Tom and Chris's story

Tom and Chris live in Oxfordshire. Chris tells us their story…. 

Tom was 63 when he was diagnosed with Alzheimer’s disease but looking back, it was clear that things weren’t quite right a good few years before then.   

YoungDementia UK has been a life-saver for both of us. Tom was supported each week by Simon, his support worker.  They went out together and I’d get three hours respite.  It gave me something in the week to focus on, knowing that I could have a break.  That break meant I was able to recharge my batteries and helped me cope - it meant I was able to do another week.  

The difference Simon’s support made to Tom was amazing.  Some of the things that they got up to was incredible considering Tom’s state of confusion and they had great fun.  They even went canoeing!   

Simon was a calming influence and supported both of us so much when things became more difficult at home.  Tom was the kindest, sweetest man in the whole world but as his dementia progressed his personality changed and he could be difficult.  It was challenging at times, especially when Tom didn’t recognise me and thought I was an intruder but Simon always helped me find a way round the challenges we faced and enabled Tom to remain at home a bit longer.   

Everyone at YoungDementia UK have been tremendous, offering support and advice at each stage and I don’t know where we would have been without them.  They were there right from the outset when Tom received his diagnosis.  At that point, I could never have imagined, the difference their support would make to us.

It has been frightening going through what we’ve been through but it was comforting sharing our experiences with people going through the same thing.  We met others facing the same struggles at the different YoungDementia UK events and groups and the activities gave us something to focus on.  Dementia can be a lonely path if you don’t have anybody but fortunately I’ve made some fantastic friends through the meetings.  

I can’t speak highly enough of everyone at YoungDementia UK and even though Tom is now in a care home they haven’t abandoned us and are still very much there for us.  I just don’t know where we’d have been without them.  Someone was always at the end of a phone. 

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