‘Hello, my name’s Virginia and I want to share with you some of my experiences and my feelings about knowing that my dad has vascular dementia.
‘My dad was diagnosed a couple of years ago after a number of strokes, and it took me a while to really figure out and understand what this meant. I didn’t know anything about the disease until I knew that my dad had it, and it took me a couple of months to pluck up the courage to actually learn about it.
‘In my head, I just thought it was a really unfortunate, natural stage of ageing, even though my dad was only 65. I just thought it meant you maybe forgot things, you forgot who people were and that it just doesn’t get better.
‘What I didn’t realise is that it’s an absolutely terrible disease, that will eventually kill my dad and will destroy his brain.
‘I’ve had, probably like most people in my situation and my family situation, lots of crazy thoughts going through my head – will it hurt him, will he feel pain, will he know what’s going on? The big fear is, will he remember me? I dread the day when I walk into the room and he doesn’t know who I am, or he thinks I’m someone else. And it’s really horrible to think that, but I am lucky. I’ve got a great sister, and a mum, and family round us and we do talk about this a lot together.
‘Over the last couple of years, me and my sister have made it our mission to start to talk about it quite openly. Last year I ran the London marathon. I was fortunate enough to run for the Alzheimer’s Society, and that became a really great outlet for both of us to talk about it on social media to our friends and to our family, and to say ‘My dad’s got dementia’ and not to shy away from it. Because it almost seems like a bit of a taboo disease to have. No one really knows anything about it and I think unless you’re living with it, people don’t look into it.
‘We hope that us talking about it, and me talking about it today, and starting to talk about it over time will help maybe some people that are looking to take comfort in other people that have the disease.
‘I’m 36 years old, my dad is only 67 and it’s a horrible thing to think that he will spend his retirement after working such a hard life. He’s worked and worked his socks off and given me and my sister and my family a great life. And it’s really sad to think that his retirement will be spent with this disease, and that my mum’s retirement will be spent looking after my dad.
‘So we really want to turn a really bad situation into something more positive, so the more we can talk about it and hopefully help other people that might be going through what we’re going through and understand it a bit better, then we’ll be happy.’
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