I first heard the word carer when I had Gbenga. I probably heard it a million times before that but it didn’t resonate with me because I wasn’t one. Gbenga was born with Down’s syndrome.
He’s also got a diagnosis for autism, ADHD and ODD. He has epilepsy and asthma so caring for him takes up most of my time. It’s what I do. It’s my career.
Gbenga requires a lot of supervision and assistance in terms of care. From the minute he’s awake you’ve got to be on the ball. He wears nappies because he’s incontinent.
Getting him ready for school, now that he’s 14, it’s really challenging. He’s non-verbal so he has frustrations at not being able to communicate as well and he’ll show you how he really feels with his stubbornness.
Fight to make time for me
Anything other than my son I have to fit in. I have to really fight to make time for it. I had a career before, a professional career. I don’t have that anymore but I have all the ambitions. I am an artist and a writer and I’m very creative.
I thank goodness for the tremendous support I’ve received from my local Carers Trust Network Partner. Every time I go in to the office I feel like it’s the closest thing I’ve got to family.
I know people there know me. They’ve heard me crying. They’ve seen me very distraught, overwhelmed. I’ve accessed counselling through them which has been amazing.
Sometimes you can’t think about anything other than the person you’re caring for and you really can feel resentful if you don’t do enough to care for yourself. How can you love someone so much and on the other hand feel resentful to them?
This is the biggest challenge of my life now. It’s actually teaching me to care for myself. It’s a hard knock life but something in it is really beautiful as well.