Sue: My husband needed choice at the end of his life.

My husband Malcolm needed choice at the end of his life.

My husband Malcolm was diagnosed with motor neurone disease in July 2008. He died 12 months’ later, aged 63.


In a split second, all our plans were gone; we had just sold our farm and retired to Haumoana.


From the start, Malcolm was clear he didn’t want any intervention. He didn’t want to prolong the inevitable; he was adamant about that. He had watched his sisters die unpleasant deaths from cancer and knew he didn’t want to suffer the same fate as he died.


The progress of his disease was very rapid. He went from a fit person, stumbling along by himself with a few falls, to crutches, walker, mobility scooter, wheelchair, electric wheelchair, hoists to a hospital bed. He insisted on being up and dressed each day; he was very stubborn like that. The whole thing was soul destroying. Motor neurone disease leaves you constantly running to keep up with it. 


Even though he could no longer speak, Malcolm told me via an alphabet board that he wanted out, if only he had had the choice. By the end he could not eat, drink, walk or talk. He was having constant panic attacks. Everything had to be done for him. It was not how he wanted it to be. 


Malcolm was always fit and active. His passion was rallying. He drove his final rally two months’ before his diagnosis and still managed 10th place.


To not have a choice on how your life ends when it gets unbearable is not right.


It is time for change and I will definitely be voting YES in the End of Life Choice referendum, in memory of my wonderful husband Malcolm. I ask you to do the same and save so much pain and suffering for others in our position.