No amount of expectation can prepare you for the words dementia with Lewy bodies, when all you want to hear really is, there’s absolutely nothing to worry about because you’ve imagined all the symptoms. Today, My 77-year-old dad was told that he has Lewy bodies dementia. I have just had a fantastic week away with him and we left my mum at home to have a rest herself. Does anybody have experience of how to begin to understand how best to support a loved one with this diagnosis please?
New today. My Dads diagnosis came and I’m reaching out to those of you who know what that feels like.
- Thread starter AnniP
- Start date
Welcome to the forum @AnniP.
I’m so sorry to read about your dad’s diagnosis. You must be reeling just now. It’s lovely that you had a good week away with him. That must have been a real support for your mum.
I’ve not personal experience of LBD but I know there are other members on the forum that do. I’m glad you’ve found the forum as you’ll find people are very will to share their experiences and offer support. In the meantime you might find something of interest here -
www.alzheimers.org.uk
I’m so sorry to read about your dad’s diagnosis. You must be reeling just now. It’s lovely that you had a good week away with him. That must have been a real support for your mum.
I’ve not personal experience of LBD but I know there are other members on the forum that do. I’m glad you’ve found the forum as you’ll find people are very will to share their experiences and offer support. In the meantime you might find something of interest here -
Dementia with Lewy bodies (DLB): what is it and what causes it?
Dementia with Lewy bodies (DLB) is a type of dementia caused by Lewy bodies, which are clumps of protein in the cells of the brain. Read more about what DLB is, and who gets the condition.
www.alzheimers.org.uk
Glad you had a good time away. All i can say is prepare yourself as my Husband has it and it is now a life of hell. Enjoy the ride. If you can get any kind of help out there from doctors etc goo luck with that. I sound very harsh but that is how it has affected me and my family. 💔
Thank you for your reply. It’s about acceptance of the diagnosis and help for my parents at this early stage. And if I should move to be nearer to them as I’m an hour away.
Hi @AnniP, my husband's diagnosis is LBD, just coming up to a year or so ago. We're navigating our way through it one day at a time, trying to adapt on the fly to whatever new random oddity it chucks at us and trying to retain a sense of humour about it whenever we can. Make the most of the good days (sometimes good moments, to be honest as it can change so quickly), and get whatever support you can in place, not just for your dad, but for you and your mum too. One thing I've already learned is that LBD doesn't seem to be all that well understood, even by the GP, so take some time to look up what's available, the information and resources to help you help your dad. I now look at information relating to Parkinson's Disease too as this often gives more insights into LBD as they are so closely related. All the best to you all.
Hi there. That is not good to hear about your Dad. I would like to know how you managed to get a diagnosis for your Dad, as my Husband has dementia, but we think he has Lewy bodies. Thankyou.
