By JANE QUICK
My mum did not help me buy my wedding dress.
When my daughter was born she couldn’t offer hands-on support. On a bad day I can’t ask her to make me a cup of tea and talk through my problems. As my mum has multiple sclerosis (MS) she has more bad days than I do. People who have healthy, living parents don’t know lucky they are.
She was diagnosed 30 years ago just after I was born. As a kid I knew my mum had MS but was unaware how it affected her. She seemed fine, just like all the other mums, except that she occasionally walked with a cane or got tired and spent a few days in bed. It wasn’t until I was in my last year of high school that her MS started to get worse and I really understood how the disease works and what that meant for my mum’s future.
I will never forget the day I came home and found her on the lounge room floor. She’d been there all day because her legs had stopped working and she couldn’t reach the phone. I called my dad and then I went next door and got help from the neighbours. An ambulance came and my mum went and stayed in hospital for a few weeks. I told my dad that I wouldn’t go back to school ever again unless he promised to make our house safe for my mum. He arranged for a Red Cross panic button to be installed so that if my mum fell again or got stuck she could press it and someone would come and help her. Support services for people with disabilities are limited and it was face of an uncertain future it was the best he could do at the time.
That day was a turning point in my family’s history. Prior to this my mum had had bad episodes and recovered back to full health, but from this point on the changes in her body would become permanent. Within a few short years my mother would require the use of a wheelchair full-time. She was legally blind and needed daily visits from a community nurse to help her shower and make sure she ate lunch. Eventually my parents would sell our family home and move into a house specifically designed and built to accommodate someone in a wheelchair. My mum’s eye sight lasted long enough for her a lifetime trip to the UK, to see where her ancestors had come from, and to see the birth of her first grandchild.
Her MS is now quite advanced and she is totally dependent on other people for her care. Something I’m sure it must have been hard for such a proud lady to come to terms with. My dad is her primary carer. My older sister and I have talked to him about the possibility of mum needing to go into a nursing home at some stage but he says he’s still coping and wants them to stay together in their home as long as possible. Every time my phone rings late at night I think the worst. I used to pray for my mum to get better, now I pray that she doesn’t suffer.