Why I said ‘my’ when it wasn’t - on caregiving, protection & what we carry without thinking

In my last post, I automatically referred to the tax bill as my tax bill. But if I am to be totally honest it isn’t mine.  That big huge bill has actually been given to my daughter to try and navigate and deal with.

I didn’t even mean to say ‘my’.  It just came out.  And I think I know why I said it that way, without even thinking about it.

When you’re a caregiver, you don’t stop to work out whose problem something technically is. You just step in front of it. You take the call. You read the letter first. You absorb the panic so it doesn’t land where it shouldn’t and it isn’t given to someone who doesn’t even have the capacity to understand or deal with it.  You do what you can to shelter them from the ‘real world’ and you don’t think twice about it.

That’s the reflex.  Its automatic.

While under someone else’s watch at 22 months old my daughter fell from a two storey window and suffered a severe head injury

If something threatens her, financially, emotionally, administratively, I catch it. Like I always have and will continue to do, through the judgment, through tears at time, through systems that have no real idea of what they are doing to people. Not because I’m noble or strong, but because that’s what protection looks like when someone you love lives with a severe brain injury and the world still expects them to keep up.

So when a bill turns up, I carry it as though it is mine.  When penalties stack, I carry those also, as though they are mine to pay.  When systems don’t talk to each other, I carry that too.

Contrary to what most people think, caregiving isn’t just helping with daily things. It’s holding the edge between your loved one and a system that doesn’t slow down for disability, capacity, or context.  It doesn’t slow down to cushion you in any way or hold your hand when you are so out of your depth you feel like your drowning.  The systems are cold and unaccountable and you are left dangling to navigate them.

You learn to translate language that isn’t written for them.  You learn to spot consequences before they can.  You learn to manage stress that isn’t yours, because if you don’t, it lands on someone who can’t understand or carry it.

I know I’m not the only one who does this.  I look around and I see caregivers doing it quietly all the time, shielding, smoothing, stepping in front of impact so their loved one doesn’t collapse under it.  Taking the weight fully on their shoulders and backs to try and shelter them in any way they can while carrying a weight that isn’t entirely theres to carry.

And most of that work is invisible.  No one talks about it as they don’t want to breach their loved ones privacy or feel like they are letting them down in anyway.  They don’t want to show any weakness or let them know that they are human too and sometimes it can be alot to carry, as it doesn’t show up in spreadsheets or policy documents, but it shows up in the bodies of those who care.  In our exhaustion and in the way we instinctively say “mine” even when it isn’t.

It’s hard for me to write about this and share it.  I have always kept so much of it private.  The extent of her accident and her incapacity.  The caregiving role I took on without even thinking about it and the funny thing is I never considered myself her caregiver for the longest time.  It wasn’t even something we talked about or even said.  I was always just her mother.  I guess I’m sharing it because until systems understand what caregivers actually carry this will keep happening. And the cost will keep being paid quietly, by families, behind the scenes who are just so unequiped to deal with it, financially, emotionally or administratively.  It’s not right.