Hosna’s story: the challenges of living with bvFTD

Before we had seen Professor Fox, my mum and dad were still going to the office. So she was still using public transport, still walking past the school children every day, and she started throwing leaves at them, and then one of the mothers got really concerned, and then the police turned up at the doorstep. There was an incident at ASDA where she’d gone up to a child and done this, and then the security people were called, and they called the police, and they ended up on the doorstep. And I tried to explain that my mum has dementia. And the police were just like well, can you travel in packs? And I said, with who? You know?

Every time my mum wants to go out, how on Earth are we gonna gather enough people to sort of surround her so she doesn’t touch anybody? It was very, very little empathy. Because my mum looks so young. She doesn’t look like an 80 year old gray-haired woman, where most people would think, oh, it’s all right, they’ve perhaps got dementia and they don’t understand what they’re doing. So this is all really, really distressing. Even the local shop, where my mum had been going since 1985 to pay her newspaper bill, they didn’t want her in the shop anymore. And I went in and I tried to explain so many times.

Look, she has dementia and if she’s acting a little bit funny, here’s my number. Just give us a call, we literally live around the corner. We’ll come and get her if she’s in the shop and she’s being a bit of a nuisance. But it didn’t matter what I said or what I explained. People don’t understand. There’s a lot of ignorance and stigma around mental health issues, unfortunately. Especially something like young-onset dementia. One thing I should have added that in my culture, there is no word for dementia. You’re either normal or mad. So it’s a very negative word that’s associated with anybody that displays changes in behaviour. No one comes to visit my mum.

Nobody asks me any questions about what’s happened to her. They say, oh we know she’s ill. But that’s as far as the conversation goes. And I find that really hard to deal with. Like, the very people that my mum did so much for over the last 30 years, kind of don’t really want to know her. And I have been told that’s because, not to take it personally, they don’t really understand. But it’s really hard, you’re just so socially isolated.

That’s– yeah, just some days it really gets me down. My mum’s illness takes up so much of my time. So, I had a very successful career before. I have a degree in engineering, I went to business school in America. I used to work as a management consultant. And it’s just not possible to follow your career and take care of somebody with FTD. Because, even though my mum has carers, I still have so much to do behind the scenes during the daytime, when she’s out. I may have to arrange certain doctor’s appointments, follow up on tests that she’s had done. No day is the same. Some days my mum’s really noisy, sometimes my mum’s really quiet.

And as the disease progresses there’s more and more that you have to do. So it’s really impacted my life a lot, to be honest.