Hello All,

I have cared for someone with LBD in the past.
I am now scared I may be looking after someone else in the future. I not sure if what I am seeing or feeling is all in my head or I am in fact seeing the start of LBD.

I know the Symptoms of LBD but I am looking for symptoms that you only realise were the start of LBD before the bigger obvious Symptoms started.

I am not sure if I am looking into this too much or I am sensitive to the past.

So sorry if I am not making much sense.

Take care,


I don’t know specifically about LBD, but if anyone has had experience of a relative or friend having dementia, they will know when a different friend or relative is showing symptoms, much earlier than the medical profession will diagnose it.

It’s pretty obvious really, you know someone far better after 50 years than after 50minutes.

HI Katie,
did you keep a diary as suggested by BB in your earlier March thread? Is there anyone you can show it to who both knows your husband and has experience of Lewy bodies.

You could share your concerns with your husband’s GP - although he won’t be able to discuss your husband with you, he will be able to listen/read your concerns and be on the look out for symptoms.

However, I think it is very hard during Covid to be clear of anything - your husband may be suffering the early stages of Lewy bodies but he might equally be acting strangely due to the stress, anxiety and pressure of the pandemic. Equally, you will be more aware of any changes in him as you are spending more time together. Your mind will be trying to make sense of changes and will automatically look for what you know and you have had firsthand experience of coping with someone with LBD.


Hello Ayjay,
Thank you for your reply. I absolutely agree.

The problem with LBD is it is so hard to diagnose and even being misdiagnosed in medical circles.
The Symptoms can be for ever changing. I guess I will just have to wait and see what life brings and look for changes and markers.

There are many symptoms that are on the list but I am looking for the small changes that people may notice a long time before the Body stiffness, hallucinations, cognitive problems. The symptoms where you think something is wrong but can’t put your finger on it or you don’t know until you have a diagnosis you then realise they were symptoms.

Thank you again,


Hello Molly,
I have kept a Diary and I have shown a friend. Their reply” He has always been off the wall lol” doesn’t sound like I should be worrying.

I don’t think lock down has made anything worse or changed things, which is good.

I can’t say I have seen any new changes but I notice things he would have never have said or done in the past. My 18 year old son did say his Dad is eating differently, too quickly, heavy breathing and not chewing his food. Something so little but I take it on board and just add it the list. I have never mentioned my worries to my son. I would feel so disloyal to his Dad and don’t want to worry my son.

Life is good and we are all safe so I feel slightly selfish even talking about this. I know so many people have so much more to deal with.


I think the very fact your son has commented on a change in dad’s usual behaviour is important.
I’m sure I saw my sister in law’s dementia when I did because she was always so super organised as a rule, working as a civilian for the Police. When she started being vague, my alarm bells began to ring.

Hello Bowlingbun,

Thank you for you message. I agree with you, it all seems to be adding up. It’s just where I go with it.

My husband would never agree to going to a doctors. If I do ever mention anything in a diplomatic way my husband will say he is stressed or he has always been like it and then the cold shoulder for a while.
It’s not every day and then there are days I think it is me and I am looking too deep or thinking too hard.

The eating thing is a bit of a problem as my son says he finds it hard to sit with Dad at the dinner table. How do I tell my husband that. He doesn’t say it in a rude way but it sounds so terrible to hear our son say any thing negative about his Dad. I make him sit at the table with us as he has always done. I am now watching two people at the table, one who is shovelling his food and not chewing and sometimes a runny nose when eating. He is sometimes aware of this and sometimes not and I just hand him a napkin. Then I have my son who is making a face whilst eating his food because he is 18 and watching something that is making him sick. All sounds so petty but turns into a big thing.

I am sounding a bit unsure of every thing.


Katie, maybe it is time to say something to your son, like dad really doesn’t seem to be his usual self at the moment, does he?
If you say it this way, it gives him the opportunity of opening up about how he is feeling. He may have been worried for some time, not just about dad, but the effect on you too.

Maybe say that you are “thinking of talking to dad’s doctor”. Sometimes our children can see things we don’t.
My eldest son is a 44 year old engineer, lives with me, he has the top of the house, I have the ground floor. I value his opinion, although sometimes I wish he was wrong, especially about what I want to do in the garden but cannot any more! He’s always right though.

Fantastic advice and something I feel I could do.
When the time is right I will say it exactly how you have said.

My son is the youngest of four, his older siblings have now all left home so I feel he really only has me to talk to.
I do know he talks with his siblings and they are very close. It may be he has spoken with them.

Must be lovely to have your son at home.
I miss all of mine so much, it will be very quiet when my youngest sons leaves home.

Thank you again,


HI Katie,