He weighs 48 kilos & is 156 cm tall. He's on PEG formula 20hrs per day, then fluid for 3hrs, then back on formula. Epilepsy, hip dysplasia, osteoporosis, severe quad. cerebral palsy, spinal fusion, pressure sores, reflux, non-verbal, doubly incontinent, and more. Meds 4xday.

He is so fragile, he can only be in his wheelchair up to 3 hours a day. He's in bed otherwise. I sit here next to him as he watches the light toy change colours. I watch for seizures today while venting his PEG to help with the ongoing GI issues that are worsening. 2/

I do this alone as a single parent. I'm not a hero. He's my hero, to be clear. I get about 7 hrs of rest in my bed per night, always interrupted; on average twice a night. It's never an uninterrupted sleep. The local respite centre can't accommodate his needs. 3/

That is, even if COVID19 wasn't a factor. In home nursing was finally approved for 4 or 5 hours per week, but with Loco Parentis, I wouldn't be allowed to leave the home. That's no respite, especially considering if he needed repositioned or changed I'd have to help the nurse. 4/

So, this is it. COVID19 has magnified the challenges of being a lone parent carer in that the only break I did have was when he was well enough to go to school. Now that's done for the foreseeable future. I'm rambling here into an echo chamber, I'm aware of that. 5/

I do so because I've had it with politicians and yes, even the general public, thinking that carers like me, who provide nursing-level care around the clock, don't deserve pay, pension, time off, supports or improved services to help us with the vital work we do. Why not? 6/

I couldn't count how many times I've had doctors & nurses alike in hospital tell me they couldn't do what I do. They meant it, too. It wasn't platitudes like what the Govt gives. Those doctors & nurses understand the work done, the toll it is taking. The price being paid. 7/

Eyes need to open on this issue & not just 1 week a year for Carers Week. I'll tell you all this: Unless the public begins to advocate for change on our behalf, that change is going to cost lives over time. Where is the public? See the work being done & the rights being violated.