Why I do what I do; Why I say what I say

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I put out an advocacy tweet this morning calling for more financial support for family carers as prices for everything from fuel to electricity to groceries to auto insurance are increasing rapidly. Everything BUT the meagre social welfare we receive is going up, that is. And I know I’m not the only carer out there who is beginning to sink financially.

  • The heat goes on less.
  • I don’t drive hardly anywhere when I get the rare chance, despite at times I’m desperate to do so.
  • I sit in a more dimly lit room than I would like.
  • After I get the numerous medical appointments for myself done, I will need to cancel my private health insurance because I simply can’t afford it anymore.
  • And recently, I’ve begun listing various items for sale online.

I hate being on welfare. I was raised to be independent, to work hard and to be self-sufficient. I didn’t put myself through University and then through Graduate School, studying while working full time, for many years just so I could lose everything that I worked so hard to secure, only to become dependent on a system which views me as less-than. It is humiliating and infuriating, in equal measure.

I also hate being a full time carer expected to live on crumbs as if the work I do around the clock isn’t worthy of fair pay…you know, an actual salary, complete with a pension accruing, so that when the day comes that I am no longer a carer, I don’t have to depend any more on the social welfare system. Doesn’t that seem logical? Surely the government doesn’t want to perpetuate poverty and dependency?

In my thoughts today after I made the above tweet, I began really contemplating all that I do, and in that of course comes my son’s numerous conditions. So, I made a list. You’ll see it below. Keep in mind, I do this alone, as a lone parent carer, around the clock. Not only am I sinking financially, but after nearly 18 years, my body is now in chronic pain. Arthritis in my major joints, Rheumatoid Arthritis, Degenerative discs, and most recently diagnosed with Asthma.

But hear me: I do NOT want pity.

What I want is for the powers at be to read this blog, then read below the medical conditions of my beloved son, Brendan Bjorn. Tell me honestly, could any of you do what I do 24/7?
Could you? Would you?

It is way past time that family carers of profoundly disabled children / adult children are treated fairly, equally, and provided with full, proper supports and remuneration.

When that happens, then I will finally be quiet.

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