Until there's a cure ... there's care

Brett was a good looking man who dressed immaculately in full business man’s attire of suits, cufflinks and great ties. Approaching 40 he was in the prime of his life doing a job he absolutely loved. He was fit, active, played soccer for Brighton Football Club and enjoyed spending time with me and our daughter Anneka. He loved life and lived it to the full.

It was in June or July 2014 that he first started getting symptoms but he put that down to having spent several weeks in India working very long hours to finalise a project. He’d noticed that it was difficult to pick up a pen and write but as he did most of his work on the keyboard this didn’t bother him too much. Shortly after he came back from India he and some of his mates went to Las Vegas. Looking back I’m really glad he did that as by September it was obvious he wasn’t doing very well.

Brett was still playing soccer but he would get very tired and he was having more and more difficulties with his left hand, arm – really his whole left side. We went to our local neurologist who immediately referred him to the Austin Hospital. He underwent a number of tests and was diagnosed in the November. I guess we were fortunate that he was diagnosed so quickly as I’ve heard it can take months to be diagnosed. On the other hand – it’s never fortunate to be diagnosed with MND because once diagnosed you know the inevitable end. It was November 2014 when we were thrust into the MND world. Our neurologist told us then that as Brett’s disease was progressing very fast his life expectancy was about nine months.

Thank goodness Brett was a fast decision maker and great organiser. He quickly contacted MND Victoria and a week after his diagnosis we attended one of their Information Sessions for people newly diagnosed. I cried through the whole session. The information was confronting but it was delivered in a really caring, honest and realistic way.

We were allocated a Regional Advisor, Liz, who met with us. She was amazing, always available with advice or just to listen. She and Brett seemed to connect straight away – I think he really appreciated that she told us the reality of our situation because she understood him and knew that he would cope better with knowing the truth. A couple of months later I took Brett’s mother Diane and my mother to an Information Session so that they too could really understand what was likely to happen.

Dad, Mum and daughter
Brett, Elizabeth and Anneka

Soon after his diagnosis both Brett and Anneka were vying for my attention and I just turned to Brett and said “Brett we have no good outcome with this MND, we know that you are dying and I don’t know how I can help or what I can do but I will do whatever I can”. I then turned to Anneka and said “Anneka I know you are feeling left out and not having enough attention but we have to work this out between us as this is our reality. We have to work as a team”. It’s not like me to be that forthright but I was feeling overwhelmed and anyway I think Brett understood that we were both on an uncertain path and had a lot to deal with.

In December while he was still pretty mobile, we had the best family vacation in Fiji. Thanks to Liz, Brett took his crutches with him and this helped, although walking any distance was difficult. It was during this time that he had to ask me to help him pull up his pants and the reality of the disease and its rapid progression really sunk in for both of us. Brett was losing control over his own personal care and he hated this.

Brett was a New Zealander and his parents still lived there. Fortunately Diane, his mother, put her life on hold and moved to Australia in February 2015 to help look after him. Looking after Brett was hard work both physically and emotionally and I certainly could not have done it without the help of Diane, MND Victoria and of course my family who looked after Anneka almost every weekend. Thanks to MND Victoria we soon had a variety of aids and equipment to help us through the day. Liz was amazing, she would organise for equipment to be delivered before we even realised we needed it. Throughout his short journey with MND, the Association provided us with a hoist to safely transfer him, shower commode, an electric riser chair, a manual wheel chair, an electric power wheelchair, the list goes on, and all of this was loaned, delivered and maintained at no cost to us at all. If we hadn’t had these aids it would have been impossible for Brett to have remained at home and, like most people with MND, home was where Brett wanted to be. He even wanted to die at home and we discussed this a fair bit, particularly how it would impact on Anneka. We hadn’t really reached a resolution but fortunately the decision was taken away from us as Brett died while he was in Caritas Christi for respite.

Not long before Brett went to Carritas Christi he asked me “do you want me to die?” My reply was immediate – I told him “no, no I don’t want you to die, I would do anything for this not to be happening, but we are dealing with MND right now and there is nothing we can do to the change the outcome, I’m just struggling to keep going”.

Brett died a little over nine months after he was diagnosed. During those months we were able to create some lovely memories for myself and Anneka. Brett and his mum grew very close too. While he was still able to talk Brett told me that after he died I was to ”go find love, do not shut yourself off, let people in”. It was just like him to offer this type of advice. He also said “I’ve lived life to the fullest, there is probably nothing more on the bucket list”.

If someone had told me it was going to happen and I would be a carer I would have told them I don’t want it, but it was thrust upon us and we just had to get on with it. Every day we had to “live in the moment”. You sometimes feel you could have said or done things differently but you are human and in the end I’m happy and glad that I did what I did for him. Our life together has been a beautiful experience for all of us even though, like most families, we had our ups and downs. I’m just so glad we had him for so long.

It’s been a stressful, difficult and hard journey – I had to be a wife, carer and mother to Anneka. I could not have done it without the help of many people but it was MND Victoria that gave us the ability to care for Brett in the way he wanted – at home, with dignity and love.

Please give generously because every day over 400 Victorians and their families are going through the same difficulties as we did and they rely on MND Victoria to deliver the care, support, aids and equipment they need to stay living at home.

>> Please donate online now <<

This story was originally published in our 2016 Tax Appeal

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