What we need for Carers Week 2019…and every day to follow.

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It’s that time of year again. It’s Carer’s Week. The week where carers such as myself are put on a pedestal of praise made of sand, ready to get it washed out from under us later today when the tide rolls in.

I can’t speak for anyone but myself, but I dare say I know that I’m not alone when I say the following:

  • I don’t want the praise. I want actions of positive reform to make my life more tolerable…and maybe even a little bit enjoyable.
  • I don’t want the free luncheon or weekend away at a resort as a way to say ‘thank you for your sacrifice.’ Anyway, I can’t get out of the house to attend. I would rather see the funding spend on more overnight respite, in home respite, or put into the special medical and educational requirements for children like my Brendan Bjorn.
  • I don’t want to read a week’s worth of newspaper articles about the mental health needs of carers in crisis, only to see it once again go nowhere when the week is over. I want to see counseling services made available to carers like me, and our family as a whole, and to be available in home if required. 
  • I don’t want platitudes and condescension. I want intelligent, timely dialogue and for our needs to be heard – and then acted upon. 
  • I don’t want others making decisions for me and my family, such as the steering group which discussed Loco Parentis last year without including a parent representative. I want family carers like me to be at the centre of discussions and decisions about such important issues that will impact our daily lives.
  • I don’t want every single day be such a fight, but it is. A fight for services; a fight to organise my son’s needs; a fight financially to survive; a fight to not completely breakdown or give up, worn out from all the fighting, the isolation, being housebound, and having no help with the nursing level care I do literally 24/7 all on my own going on 15 years now. I want the system to see that parents like me need a wraparound service to provide holistic supports, and then for that system to actually provide those supports. 

And I don’t want to continue feeling the way I do: lost, alone, exhausted, broken.

I want to feel whole again. I want to have a social life with friends. I want to utilise my education and experience outside of the home. I want to have people reach out to me because they actually like me, Tracy, not because they feel pity. I want to be free again to go on hikes, go to the beach, take long walks, or wander around a museum. I want to not feel like my life is passing me by and that I’ll die with these same feelings, nothing having changed.

So, no. Please don’t put me on that pedestal of praise built of sand. I know the tide will come in later today to wash it out from under me. 

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