What does parent-carer burnout look like?

We hear the word “burnout” a lot in our society. We live a fast paced, technology driven, achievement based life style and often it gets the better of people. We become tired and run down, eventually leading to mental and physical exhaustion, or burnout. There’s a very stereotypical view of what burnout looks like. Sleeping all day, perhaps run down with flu, unable to keep up with everyday jobs like food shopping for example. And whilst parent carers absolutely do exhibit these symptoms, I believe that more often than not parent carer burnout presents itself in a very different way. It’s not always in the more expected version of looking physically ill, and this is where professionals and parents can often clash. In order for a parent to prove they need support, they need to LOOK like they need support. The problem is, professionals are looking for the wrong signs of burnout.

Over a year ago I had, what I viewed to be, a critical appointment that could have been the turning point in support services and authorities accepting our family’s plea for help. I was exhausted and in pieces, yet I woke up, peeled myself out of bed, found some smart clothes and put my make up on. The appointment happened and I struggled to articulate our challenges. My plea for help wasn’t what I had hoped it would be. But it turned out to be completely irrelevant anyway. The professional hadn’t noticed me struggling to put a sentence together. She had made her mind up purely on the fact I was wearing make up. She said “you look fantastic” and it was insinuated that things couldn’t be as bad as I was making out because of what I was wearing.

But if she had really looked and had asked the right questions, she would have seen just how burnt out I was. So what does parent carer burnout really look like?

Its turning up to a meeting with the wrong set of notes. You’ve got tomorrow’s meeting notes instead. In fact you have so many notes, it’s now an essay. Or maybe a dissertation. Who knows.

It’s your shoulders sinking with relief as your child enters through the school gates or doors. It’s not “phew! Ten minute peace at last!”, it’s “thank God. At least the authorities can’t penalise me for non attendance today”.

It’s not being able to find time to fit in all your meetings. You expect this of a full time professional. But when a parent carer on carers allowance cant find time to fit a professional in for an appointment, that professional should be asking themselves just how much this parent is taking on and having to deal with. A professional works 9am to 5pm. 9am to 3pm is the time a parent carer SHOULD have off. But when you have to fill that time with appointments, when do you rest? You become a 24 hour carer.

It’s being unable to hold back tears as they silently trickle down your cheeks in a meeting. The self control has gone and the emotion is so prevalent it comes out in an involuntary way. Like a saucepan which boils over and you just cant get there in time.

It’s being too embarrassed to have friends and family round because your house hasn’t been cleaned for weeks. You see it, you just cant get to it. You care about how your house looks, and the shame of living in messy house is just too much to take.

Its dreading the sound of the post box. What now? You avoid looking at the mat or you bundle all the letters up into a pile until you have a moment of strength where you slowly open each one. Another appointment, another refusal, more paperwork. Your hands are tired from writing and your eyes are tired from reading every article, law and case study you can find to use in your appeal.

Its having to practice speeches before attending a tribunal or hearing. Standing, looking in the mirror into your own tired eyes. Do you even believe you any more? Its repeating, “you can do this” over and over until it sticks.

It’s call screening. It’s fearing your phone ring with an unknown number and only answering if you have the strength to deal with a worst case scenario.

Its having coffee with a friend just so you dont lose them, when really you just want to be curled up on the sofa. You want to be sociable but your resources are so depleted you just cant help but need to rest.

Its forcing yourself to send a text to a friend so they know you’re still here because one day you just pray you’ll be able to see them regularly again.

Its writing one update on your child and copy and pasting it to everyone who has asked because you cant face writing down reality more than once.

Its fearing the day you die so much that you make sure several people know “the plan” on what happens to your child.

Its fibromyalgia. Its Chronic fatigue syndrome. Its long term chronic illness caused by all of the above.

You could look perfect every day and no one would know. That’s why parent carer burnout is different. It hides itself within your home and your diary. It lurks in the post and waits to pounce the next time your phone rings. You never know where the next blow will come from, and you live in fear of just one more appointment or medicine being added to your so delicately balanced daily routine.

Just remember, the true friends understand. They will always be there no matter how long you are MIA. Look out for each other, be there for each other, because parent carer burnout is truly one of a kind.

Thanks for reading,

Danielle

5 thoughts on “What does parent-carer burnout look like?

  1. Add to that the full time job & being a wife… the silent tears are flowing & the worry that ‘I can’t do this anymore’ becomes a reality.
    However we are not alone. Respect to all parent/careers 🙌🏻

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  2. 10 years after my child got ill I now have fibromyalgia and am in constant pain caused by exactly this; even now she is 21 we can’t get the help and support we need – even after working a 60 hour week my husband has to look after both of us. Knowing we are not alone helps, it battles the isolation and gives me the strength to keep fighting for just one more day xx

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  3. Excellent summary of most people’s lives with a autistic or disabled child. I have twins both a.s.d and yes feel all the above. Plus for the past 10 years sleep pattern is awful both children wake up different times of the night, so now sleep is an average of 3 hours per night, then you know the rollacoster is ready to start all over again.

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