This morning while I was giving my son, Brendan Bjorn, a bed bath and a shave, my mind once again wandered into the thoughts of being a full time carer. I trimmed his nose hairs oh so carefully. Yep, it needs done. He has thick, dark body hair and can’t blow his nose, so I need to keep his nasal passages as clear as possible. I also did some manscaping, as they call it. Yep again, it needs to be done. And again, he has thick, dark body hair and as a fully, doubly incontinent young man in nappies 24/7, it is the best way to keep that area clean when he passes what is always very loose stool.

Is that too much to write? 
Is that too much for you to read?

That’s just reality sans the sugar coating. It may not be your reality, but for so many of us who have become more than solely parents, it is our reality. I know men who care for their adult daughters during their menstrual cycle, just as I care for my young man with his more personal care needs. Make no mistake, this is reality.

In my advocacy work for disabled children (of all ages) and family carer rights, I’ve been told on more than one occasion that the work carers like me do is merely being a parent. Is it?

As I cleaned, trimmed, clipped, and cared for my beautiful, precious son this morning, I thought a lot about that statement. First off, no, I don’t agree with it. Having said that, when we decide to have a child, there is no guarantee that dream of the healthy baby being born will be the reality. It is always a gamble, a risk, that it won’t happen the way we hope, and I think anyone entering into parenthood should understand those risks and be ready to adapt, just in case life has other plans than the dreams of the pending parent.

BUT…being a full time carer is vastly different than being a parent to a typically healthy child. 

I think we need more discussions on how to treat parent carers.
There are questions to be asked; reforms to be made.

Should the parent of the child who needs full time care due to severe disabilities have to give up everything when crossing into that grey area from parent to carer? Surely there are other ways that the parent can continue contributing to society and their family with working full time, if that’s what they choose. Why can’t the parent carer be supported with home nursing or nursing in a daycare centre while they are out maintaining their career, their social life, their life as the person they once were before becoming *just a carer* who had to leave themselves behind so to care? Would the government (as some do in other countries) not see that it is to their benefit as well to support an active, contributing, member of society via nursing care during work hours? More jobs. More income. More taxes coming in. Less social welfare. It just might also result in carer parents who would have less struggles with depression and physical health issues related to being confined to home caring 24/7, which would in turn also save money from the public purse down the road.

As I float unseen in that grey area between being a parent and a carer, having left my former self behind, it all seems so achievable and logical to me. I wonder if it is?