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He weighs 48 kilos & is 156 cm tall. He& #39;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& #39;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& #39;m not a hero. He& #39;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& #39;s never an uninterrupted sleep. The local respite centre can& #39;t accommodate his needs. 3/
That is, even if COVID19 wasn& #39;t a factor. In home nursing was finally approved for 4 or 5 hours per week, but with Loco Parentis, I wouldn& #39;t be allowed to leave the home. That& #39;s no respite, especially considering if he needed repositioned or changed I& #39;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& #39;s done for the foreseeable future. I& #39;m rambling here into an echo chamber, I& #39;m aware of that. 5/
I do so because I& #39;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& #39;t deserve pay, pension, time off, supports or improved services to help us with the vital work we do. Why not? 6/
I couldn& #39;t count how many times I& #39;ve had doctors & nurses alike in hospital tell me they couldn& #39;t do what I do. They meant it, too. It wasn& #39;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& #39;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.
