When my daughter Lauren (AYL Founder & Director) asked me to write something to share during Carers Week, my initial thought was, how I would put all my thoughts onto paper, as there is so much to say. I am both Lauren’s mum and her registered carer, two roles that are entwined, with no clear divide between them. Whilst I care for her medical needs in a carer’s capacity, I am first and foremost her mum. Becoming a carer ten years ago was something I obviously never expected, especially as Lauren’s disability was very sudden and unexpected, yet it is still very complicated, unpredictable, and terrifying at times despite it being "familiar". However, this means my role as her carer never finishes, it is a 24/7 job.
I won’t lie, it is very difficult and stressful. I find the physical aspect of managing her ever-changing physical needs to be exhausting and draining, especially as I have osteoarthritis. But for me the hardest part is the emotional aspect, it is mentally draining, and my brain never switches off. Nobody tells you that being a carer isn't just a physical role, you have to plan, prepare, and organise SO much. Nothing is spontaneous, every moment of Lauren's day is planned to the tiniest of detail, and then if that fails, we have multiple backup plans, treatments, and regimes. Yet her condition still manages to throw unexpected and unplanned curve balls, which can sometimes occur over time or in a matter of minutes. Causing our family to constantly be prepared for an emergency, whether it's on a plane, during an appointment, or watching tv in bed.