonderful memories of the sometimes mischievous Wing Commander, who would call his children’s high school if he was flying past and being able to fly on interstate military transport, usually a chopper, to join him on whatever base that he was currently posted to, for the school holidays…that was pretty cool!  My father remained fiercely independent when he became symptomatic and lived a quality of life that was defined by dignity and his choice and control over the decisions he made. 

When my father needed full time care he was moved at a young age into a nursing home which was a shock to him and us. He continued to deteriorate at a painfully slow pace, each day feeling more discomfort and experiencing further embarrassment as he became completely dependent on others for his every need. In practical terms my father’s loss of independence meant he couldn’t do things we all take for granted like go for a drive, wash and toilet yourself, enjoy hobbies like surfing, eat and drink whatever you like…his favourite food prawns or drink beer or champagne… he couldn’t take his wife out to celebrate their anniversary…or take his granddaughter to a café for a catch-up.

My father was the youngest person living at the nursing home by about 20 years there was up to a 40-year age gap to the majority of senior citizens who lived there. This was not the retirement my father had planned. What both my father and I found extremely difficult to cope with was not his physical deterioration but rather that his mind remained intact and seemed to be trapped inside this shell of a body. For me all I can remember are these frightened eyes that looked out at me from this frail young man and me feeling guilty not knowing how to lessen his suffering. My father could not voice or express his own viewpoints. He tried to take his life a few times in an attempt to end his suffering, but was unsuccessful in his attempts.

When I received my gene positive result my partner, family and I made the decision not to inform my father as it would only add to his suffering. They understand how hard it was for me to see my father in this state, knowing that this could potentially also be my fate.

At this point in my life I firmly believe life is for the living and should be celebrated. Unlike my father I am fortunate enough to be living in a time of great advances in research which means I can now live with HD and delay the onset or severity of the symptoms. However I believe that as we have choice and control over our own health care plans and life management issues we should also be provided with the same choice and control over our own death and dying process. This is why I support the adoption of the Assisted Dying Legislation.

If you wish to share your opinion on this matter or if this blog post has raised any concerns for you please call the staff at Huntington's Victoria on (03) 9818 6333 or email them via this link

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