Today we got the bad news that mum’s condition is worsening. She can no longer speak and probably won’t ever be able to again. Hearing that news sent a dagger straight through my heart. You’d think that I would be used to getting bad news after all this time. I mean, since her diagnosis, we’ve rarely received anything other than bad news. It’s been pretty much hopeless since the day we were told she would never recover from this deadly disease that was eating away at her brain. It sounds horrible, doesn’t it? That’s because it is.
The only good thing to happen in the last ten years was when we finally got my mum the help of the many services offered by an NDIS provider. She needed the help of the NDIS so badly. It was hard for us to get her that help because dad wanted to look after her himself. He did a good job for a few years, but it was eating away at him. Looking after her aged him ten years in about two. At the age of twenty, I was worried that if I didn’t say something to my dad about putting her in care, then I’d lose both of them. That’s an incredibly difficult conversation to have with someone you love, about someone you love. This whole experience has aged me too.
When we were able to find a positive behaviour support provider in Adelaide, it was like a wave of stress was lifted off of both our shoulders. Although it was absolutely devastating, it was something that both dad and I needed to do in order to progress our lives. I was twenty and spent every moment of every day worrying about both my parents, for different reasons. It was taxing and a real drain on my life. I’m not saying that my mum was a burden because she definitely wasn’t, but her disease was a lot to handle for one husband and his daughter.