Carers Week?

Holding Ethans Hand

The sun is high once more in the sky. It takes me twenty minutes to finally reach the car park. I sit in the car for a moment and remind myself that it’s only for an hour or two.

I take a deep breath before walking to the all-familiar hospital doors—my heart races. I do not want to be here. I can feel my legs turning to jelly. It’s a feeling I used to get often when standing outside the hospital. I do not want to be here.

A councillor once told me that raising a child with a terminal illness could cause post-traumatic stress disorder. I remember thinking at the time, isn’t that awful, while simultaneously thinking that won’t happen to me. PTSD was something, as far as I was aware, that people who lived through wars or horrific abuse struggled with. Not someone like me.

We all think like that, don’t we? “It’ll never happen to me”. But it can, and it does.

I stepped inside the busy hospital lobby despite my head yelling to run and my legs demanding I stop moving. I sat on one of the abandoned chairs by the information desk and tried hard to remember how to slow down my breathing. Was this panic or PTSD? Or both? My mind raced.

“Well, aren’t you a sight for soar eyes” Her soft, friendly voice floated above my head. I knew who it was without looking at her. I stood up, my mind calmer. “Hello”, I smiled, wondering if she’d know I was finding it hard to be here again. She hugged me. “You got time for a coffee?” she rubbed my arm like she did many times before. I nodded.

We sat outside the cafe in the lobby and said nothing for a moment. I cleared my throat. “My brother is in”

“And how is he?” her eyes narrowed.

“He’s ok. He had a few seizures, and they are trying to get them under control” I took a sip of my coffee.

She asked a few more questions, as any good doctor would. She assured me that he was in the best place.

“Is this your first time here since Ethan passed?” She placed her hand on mine. I knew she already knew the answer to that question. “Tough isn’t it” she stated.

“Yeah, yeah, harder than I thought”.

“And how long are you visiting for?” she asked.

“Couple of hours. We have to try to get some home help for my parents before he can come home,” I sighed.

“All very familiar to you. Well, at least they have you helping them. You’ve plenty of experience”.

“Yep” I swallowed my last drop of coffee.

“I can imagine how this all feels so overwhelming right now and so soon after Ethan…” she paused, searching for her next sentence.

“You just visit as often as you can and do what is comfortable for you to do. You already know this and are doing a great job being here for your brother.” She smiled.

She always knew the right things to say from the day I met her eight years ago.

“I know. And I appreciate that.” I stood up.

We both stood looking at the exit for a moment before she laughed. “I know we are both thinking the same thing right now; I’d like to escape into the sunshine, too,” I laughed.

“Well, at least I am not on a twelve-hour shift, ” we laughed.

“Let me know if there’s anything I can do to help. And, I hope you are taking care of this,” she pointed to her heart, “and this,” then to her head.

“Thank you. And, I am, well, I am trying to” I flashed a smile.

We hugged and said our goodbyes. I turned and began my walk down the busy corridor which led to the lifts and pushed the button for level 4.

Ethan and Daddy

It is Carers Week next week here in Ireland.

This is the time of year when everyone in politics reminds the public of the valuable work Carers do.

Politicians talk about how wonderful Carers are, but they won’t discuss how Carers are broken.

They won’t talk about how little support Carers get and how that support is unfairly distributed depending on where you live.

They won’t tell you that every Carer has had to fight tooth and nail for basic help, like transport to and from school or a day centre.

They won’t tell you that every Carer is means-tested in order to receive a weekly income of F-All, and they certainly won’t tell you that this means-testing means that there are Carers out there getting no financial support whats-so-ever.

They won’t tell you that they have put zero thought into Carers who age and those who they care for ageing. It’s like they need to remember many people age!

They certainly haven’t thought about those who need support after their caring role ends.

They won’t tell you that in order for many Carers to be heard, they must take to the media or beg for support from a voluntary organisation.

They won’t tell you they pay those who work as ‘support workers’ or a ‘carer’ outside the home so little that they can’t find the staff. They are paid the minimum wage to be trusted to care for someone with intellectual and physical disabilities.

In my opinion, those who decide to work in these roles are worth the higher salary. They are some of the most crucial underpaid people working with our children yet they are paid F-ALL.

Politicians won’t tell you that those who are Carers and those who choose to work outside of the home as Carers aren’t worth much – so this leaves me wondering what our children are worth to these people in power, the budget holders, the money distributors, the heads of services and yes, the good ‘ol politicians?

My eldest brother is in hospital and ready to be released but can’t be because I have told my parents not to take him home until they get the help they have been screaming for, for months.

We are not the only family ever to have to do this. This is common! Should it be?

Carers Week 2023, Ireland. Yep.


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