A Carer’s Story

Well it’s been a month, and I must apologize for my blog sabbatical, but it truly has been a difficult time, manually walking through and closing doors, while the wind slaps sharply on my heels.

Whoever claims change is easy never let go of a lifetime of dreams or faced mountains no body else had ever climbed.

I’m learning a new pause, with great difficulty I might add, my mind and body does not know how to slow down and stop, i’m resisting a lot and therefore travelling in perpetual circles; I will get it eventually.

In the meantime I was published in the Spring Carers’ Connection, just in time for Carers Week. Carers’ Connection is a newsletter for Carers in the Eastern Metropolitan Region, published by Villa Maria Catholic Homes. Here’s the article.

CHRISTINA’S STORY

My name is Christina Johns and I care for my brave, amazing and talented 37 year old son, who has a clinical diagnosis of Treatment Resistant Paranoid Schizophrenia, Dual Diagnosis, Severe Social Anxiety and Clinical Depression, my son also suffers from permanent short term memory loss.

Caring for someone with a mental health diagnosis looks easy on the outside, especially when everything is going well, and your having a good day, but let me tell you; the truth is somewhat quite different, our role is completely and absolutely exhausting. Depending on the diagnosis it can be as simple as constantly reminding them over and over again of the things that they have to do for each day, (kind of like a dripping tap keeping you awake at night) into a full blown episode of psychosis and paranoia; mind you living with constant and permanent paranoia is also another dripping tap.

Sure Mental Illness is bloody serious, but my son and I have worked really hard to get to a point in our relationship and his diagnosis where we can laugh at some of the really weird things that he has said or done, and often tongue in cheek I will ask him “is that your opinion or are the voices telling you what to do?” “good onya mum” he will say and we both have a little chuckle

I know it’s not always possible to get to this stage with your loved one, but to my son’s credit he has put in the hard yards to become as well as he possibly can be, and whilst his diagnosis is permanent and irreversible and he will always have residual paranoia and voices, he pretty much functions well; even if he does forget everything all the time! We try and laugh about it a lot, that way it’s not the elephant in the room that no one talks about.

Meeting up with other Carers is like taking off our survivors mask, you don’t have to make things up, you don’t have to pretend everything is ok when clearly it isn’t, you don’t have to be brave, you can be vulnerable and fragile and the Carers around you just know. Their acknowledgement is silent, we speak with our eyes, we might nod, we might smile, and sometimes we even hug. Mainly we see what is unseen in each other, that which is familiar.

But on days when we meet, we are mainly laying down all of our daunting responsibilities as we are temporarily transformed into the normality of what we imagine everyone else’s life might be, and we escape into an afternoon of rest and repair. We might go to the pictures, have lunch or go to a show, we feel special beyond what we believe we deserve. We are filled in a way that helps us to go on, and if the journey is tough at home there is support and professional help available from the Staff. Often our untold stories would never have been told if it were not for special outing such as these.

There is so much unsaid about what Carer retreats and outings give back to us, for me; initially I have struggled with the validity that I should deserve to be treated in such a way, a way that I would never treat myself. Moving past that I inhale every moment, I look
around me and enjoy the experience, I take hold of the moment and when I get

home and everything turns to dust, I pull out that moment and I remember, I hold onto the experience and I tell myself how enjoyable it was and that I deserved every minute of it and then I take a deep breath and I carry on with my Caring role stronger and more patient each day.

Being a Mental Health Carer is who I am today, I didn’t choose to be a Carer, in fact I imagined a very different future for my son and I, but this is where we have landed and there is no where else in the world that I would rather be.

 

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