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Dementia- Its the illness not the person


Registered User
Feb 19, 2009
Torquay Devon

At home yesterday because of illness,, whilst all were at memory café, it gave me time to think about things, not often I get a little time alone with my thoughts, and yes there were plenty of tears as well as smiles. If my psychologist was sat with me I should think I would have been admitted by now but happily she wasn’t and I am here to tell the tale so to speak lol. Admittedly many bad things came to mind, the night terrors, the hallucinations, the acts of myself that’s totally out of character and the anguish an pain this disease has brought my loved ones.
I refuse to say it’s what I have brought on because it’s not, it’s the illness, never in a million years would I act sometimes as I do and this is something I want to concentrate on in this short blog. YES ! I feel responsible for everything I do and say, but I cannot and will not try to forget that it’s not really me saying these things and doing something’s sometimes which I would, in pre dementia life ever do, I only wish others would remember that too.
I write for and advise on many forums across the world and one of the most common threads appearing is, Why does HE/SHE do this, Is HE/SHE doing this on purpose? Do “THEY “ know what they are doing when they say/do these awful things?? And most of all, DO THEY DO THIS JUST TO WIND ME UP?? All of these things need to addressed can be quite simply with the answer of NO. If someone has a diagnoses of dementia and I have to stress the “ Have “ a diagnosis of dementia no matter what type (in my case Lewy Bodys), or we go into a very grey area of quite simply behaving badly and being downright rude. Once diagnosed, admittedly it’s like a ticking time bomb; nobody can tell you exactly what’s going to happen as everybody is so different. Some go really quiet, some get louder and louder (No comment lol ) some, sadly, become violent and more aggressive and some not, but the one thing I would advise is , well, two actually, is firstly >>>>>>
Cast your mind back before the dementia come along, would he / she have acted like this?? Would they have been so awkward, so loud, so “Shouty , if there is such a word, or so rude?? I am betting the answer is NO and so there is your answer, it’s the ILLNESS and not the person, so please please, as hard as it is, try to remember this.
The second thing to remember is nobody but nobody is going to knock on your door and tell you the truth about what can happen when someone has dementia, absolutely nobody, as believe it or not it’s stil,l even in this day and age, something that’s whispered about in certain countries. You!! yes YOU have to go out there and find all this out, no it’s not fair, and no its shouldn’t be that way but sadly it is, but as they say you wouldn’t go to war without knowing your enemy would you !! Which, is quite apt in this day and age.
I hope this piece has helped and always remember the Purple Angel campaign is always here to help you no matter where you are in the world, dementia knows no boundaries, then why should, we ??
Love to all,
Norrms 27th March, 2022
Diagnosed with dementia so long ago now I can’t quite remember when xxx
Please feel free to share


Registered User
Oct 28, 2019
Thank you @Norms. As a carer for my husband who also has Lewy Body, I sometimes forget what he was like before the diagnosis. You have reminded me that it is important not to lose sight of that person.
I think you are amazing, you are aware that your hallucinations are not real, unfortunately my husband is convinced that his are real which makes life difficult at times but as you say - it is the disease not the person.


New member
Dec 28, 2021
Thank you Norms, no it is not the person and no matter how often i feel tired supporting Mum on her journey that is always in the back of my mind. I'm not a perfect carer or a perfect person by any stretch of the imagination, but who is? I'm constanly searching for information and ways to make things easier for her. You are so right about people not knocking down doors to advise us. However difficult this is for those who care I always try to remember how much more difficult this must be for Mum x This disease is the reason for any difficulties we experience on this journey x thank you again for your post x


Registered User
Aug 11, 2021
@Norrms , many thanks for this frank piece of writing. I think that the lack of education about dementia is ytuly shocking. I do understand that every person is different and how the disease affects people differs too.

I have tried so hard to be the best wife and carer possible but I am human and know at times I have questioned my husband’s responses. That was in the early days ... I soon appreciated that he would not put things on or try to wind me up.

One of the most difficult things has been the lack of knowledge I have about what he is thinking about this disease. You clearly have insight and I wonder if he has too. I guess I will never know.

Although he is now in residential care I visit most days and I am still his wife and want to be with him and most importantl6 to try to help.

I thank you for your plain speaking. I have so much respect and admiration for you. Take care x