The Forgotten Carer

I am a forgotten carer. I didn’t choose to be a carer and, if I am honest and I had a choice, it wasn’t on my list of dream jobs when I was younger. However, when you have a child or children with disabilities, you become a carer by default.

Parents like me have no choice in it; it is something that we become instinctively and quite rightly so, as they are our children. I brought them into this world and I will care for them to the best of my ability until the day I die.

When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those. I am a full-time advocate, fighting battles with teachers and the local authority over my child’s right to a suitable education. When necessary, I battle with GPs and the NHS for hospital appointments and assessments with the relevant clinicians, taking notes on everything. I track dates, make follow-up appointments, submit paperwork on time and keep a diary of important dates. I arrange blood tests and then spend months preparing a socially and mentally impaired child for what will happen. There are dates for everything — I’ve learned to juggle my calendar with military precision.

I am a forgotten carer. As a direct result of becoming a carer by default, I am, in effect, unemployable. I don’t want the benefits that having a disabled child can qualify us for, I want a career and I don’t want my child to be disabled. I am not lazy — I want to work. Sadly, I simply do not have the time to be reliable for any employer. Even being employed by my own company resulted in me having to train someone else to fulfill my role, as I couldn’t meet my obligations in the workplace.

I am a forgotten carer. There is no support, either mentally or physically, for carers of family members that have no voice of their own. Services argue over who should be providing the support that my child needs. Respite services are turned down for various reasons that seem totally unjustified, and when I ask for reevaluations, they move the goal posts even further. Families like mine reach their breaking point and risk simply falling apart.

I am a forgotten carer. Pushed aside and broken, exhausted and stripped to my very core. Friendships and relationships have diminished before my eyes because I’ve lost sense of whom I truly am.

We are forgotten about. And all too often, due to the enormous stress and physical strain that we are under daily, we have our own health issues to contend with. I’ve been diagnosed with several conditions that are triggered by extreme stress. Who will look after me if I end up disabled? Who will look after my children? Will they be taken into care because I can’t fulfil my duty as a parent, let alone a carer? I worry about everything — What if I end up depressed and unable to care for any one?

I am a forgotten carer. I am exhausted. Sometimes it’s even too much effort to take a simple bath or shower. Forgotten carers can feel underpaid. We fit in more than 24 hours’ worth of work into a day, and our shift never ends.

I don’t want to be a forgotten carer anymore. I definitely need some help.

Isn’t it about time that “The Forgotten Carers” aren’t forgotten anymore?

Until that time comes, of course I will continue to go above and beyond. I will continue to push my broken body through ridiculous obstacles and I will continue to care and love my children unconditionally.

Jodie Eaton

I am Jodie, the mum of three beautiful children. I write to gain awareness, understanding and acceptance of autism, which my two eldest are diagnosed with, along with numerous other disabilities. Please follow me @lotsofloveandaffection.

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