My beautiful son, Robert, Robbie to all who know him, was just 34 years old when he was diagnosed with Motor Neurone Disease, or MND, 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 me.
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?
This was not without its struggles. Robbie had to come to terms with the amount of invasive care that he would receive from us as his full-time carers. A total loss of dignity for a person, regardless of age, but especially for such a previously active and independent young person, so we all had to adjust on the run with this insidious disease.
One of the biggest helps to us all has been MND Victoria, who are the only organisation delivering care and support to people living with MND. The organisation’s motto is ‘Until there’s a cure, there’s care’ and they provided information and helped us connect with services and particularly as the disease progressed; they provided Robbie with amazing equipment that really changed our lives.
Robbie was first given a regular wheelchair and then a power wheelchair, an over table for bed, a trolley table, an electric lift, strap lifter and a high back chair used for the dinner table. MND Victoria has also provided Robbie with other equipment that helps in the shower and with toileting, a walking frame on wheels and pressure pillows for his wheelchair. This has made all the difference to Robbie still being able to live at home independently, enjoy time with our family and our friends and to still be connected in the community, all at no cost to us.
Our family have an around the clock roster, with Michelle looking after his medications and painkillers and me feeding Robbie by hand. Continuous sleep is non-existent for us all, as Robbie’s ringer could go off at any time when he needs help with toileting or just to scratch an itch, as 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. We also try to meet his emotional needs as dark depression is a reality with MND.
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 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.
Despite all of the frustrations and sadness, none of us would pass up on the opportunity to see our son and brother through the biggest fight of his life.
I will again head up ‘Team Robbie’ to help give back as much as we can to MND Victoria, who have supported our family all the way on this difficult journey.