I wake most mornings lately with my hands shaking. This morning, I woke to the 6:30am alarm amidst a nightmare. You know, the kind where it takes a minute to wake up enough to realise it isn’t real.

I wake most mornings still tired, back aching, shoulder hurting, and as of late, coughing (thanks a lot, newly-diagnosed asthma).

I wake wondering how I will find my eldest son, Brendan Bjorn. Will he have vomited in the middle of the night again and I didn’t hear him? Will he have petechiae covering his face from fighting to clear his own airway again? Will he be alive?

Yes, I wonder that last question every morning. Can you imagine how that feels?

I ask myself daily what more can I do to help him. Am I doing enough? What can I do better? What else can I do?

I ask myself a lot of questions, and as the last few years have passed and things have only become harder, I ask even more questions.

I wrote in my last piece about the stress I’m under; about what it’s like to live with anxiety. I think that part of being a long-term carer of someone with very complex medical and physical disability care needs goes ignored far too often.

My anxiety isn’t solely about my son’s condition and his care needs. It is also my own health and life. Some of those mornings when I wake up shaking, I wonder what I will find when I look in the mirror. Will I see the woman approaching 57, or will I see the excited, younger woman inside of me who still has hopes of a future which could hold promises of dreams yet to come true for her?

Brendan Bjorn is palliative. He’s sleeping more hours than he’s awake lately. His decline in health doesn’t just affect him. It affects his brother. It affects me. It impacts our entire family dynamic and our future, as well as our present day.

What will happen?
When will it happen?
What will we do when that day comes?
How many years do I myself realistically have left to live and what can I do with them?
Will I be capable of doing what I need to do?
Will I be capable, able, of doing what I want to do?

I don’t think most people, and certainly not politicians, realise just how HARD being a full-time, long-term, carer is on a person, let alone on the family as a whole. Without the proper wrap-around supports, it can be devastating…and so it has been.