New today. My Dads diagnosis came and I’m reaching out to those of you who know what that feels like.

AnniP

New member
Nov 30, 2023
4
0
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?
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,075
0
73
Dundee
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 -

 

special 1

Registered User
Oct 16, 2023
127
0
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?
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. 💔
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,589
0
Hello @AnniP and welcome to the forum from me also. My husband was diagnosed with LBD about five years ago and although he has his difficult moments he is mostly calm and easy to look after. If you have any particular questions on LBD please feel free to ask and I will do my best to answer.
 

AnniP

New member
Nov 30, 2023
4
0
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. 💔
I’m so sorry that it is so difficult for you.
 

AnniP

New member
Nov 30, 2023
4
0
Hello @AnniP and welcome to the forum from me also. My husband was diagnosed with LBD about five years ago and although he has his difficult moments he is mostly calm and easy to look after. If you have any particular questions on LBD please feel free to ask and I will do my best to answer.
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.
 

SeaGirl

Registered User
Nov 23, 2023
22
0
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.
 

special 1

Registered User
Oct 16, 2023
127
0
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?
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.