Carers week?
Carolyn Voisey
Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing...
June is the month of ‘carers week’. Yet another week of awareness raising, when those of us living this life are already acutely aware of what it entails. Day after day after day It doesn’t matter how much we love our children or our parents the fact is being a carer is incredibly hard both physically and emotionally.
People see the big issues – the never-ending fight for support and appropriate equipment, but they may not necessarily appreciate the smaller battles that slowly erode your resilience over time. It’s like experiencing death by a thousand cuts.
In the fourteen years that the Dude has been on this Earth, I don’t think we’ve ever had a year quite as challenging as the past 12 months have been. With multiple medication changes, struggles with seizure control, appalling side effects and a fourteen month wait for a new wheelchair, things have been utterly gruesome.
As parents all we want to do is make everything alright for our children, to protect them and ensure that they have everything they need. Not necessarily want but need. As parent carers, that isn’t always possible. We don’t need another awareness week.
What we need is more support.
Better services, that actually meet our loved one’s needs so we can have a proper, restorative break. Sufficient respite placements. Children’s hospice care funded, appropriately, so that these amazing places don’t have to battle to keep going. We need appropriate mental health support, counsellors trained to understand the specific issues we face, and an understanding that for us our roles as carers will likely only come to an end one way, and it is not something we ever want to think about.
It took six years of fighting to get overnight care at home for the Dude and another three to get funding for carers to go into school with him. Not because he wasn’t eligible or because there was any disagreement that it was desperately needed. Partially it was a lack of funding, partially a lack of suitably trained providers.
While Carers Week is a nice idea, it does nothing to improve the situation for unpaid carers. What we actually need is a genuine change in how our contribution is viewed by policy makers and those in positions of power and influence. Only then will the underlying issues around funding and provision of services be addressed. And only then will things have any real chance of change.
