Des was diagnosed with Lewy body dementia at the age of 60. He lives in Oxfordshire with wife Valli, and their two children Yasmina, 18 and Yousef, 15. His GP referred them to YoungDementia UK following his diagnosis. Des and Valli tell their story.
‘In the early stages, I was worried I was going to die within a month. I was very worried about getting my accounts and Will sorted out and putting in applications for benefits.
‘But I wasn’t sure how to go about doing anything. If YoungDementia UK’s Young Onset Dementia Advisor Emeline hadn’t been around, I would have been completely lost. She has been a huge support with all the paperwork. If you’re going to have dementia, Oxford’s the place to do it!
I would have retired in another five years but I have decided to stop work. It has a massive impact on us financially. We’re both self-employed, have school fees to pay and my daughter is due to go to university in September.’
Valli continues, ‘I am still working, although I’m working less. But no regrets about it. It is what it is. I just wanted to be at home, not only for Des but for the kids. Telling them was our main worry. We told friends and family first to create a comfort zone around the kids, so they don’t only have to come to us if they have questions, or concerns.’
‘Dementia has affected me in different ways,’ says Des. ’It means I get more tired. I also lose things constantly. I spend the morning losing stuff, and then the afternoon trying to find it. But my life is still remarkably busy. The day seems full and I never really stop. There are lots of medical appointments and I really do enjoy the YoungDementia UK get-togethers and groups. We try to get along to as many as we can.
‘They have kind of jump-started my knowledge and given me confidence. People have been very affirming; I’ve learnt a lot from them. I don’t want to be melodramatic about this, but I could be at home, waiting to die, whereas I’m still waiting to live.’ Valli adds, ‘By going to these meetings, we can see that there is a world out there, there are people to meet and it’s nice to connect with them.’
Des continues, ‘I also get post-diagnostic support from Adapt Project Worker, Mandy. She’s a great listener. She’s been very good at helping me to calm down and be in the moment. Her encouragement is very valuable.’
‘The key thing about Mandy,’ says Valli, ‘is that Des has got a space to talk to somebody who is not his wife, a family member, or friend. Mandy takes Des as he is now. The safe space for emotional and psychological support is so vital.
‘Des also sees support worker, Liz, three hours a week. She comes to our home and he does whatever he wants to do. It is a fantastic resource.’
Des adds, ‘We are blessed beyond belief in all of your support; it is extraordinary. ‘
- this interview with Des and Valli took place in May 2018.