Mum just been diagnosed


Registered User
Jan 29, 2008
Hi, I am a new member to this site.

My Mum has just been diagnosed with early Lewy Body dementia and she is struggling with dealing with this diagnosis.

Has anyone out there got any ideas that could help her come to terms with this?


Registered User
Jul 31, 2007
Dear Honeyc,
Welcome to Talking Point. I am so sorry to read about your Mother.
There are fact sheets on the Alzheimer's Home Page.
Local Alzheimer's Branch are very supportive.
Some one else will come on line later and you will find that everyone is very helpful.
Wishing you very best wishes.


Registered User
Aug 29, 2006
SW Scotland
Hi Honey, welcome to TP.

I'm sorry you mum has had this diagnosis, and I'm sure you're finding it difficult to come to terms with too.

TP is here to support you, and to try to answer any questions you may have, though we're not experts. We on;y speak from personal experience. The support is invaluable, though.

If you want to find out more about LB dementia, the society's factsheet will help:

You will find factsheets on a number of subjects which you may find helpful.

Please post again, whenever you like.

Best wishes,


Registered User
Jan 29, 2008

Thank you for your very kind comments. I have read the factsheets and lots of other info I could find on the internet about LB and understand a little more.

The thing I am finding very hard to deal with is my mother's hallucinations and the extreme paranoia. She has been going on about seeing a little boy across the road and other people for some time. Obviously, all of this was happening before we had had this diagnosis. I feel so bad now for the way I reacted to all of this. I have got very cross and upset with her over her continued insistence that these people were real when no one else saw anything.

I have read some of the other posts on this site and will try my best to be understanding and try to steer the conversation in another direction.

Somewhat understandably, my mother feels as though everyone around her is ganging up on her. She is scared by this diagnosis and I will try to pass on to her alot of the info I have read so that she can try to understand more about her condition, if she wants to.

I am very glad to have found this site. It is very helpful to feel that you do not have to face things on your own and it is very helpful to read other peoples experiences and suggestions.



Registered User
Jul 31, 2007
Hi Honeyc,
Glad that you have found reading material that helps you understand the illness.
It is different for everyone, so there are no set rules.
Just by reassuring your Mum and letting her know that you love her goes a long way. We know it is so hard to keep calm when under a lot of stress and worry but you are not alone, there are so many people on Talking Point to help and support.
Best wishes


Registered User
Oct 15, 2007
Hi there, my mother (aged 64) also has dementia (we beleive of the LB type although no halucinations etc). This TP site has been invaluable to me and I get much 'comfort' from chatting to people and reading their stories/advice. I have also contacted the local Alz society in both my town and my mother's and they have immediately come to visit me/my parents and have been really helpful. I find it easier talking to people who are not emotionally involved. Keep looking at TP and ask any questions you feel like, someone always has an answer, it is a life line whilst we are all going through this horrific illness....


Registered User
Jun 4, 2005

Hello,I know where you ae coming from,I used to waych football on TV,and at half time when the players left the field,Anna couldnt understand why I didnt rush around making tea for them!
You will need a lot of patience,love and understanding,hugs help.and we are always here for you if you want help and advice,or just to let off steam,I found TP invaluable,and I think you will too.
God Bless fredgt


Registered User
Jan 29, 2008
I suppose the thing I find the hardest to deal with about all of this is the unfairness of it all. My father died about 6 years ago now from Parkinsons disease. My mother (now aged 77) refused to allow him to go into a home and looked after him at home virtually until the end of his life (nearly 10 years).

During this time, very many "friends" and quite a lot of family stopped seeing my Mum and Dad. This has left her now in the situation where she is very lonely. The loneliness and isolation have added to the depression and only make the situation worse.

I have an older brother who is married with two grown up children. Despite living only 5 minutes away from Mum, he hardly ever sees her and certainly does virtually nothing to help her. I live an hour and a half's drive away and have three primary school age children. I also am self-employed and work for the hours that my children are at school.

When I return home I am met most days by 5-6 messages on the answering machine from my Mum. She always sounds so sad, lonely, confused and despairing.

Reading other people's posts on this site, I realise that I am not the only one to find myself in this situation and that does help greatly. I am taking my family to my Mum's house tomorrow as we are trying to go every fortnight to tidy up and redecorate the house in an effort to give her a bit of a lift. We will see what mood she is in and how the day goes?

Grannie G

Volunteer Moderator
Apr 3, 2006
Hello Honey.
I can see how upset you are about your mother and how sorry you are for her.
You sound as if you are bearing this burden alone. It hurts when family and friends let you down when you need them most, and it does seem to happen to so many of us.
All I can say is the people on TP won`t let you down. We all know the heartache of Alzheimers and are here to support each other.
You are trying very hard to make life better for your mother. I don`t think anyone could do any more.
Love xx


Registered User
Jul 10, 2006
south lanarkshire
Hi Honey

Would it be possible to arrange a befriender once a week or get your Mum to a daycare centre a couple of times a week?

SS or CPN should be able to arrange a befriender and daycare.

I think crossroads or admiral nurses may help, depending on your Mum's region/area

This may help relieve the boredom and lonliness, while also making sure she is OK.


Registered User
Mar 24, 2006
Co Durham
Dear Honey

As a person who has this, I can understand how she feels. It took my a long time to get to grips with it, but it is a times a living hell and unless you have got it I don't suppose you can really understand what people are going through, and that is not me getting at our carers and families, because I could never have imagined what this would be like to live with. I think my wife struggles at times but she is srong willed and that helps me.

I was diagnosed with early onset Dementia with Lewy Bodies when I was 56 and it still drives me up the wall at times, but I was young enough to change my life to get round some of the problems and the medication did the rest. The problem is that not everyone can get the medication because it just does not work for everyone, and we also all have different symptoms which must cause all sorts of problems to the Doctors.

As it has been said the Society does have a fact sheet which covers this illness and they are also in the process of publishing a booklet about Lewy Bodies, which will be out in the next few months. Lewy Bodies is one of the rarer types and therefore we know less about this than any other form of Dementia, but considering that there are over 100 different types of Dementia, it seems as if we are getting a lot more information coming through than many.
Keep talking to us and someone will always try to help if they can.

Best Wishes


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