I was a full time, lone parent, nursing level carer to my profoundly disabled son, Brendan Bjørn, for nearly 18 years. He passed away 9 months ago, age 17 years and 7 1/2 months. These past 9 months have been a period of collapse for me. Physically, emotionally, and even financially. I saw this diagram on the Freudenberger stages of burnout today while scrolling through Twitter. It’s prompted me to write this blog piece.

My caring role ended 9 months ago, but I am in stage 12 of burnout.

You may ask, how can that be? In fact, I have asked myself that very question this morning.
The following is how it can be…and how it is.

For many years I’ve written about burnout. I asked for more supports. I begged for more respite. I worked advocating for better services. Nearly all of that effort was for naught.

During those years, I highlighted how carer burnout is a very real – and very dangerous – state of being. I pointed out that if a carer is unable to attend to their own needs, they will eventually collapse. In one way, or in all ways, they will collapse.

And so I have done.

It is with the clarity of hindsight that I can now see just how shockingly accurate my previous descriptions of ‘running on fumes’ truly was. It is also with the clarity of hindsight, coupled with the current level of struggles I face, that I can see how spot on my advocacy imploring the government and disability sector for reform was.

Financially: When a long term, full time family carer loses their loved one, they are thrown off of a financial cliff edge. Years and years of the financial supports (social welfare) for the disabled family member and for themselves as a carer come to a stop in the blink of an eye at the death of that beloved person. Keep in mind, some carers have been decades out of the paid work market, now unmarketable in an extremely competitive workforce. And are they even able to work at this point in their life? That leads me to the next section.

Physically: When the caring role ends at the death of the loved one, those all important fumes which sustained the carer no longer exist. There is no more fuel in the reserves of the carer. This is usually when any long-ignored health issues come racing into the life of the now former carer. And how are these pressing medical issues to be resolved quickly when the health system is in crisis and waitlists for consultants are literally years long? Or, if private insurance is an option, how is the now financially broken former carer to pay for everything the private insurance doesn’t cover?

And in a sick twist of irony, how can they work when they are now disabled themselves after years of unwillingly sacrificing their own well-being and health without the proper supports?

Emotionally: Where do I even start? Grief. All consuming grief which only exacerbates the physical medical issues that the former carer now has time to try and resolve. That realisation is a reminder of the great loss which has now provided this bitter freedom to care for one’s self. More grief insues. Wavering between being desperately anxious to become healthy and not being able to pay for the medical costs. Knowing that life can’t continue on in the poor health now so glaringly obvious to the former carer yet feeling the stress of the financial constraints to seek medical care. More stress insues.

It is a vicious cycle in which these three areas spin relentlessly in the life of the now former carer.

To be sure, not every former carer experiences these concerns. Aging, lone-parent, long term, full time carers with little to no family supports are likely the most vulnerable of the carer cohort. It happens to be the cohort I am in, so it is what I write about today.

I have to now wonder what life would be like for me today, 9 months on after losing my precious son, had I not been so devastatingly burned out over the last few years of my caring life. What if the government and related disability sector bodies had provided proper services and supports?

My health concerns could have been seen to far earlier. I could have even continued my career and had an income stream as well as a retirement to look forward to. I could have maintained a social life rather than having been a virtual shut-in these past number of years.

Everything would have been different, not just then, but NOW.
And not just for me, but for my other son.