Sandra's story
“I’m sorry to report that it seems you are displaying symptoms of the disease called motor neurone disease.”
My wife Sandra's life (and mine and our kids') began to whirl.
Sandra and I met when I accepted a transfer to a local bank branch in Perth. We started to date when I left to complete my university studies. The relationship developed which lead four years later with both of us saying “I do”.
Five years further on (1990), we had our first born-Louise, and two years after that-our son Ben made up our family unit.
We moved to the Perth hills and raised our family in wonderful environment, with Sandra involving herself into various community volunteer/school roles during this time. In 2000, Sandra was nominated for her community efforts and lucky to be selected to run with the Olympic torch as it passed thru Perth on the way to the 2000 Olympics in Sydney.
In 2009, Sandra was diagnosed with (early stage) breast cancer, and had a small operation and subsequent radiation treatment. Fortunately Sandra received the all-clear, unlike her older sister who unfortunately lost her battle in 2012 to cancer.
In 2010 Sandra and I celebrated our 25th wedding anniversary, in Broome and Horizontal Falls.
Our children were now young adults, and we began to firm up about “living our dream” and moving to Melbourne.
And at the end of 2011, we resigned our jobs and drove to Melbourne.
Melbourne was everything and more. We both picked up full time work, attended most of the major sporting events, theatre and toured local/regional Victorian events. We climbed Mount Martha, Mt Macedon and the You Yangs, cycled to the city for breakfast, swam at most Victorian beaches.
Our daughter joined us in Melbourne (2013) having completed her dramatic arts degree in Perth – and life was good.
And then later in 2013, following months of tests, we received the initial diagnosis from a local neurologist that Sandra had motor neurone disease – MND.
Following a second opinion from a MND neurologist, Sandra and I escaped Wilsons Promontory National Park and tried to regroup. Should we sell, move back to Perth, cash everything in and live on the QE2 until our money runs out, or say nothing and ignore it. Eventually the coin toss said that we should move back to Perth to be with loved ones.
By March 2014, we had auctioned our Melbourne house, resigned from our jobs and packed for the fifth time in two and bit years.
Sandra was very pragmatic. The disease began to affect the functioning of her limbs and within six months she was wheelchair dependent.
Sandra did not wish to die suffering and begun investigating options of having control with managing her disease and deciding when she would like to say "enough is enough". Unfortunately, at the time, the only legal option was accessing overseas options. Upon further investigation it was found that these options were both cost prohibitive and felt a bit back doorish, with limited support when it came to making the call.
As Sandra’s disease progressed further, the use of her limbs became more pronounced. As we worked through her bucket list (balloon rides, the Indian Pacific train between the east and west coast of Australia, concerts and the like), more and more support was called upon such as electric wheelchairs, stair chairs, help to load equipment in/out of cars, more testing, changes to diet and cooking due to changes in swallowing and bathing and toilet routines.
As time progressed, so did the disease. Sandra’s weight dropped 40 kgs, her diet was now narrowed to particular foods, she was unable to enjoy a wine, and conversation became harder. A breathing machine was introduced night, along with Kermode, a hoist, an adjustable bed, special showering attachments, different lounge chairs, carers, and a lot more. Breathing became more difficult, and the only functioning limb, the left arm, was at 30 per cent capacity.
Sandra’s body parts would continue to deteriorate. Towards the end, I would roll her every few hours to ensure pressure sores would not develop. Her children became more and more distressed at seeing her, and Sandra’s mother who had lost another daughter (to cancer two years earlier) was relieving the nightmare again. Eventually, Sandra stopped breathing and passed away, but not the way she wanted it.
Sandra had a terminal disease. Her wish from the beginning was that when she no longer had the will to fight she could choose the time and do it with dignity, being able to say goodbye and surrounded by the people that meant the most to her.
Having the right to go gently and legally is something that should be available to anyone that wishes to consider it a preferred option for them.
Peter Cocks, March 2019