Jenny’s story

I have a part time job, and I’m a freelance so I can take time off – I just don’t get paid. For instance, Mum’s got a cataract operation coming up and I’m going to need to be in the hospital for six hours. So that means taking the whole day off. I’ve divvied up the caring with my brother. I deal with the health side of things and he sorts out Mum and Dad’s finances. As the female I’m supposed to be more in touch with emotion.

Mum was diagnosed with dementia about five or six years ago. I had to really push for a doctor’s appointment and then for the doctor to give us a hospital appointment. Even now I spend a lot of time in the GP’s: for instance the dementia nurse and the GP differ over my Mum’s medication. We have an annual review – 10 to 15 minutes – with the dementia nurse.

I’m an expert on Mum’s health but have no time for my own health. I even gave Mum’s date of birth instead of mine. I have to be on top of Mum’s medication: filling out complicated forms: I’m talking about 30-page documents. The dementia nurse put me in touch with the Carers Centre and I do rave about it. I make sure that anyone who’s a carer knows to access it. I was grieving for the person that Mum was, and facing the reality of her death. I’d been watching her change for a year at that point. I attended the CrISP (Carer Information and Support) Programme which was brilliant. I met other carers of people with dementia, both full and part time. And the course approached dementia both scientifically and visually. It really helped me to see an image of proteins eating a brain and also to have a mental picture of a bookshelf losing little bits in different places.

Dementia is so much more than just loss of memory. There’s perception difficulties: seeing a flat piece of lino on a bus as a puddle for instance. Or just looking straight ahead all the time. Now it’s affecting her heart, which was noticed by the dementia nurse. I had to fight again for a hospital referral: in fact I sat in the GP’s surgery and said, “I’m not moving till Mum gets a referral”. So now she’s on yet another medication, which is tough as she was really healthy until her seventies.

I have to be careful with stress and so on because I have epilepsy. But because I’m female there’s an expectation that I’ll do more and deal with ‘the health stuff’. My brother has family – and he’s a he. If Mum’s going on a trip for example, then the expectation is that Jo would sort everything. And then because I’d had to fit everything in I got impatient with Mum. Then I got blamed for missing out a tiny thing – a bag for her dirty clothes.

I met other carers from a BME background through The Carers Centre. It was so nice to know you’re not alone. I’d say there’s a cultural but also societal expectation that the female will do the caring. After all, the school always phones the mother first. My brother gets all the thanks for whatever he does. I don’t even get a thumbs-up emoji let alone actual thanks. Somebody from The Carers Centre shared the brilliant idea of celebrating the person my Mum used to be and saying welcome to the new person who’s taken her place.

There are a huge amount of unpaid carers in Brighton & Hove who aren’t thinking they’re carers. I sometimes feel guilty calling myself a carer because I don’t live with my parents. Through The Carers Centre it’s been really helpful to find the similarities between cultures about caring. I’d highly recommend anyone who thinks they’re a carer in any way, shape or form to contact The Carers Centre.