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

Two family members helping man in wheelchairBy John Caliste

This is one job I never thought I would sign up for. I'd like to think that I'm a caring person but the idea of being a carer for one of my children never existed. I was lucky, if you can call it lucky, that of both my parents passed quickly.

This all changed when the dreaded acronym MND entered my family's world.

My beautiful son Robert, Robbie to all who know him, was diagnosed in May 2017 and our world hasn't been the same.

At the start, life wasn't too bad as Robbie was fiercely independent and living his own life in the house he shared with his friends. The understanding was that when he felt the time was right, he would come home to us, to what we called the Caliste bubble made up of his brother Paul, his mum Michelle and myself. His only need was, at that time, his monthly visit to Calvary Health Care, Bethlehem.

However, as the disease progressed, and he started losing some functions and had many falls, Robbie came home and full time caring became a reality and a labour of love. Who wouldn't do the same for their children?

Before I proceed to the role of the carer of a person suffering MND, I must mention MND Victoria who provide the utmost amount of support with equipment and administrative needs. Their motto of "until there's cure, there's care" is so true.

Father and sonWhen Robbie moved home he struggled with the whole situation. He couldn't come to terms with the amount of invasive care that he would receive from us. Be it wiping his backside or cleaning his private parts. Total loss of dignity for a person, regardless of age, but especially for a previously active and independent young person.

Our role now is to ensure that he receives his medications and painkillers at the right time and as required. And his emotional needs are met as dark depression is a reality with this disease. He has a ringer to summon us when needed, which could be for a toilet need or something  as simple as an itch that needs scratching because he has limited use of his limbs and fingers. Getting him out of bed is no easy task with an almost dead weight. I don't know how Michelle manages this if, for some reason, I'm not around. He also suffers from the most incredible cramps which reduces me to tears due to my inability to help him.

This is around the clock and we have a roster. His mum looks after meds and I feed him by hand. Continuous sleep is non existent for us as that ringer will go off at any time. His brother Paul has been fantastic and, with his help, Michelle and I have been able to enjoy the odd night out. Not too many though as you are always on edge in case you get a phone call.

There are so many more aspects of this insidious disease that I could mention, but even putting them into words is hard as you are adjusting on the run. The emotional toll on all of us is indescribable.

Having said all this, in spite of all the frustrations and sadness, we would not pass up on the opportunity to see our son through the biggest fight of his life.

Melbourne Victory have teamed up with Robbie for his last night watching his beloved team play, watch Robbie's MND Story and donate.

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