This morning, 4 December 2021, I woke to find Brendan Bjorn had vomited overnight. You see, if you haven’t been following this blog before now, his gastrointestinal system continues to decline. His body grows more frail as his difficult journey finds him now with an Advance Directive to guide his care.

Anyway, not only did I find one side of his neck, shoulder and back covered in vomit, but his face was speckled with patches of petechiae (where the blood vessels under the skin break due to physically straining). The likely scenario is that he was gagging; choking on his vomit.

I was asleep.
I didn’t hear him.
He was alone in his apparent, likely, struggle.

Today I will spend my day monitoring his O2 sats considering the possible aspiration overnight, in addition to his daily complex, nursing-level care needs.

The thing is: I’m not a nurse on schedule with an 8 or 12-hour work shift. I am his mother / carer who must also sleep at night. And so, nights like last night grow more and more common as his health grows more and more fragile.

I fear that one morning I will wake to find he didn’t clear his airway and he will be gone.

Can you imagine that fear? That worry? And even that guilt that resides within me every single day as I feel like I am not – and cannot be – all that he needs? I try to be. God knows how I try to be.

I’ve decided that starting on 1 January 2022, I will begin an awareness campaign on social media to highlight the Real and Raw aspects of being a Carer to a profoundly disabled young adult. It won’t always be pretty, and indeed it isn’t meant to be. I hope to shock some people (public and government) into the realisation of just how complex, difficult, and even ugly (ie: not so pretty) this very high level of care is, especially for a lone parent, aging carer with their own health issues.

So, on Twitter look out for the #RawAndRealCaring hashtag and feel free to follow me at @addressinglife on Twitter and the Profound Ireland advocacy community at @ProfoundIreland starting on New Years Day. Those with the political power to reform the disability and caring sectors of our society must begin to understand exactly how much needs to be changed. Our profoundly disabled loved ones deserve full, proper, equal supports and services. They deserve to have the right to their human rights be met just as anyone else in our society…but they are not. Nor are those of their family carers.

It’s time to change that.