Feyi’s story

Caring for someone with dementia can be unbelievably challenging. Not everyone would have the imagination (or energy) to start a business on the side, but when Feyi became her mother’s sole carer, it planted an entrepreneurial seed.

“My mother was diagnosed with dementia in 2019, though prior to that my siblings and I had started to think something was wrong,” says Feyi. “She’s always enjoyed puzzles: Scrabble, sudoku – all those mind games. But then I started to notice the crossword puzzles seemed to be more of a challenge; I’d suggest we played Scrabble and she’d say, ‘What do I do with this?’”

Supporting her mother through dementia

For those living with dementia, the sights and sounds of their younger days can often prove reassuring and familiar. Feyi noticed her mother’s reaction to different types of music. “She’s always liked Rat Pack music – Frank Sinatra, or Jim Reeves; but when I put on Mighty Sparrow or a YouTube video of carnival – oh, there was such joy, such a difference.”

Looking after yourself when caring for others

Caring is tough, there’s no denying that; but Feyi takes it in her stride. “If I could send a message to anybody else, it’s that it’s OK to feel frustrated, it’s OK,” she says. “Feeling frustrated doesn’t make you a bad person; but you have to not transfer that feeling to the care you’re giving – then you’re winning.”

It’s only recently that Feyi has started to appreciate the importance of pensions and financial planning. She wants to get The Black Dementia Company to a point where she can step back and find time for herself (not easy at the moment, though she recommends carers prioritise carving out some time for themselves every day). She is a classic case of the Sandwich Generation, still providing the love and care needed by her daughter as well as her mother.

“My daughter caught Covid at the beginning of lockdown – she’s fine, thankfully. But I couldn’t be with her physically, so I had my phone on FaceTime, saying to her, you need to eat this, drink this – and then my mum next to me – and me in the middle! But the one thing that the pandemic has taught me, is that lots of the things we thought we needed, we can do without.”

Feyi is a passionate advocate for openness about dementia. “Somebody asked me, what does dementia mean to you? And I said – I hate dementia, I cry sometimes, I’m frustrated. People still feel a stigma with dementia, it’s where cancer was in the 1970s. I didn’t really know much about dementia prior to this whole period, and that’s why I’m so passionate about talking about it. There’s no cure or preventative. It has changed my whole thinking.”

Taking it one day at a time with her mother, despite the uncertainty, Feyi still has an eye on her own future. Being a sole carer has made her reflect on her own potential journey into later life (she is in her 50s now). “Will there come a time when I have to ask for help? I have to think about what that looks like,” she says. “What if I need 24-hour care? I would rather be somewhere with relatives who maybe have a different mindset, than perhaps having to go into a home.”

That might well mean retiring to another country; she has family in Nigeria and the Caribbean. “That’s a big question for me at the moment! It’s difficult, I love the UK but as I’m getting older I would rather be somewhere warmer… I think ‘the tropics’ is calling me!”

You can hear more about Feyi’s story and how she set up The Black Dementia Company on our podcast episode Care and independence in retirement.