It is an odd term.
I have always cared for my family, even before having a child with higher than usual care needs.
“Carers” are people I can pay to come to my home to help support my son and to support me in caring for him.
Then they go home to eat in peace, relax, shower and possibly sleep in over the weekend. Maybe they have plans to go to a show or for a meal?
Plans not affected by being “a carer”.
Yet, that is not my life.
My day starts when someone else needs me. That might be at 5am. There may not have even been a finish time the night before. Some days blend together. But my person needs me and they need me before I have had a wash, or got dressed or had a coffee.
My day has started and I do it willingly.
Without me, another person might suffer discomfort or indignity. Or they might feel alone and as though they do not matter.
Even when my body hurts, even when it is a struggle to get up, even when I am exhausted, I get up and I do what is needed. No day off sick, no agreed annual leave. Ever.
My “carer” role involves doing whatever is needed, without a thought for my health and safety needs, without asking if I had my break and without question of whether this job should have two people. And I am needed for physical tasks all day. There isn’t an educational placement which will meet his needs, so I do that too.
Yet when I pay people to come in as “carers” those questions must be asked and must be answered. If my paid carer is unwell, or injured in any way, I send them home to rest.
Because they can’t possibly risk themselves and they can’t possibly give the role what is needed if they are unwell. I have a responsibility to them.
Even if I am more unwell than they are.
So what am I?
Because “carer” doesn’t really fit.
I am not just “mum”. I crave times where I can just be his mum.
I care out of total love, not occupational requirement.
No breaks, no leave, no rest, no recovery.
I often compare what I do to working as a labourer on a building site, only it is one where the bags of cement and the piles of rubble fight you as you move them.
I am responsible for my much loved person.
I am responsible for his paid carers.
But where is the care for carers like me?
Yet providing my services round the clock.Day in, day out.
But what happens when we break?
I hope I never have to discover that.
I know I “bang on” about Changing Places toilets but with a good reason.
I need to recruit carers.
I need a break and my son needs people with energy to go out with.
He also needs more than just me.
But paid carers can’t take my son out unless they can manage his needs.
Nor can they safely take him out if they can’t use toilets themselves.
And without Changing Places toilet facilities, they cannot “go” either.
So on top of everything else, I also need to change the world around us.
Paid carers go back to their other life.
This is my life.
“Carer” doesn’t even begin to describe it.