I am a mother to two sons.
I am a nursing-level carer 24/7 to one son.
I am solely a mother to the other son.

For 17 years, I have been working around the clock – literally – to keep my son alive: to medically rescue him when he stops breathing in a seizure; to clear his airway when he’s choking; to carry out deep wound care; to monitor his vital signs daily; to watch emergency services…more times than I can count…rush in the room, bag him, take him away in the ambulance with lights and sirens on; to administer life saving medications multiple times a day, every day, for 17 years. And so much more.

I’ve said good bye to my son more than once as doctors told me he may not make it through the current illness or infection. I’ve signed DNRs and most recently, signed an advance directive so that all of the past 17 years of emergency interventions will no longer happen as his very fragile, beautiful but failing body continues to decline in health.

After 17 years of this high intensity, nursing-level caring, I am, without a shadow of a doubt, burnt out.

Last night I lay in bed thinking about the past 17 years, and indeed of the future. I thought of how it’s been so far and how I would dream of it being some day. Can dreams become reality, even after the past 17 years? Am I even allowed to dream? I don’t know.

I thought of how tired I am, which led me to wonder how many days/nights off of caring work I’ve actually had in 17 years. I added it up. The fact that it wasn’t that hard to figure out says much.

The first 10 years of Brendan Bjorn’s life, I had a total of 4 days off of caring duties…AND I SPENT ALL 4 IN HOSPITAL AFTER SURGERY.

Can you imagine working a job where you must be on constant high alert, around the clock, on call, ready to jump up and save a life, without any time off for 10 years? Seriously think about that: there are no weekends off, no holidays or vacations or bank holidays or such. Nothing. You are working or at least on call (ie: at night when trying to sleep) the entire time. Could you do it? (And note: this is part of the reason so many carers struggle with anxiety and depression.)

More numbers: in 17 years, I’ve had a total of 77 days off so far. 17 of those were while I was either in hospital or too sick to care for Brendan Bjorn so he got respite care.

That means I’ve had just 60 days/nights off of non-health related respite in 17 years.
LET THAT SINK IN.

That’s 3 + 1/2 days off of 24/7 nursing-level work a year. Work which has grown increasingly more and more complex and difficult as the years pass, mind you, unlike being a parent where a child grows more and more self-sufficient and independent. Being a carer as I am is not the same thing as being solely a parent. Not by a long shot.

I want to quit this job. I dread the work now most days. I’m bored, frustrated, exhausted, suffocating, feeling caged and as if my life has passed me by to a great extent the past 17 years. But, dear reader, do you know what? None of the above would ever have to be said or felt or occur if our societies and governments rallied around families like mine, around children/adults like Brendan Bjorn, so that we each could live the fullest life possible.

Think full nursing supports for a carer to continue with their professional career if that’s what they choose (oh, and that would add to the tax base for the society for those thinking fiscally). Think 2 weeks of overnight respite every month for children like Brendan Bjorn so that parent carers working 24/7 don’t get to the point I’m at and could continue caring work without collapsing. Think residential living communities which could medically, socially and holistically provide safe, loving homes for children like Brendan Bjorn as they enter adulthood and as the aging parent(s) no longer are able to, or frankly want to, provide the 24/7 intensive care.

This is what we as a society should be doing. Why aren’t we?

Maybe if politicians only got 3 + 1/2 days off of work per year, as I have, things would change.