From reading some post/threads ive been amazed (in my ignorance) that some dementia sufferers have awareness that they have this disease. Is this the same for all? My dad had dementia for a long time before it was diagnosed and as far as i know he never once asked or talked about it. The only time i had an incling that he may have known was a few weeks after he went into CH almost 2 years into his illness. He sat one night and clear as day said to me "i didnt know i was daft" have i always been? I must admit at the time i laughed. I wondered what he meant but didnt know how to answer. Ive always thought he didnt know, but now im wondering if he did. Im also surprised that some people can still drive, shop etc. With my dad it seemed like he just switched off one day, there was no meds,scans,cpn nothing. His behaviour,demeanor,aggression,confusion and more was evident to me, but im sure not to him. How long can a sufferer continue to go about his/her daily lives before the awareness goes? Is there a timescale? Does it happen to all or just some?
awareness
- Thread starter chucky
- Start date
Ken never showed any awareness of his behaviour and in truth I think much of the time he was in a strange, obsessed world and couldn't tell what was real in his life.
He has been telling me for some years that he is frightened. When I say that I know and it is because he is confused, he looks at me in amazement that I understand and says 'Yes that's it. I'm confused'. It is so sad, so very sad.
xxTinaT
He has been telling me for some years that he is frightened. When I say that I know and it is because he is confused, he looks at me in amazement that I understand and says 'Yes that's it. I'm confused'. It is so sad, so very sad.
xxTinaT
Hello, from reading posts I believe that many people may be aware that something is wrong. I don't think you can put a timescale to it as everyone seems to be so different.
We noticed things were wrong along before my FIL admitted anything to us. In fact it was only about a year ago that he said one day that nothing made any sense anymore. I think he knew before this but would not talk about it. For such along time he sat in his chair, often refusing to talk, and we wonder if he was trying to work out what was wrong but afraid to put his thoughts into words.
It is very, very sad.
We noticed things were wrong along before my FIL admitted anything to us. In fact it was only about a year ago that he said one day that nothing made any sense anymore. I think he knew before this but would not talk about it. For such along time he sat in his chair, often refusing to talk, and we wonder if he was trying to work out what was wrong but afraid to put his thoughts into words.
It is very, very sad.
It's so true that TP has opened my eyes, possibly more now that I would wish, as it's too late for me and my mum. I also read posts by carers and by sufferers, (which are the most eye-opening) about an awareness I now wonder if mum would have had.
It saddens me that she was struggling with fears, all alone, and with nobody to comfort her. She had been going "downhill" for a while and we thought she was just grumpy, or sulky, or just irritated with dad. So many things now make sense, and a large part of me questions if I was in denial myself and not wanting to face my fears either. For that I feel like the most selfish daughter in the world.
She must have been so scared. I do know one thing, and that is that IF she had a greater awareness than I knew of, then she would have done anything to protect us, her family. It was her sole reason in life to look after us. She was an amazing mum. So with that knowledge, it was easier for us to allow her to do that, and that same large part of me that may have been in denial, was also being the scared daughter who needed protecting.
I hope she didn't know. I hope it was just "happening", but we never spoke of it. We were also trying to protect her. Acting normally, reassuring her if she couldn't remember something. Just simplifying everything without discussion. But since clearing mum's house, we have come across little signs that she was aware. There are loads of pieces of paper with repetitive words, names, numbers on them. It's like she was testing herself, maybe even trying to fight, but why would she if she was unaware. But I'll never know...She's in a Nursing Home now, and cannot speak. She cannot walk, talk or feed herself.
She seems content, and in some ways, being "the other side" of the illness, she hopefully isn't scared or aware, but occasionally her eyes suggest otherwise. Those times, I'm desperate to ask if she's ok, does she know what's happening, does she understand why she's not at home, like I promised? But it's too dangerous to ask. It's far kinder now to just smile and reassure because the moments (the eyes) are fleeting and short, and I like those moments to be filled with calm and happiness. She can then soak it all up and fuel herself for the harder times.
Sad doesn't even begin to sum it up...does it? xxx
It saddens me that she was struggling with fears, all alone, and with nobody to comfort her. She had been going "downhill" for a while and we thought she was just grumpy, or sulky, or just irritated with dad. So many things now make sense, and a large part of me questions if I was in denial myself and not wanting to face my fears either. For that I feel like the most selfish daughter in the world.
She must have been so scared. I do know one thing, and that is that IF she had a greater awareness than I knew of, then she would have done anything to protect us, her family. It was her sole reason in life to look after us. She was an amazing mum. So with that knowledge, it was easier for us to allow her to do that, and that same large part of me that may have been in denial, was also being the scared daughter who needed protecting.
I hope she didn't know. I hope it was just "happening", but we never spoke of it. We were also trying to protect her. Acting normally, reassuring her if she couldn't remember something. Just simplifying everything without discussion. But since clearing mum's house, we have come across little signs that she was aware. There are loads of pieces of paper with repetitive words, names, numbers on them. It's like she was testing herself, maybe even trying to fight, but why would she if she was unaware. But I'll never know...She's in a Nursing Home now, and cannot speak. She cannot walk, talk or feed herself.
She seems content, and in some ways, being "the other side" of the illness, she hopefully isn't scared or aware, but occasionally her eyes suggest otherwise. Those times, I'm desperate to ask if she's ok, does she know what's happening, does she understand why she's not at home, like I promised? But it's too dangerous to ask. It's far kinder now to just smile and reassure because the moments (the eyes) are fleeting and short, and I like those moments to be filled with calm and happiness. She can then soak it all up and fuel herself for the harder times.
Sad doesn't even begin to sum it up...does it? xxx
different forms of dementia
hiya chucky, there are so many different types of dementia, and it affects every one differently.
depending which part of the brain is damaged. alzhiemers for example affects the back of the brain that affects memory peoplr are aware that they are forgetfull
multi infart or small strokes damages the brain in a slow but continual pattern. in this type of dementia the sufferer may realise that they are not quite right.
with frontal lobe dementia, that attacks the reasoning part of the brain, in general it is the behavior not the memory initially that is affected. they lack the insight that anything that anything is wrong with them.
that is why a diagnosis is important, cos it helps us to understand what is happening to the person. sadly all dementias lead to the brain dying and dementia sufferes becoming dependant on other for their every day care, hope this helps janice
hiya chucky, there are so many different types of dementia, and it affects every one differently.
depending which part of the brain is damaged. alzhiemers for example affects the back of the brain that affects memory peoplr are aware that they are forgetfull
multi infart or small strokes damages the brain in a slow but continual pattern. in this type of dementia the sufferer may realise that they are not quite right.
with frontal lobe dementia, that attacks the reasoning part of the brain, in general it is the behavior not the memory initially that is affected. they lack the insight that anything that anything is wrong with them.
that is why a diagnosis is important, cos it helps us to understand what is happening to the person. sadly all dementias lead to the brain dying and dementia sufferes becoming dependant on other for their every day care, hope this helps janice
My Mum has known for the past three/four years since she was diagnosed and we have talked about it thoughout.
Up until recently we have discussed how she is perceiving things that don't seem right and she has described her feelings and worries to me and asked me what was real and what hasn't been?
I think up until a month ago, I was quite honest.
There are times when I told her hey, this is a real feeling because she has had amazing perception throughout. But, there has also been times when I have had said, I think this is the disease playing tricks with your mind.
We have discussed her fears, there has been many times when she has told me in utmost clarity what is happening in her world hour by hour...
I have cuddled, reassured her and felt for her. I think she has been very aware of what has been happening. Perhaps, that is what is so difficult for me now because I have for now) become the enemy. But, then perhaps I should also be grateful that we had that quality time even in bad circumstances.
Up until recently we have discussed how she is perceiving things that don't seem right and she has described her feelings and worries to me and asked me what was real and what hasn't been?
I think up until a month ago, I was quite honest.
There are times when I told her hey, this is a real feeling because she has had amazing perception throughout. But, there has also been times when I have had said, I think this is the disease playing tricks with your mind.
We have discussed her fears, there has been many times when she has told me in utmost clarity what is happening in her world hour by hour...
I have cuddled, reassured her and felt for her. I think she has been very aware of what has been happening. Perhaps, that is what is so difficult for me now because I have for now) become the enemy. But, then perhaps I should also be grateful that we had that quality time even in bad circumstances.
It was different for us again. My husband was diagnosed a year ago with AD and his scan showed significant overall shrinkage of the brain with prominent CSF spaces (not sure what that bit means). I knew for sure at least 2 years before that that there was a problem but he wouldn't discuss it at all and refused to see a doctor - now I think he managed to hide his problems for a long time before that because he was scared of the probable diagnosis. It must have been exhausting for him to battle on like he did and I do wonder if he'd gone for early diagnosis whether he'd be better than he is now with early intervention and medication
Dear ChrissyM,
Such a touching post. I wish I could have been there for my mum in that way. I know if we'd known (she'd known?) that I could have been.
Hindsight. Knowledge. Insight. If only...
But under the circumstances, it is what is is, and I wouldn't wish to start over again but I if I was back there, knowing what I know now, I would have spoken with her more and given more cuddles too. I was frightened and I should have put her fears before mine.
Although it seems strange to say this, you're lucky you had this time with her and this closeness. We all of us, here, face the disease, but you did it together. I felt mum and I faced it together, but apart.
You sound like a wonderful daughter.
Such a touching post. I wish I could have been there for my mum in that way. I know if we'd known (she'd known?) that I could have been.
Hindsight. Knowledge. Insight. If only...
But under the circumstances, it is what is is, and I wouldn't wish to start over again but I if I was back there, knowing what I know now, I would have spoken with her more and given more cuddles too. I was frightened and I should have put her fears before mine.
Although it seems strange to say this, you're lucky you had this time with her and this closeness. We all of us, here, face the disease, but you did it together. I felt mum and I faced it together, but apart.
You sound like a wonderful daughter.
Thanks guys for your replies. Its amazing that one illness can come in all guises and affect people in so many different ways. It makes you wonder if they will ever find a cure for this. Not in my lifetime maybe but hopefully for future generations. I pray they do. xx
Hello Chucky
I think my mother knew years before we the awareness of what was happening to her was thrust on the rest of the family.
We have been clearing her house recently to sell it and have found millions of little notes written to herself with her address on, that of her childhood home, all the family's telephone numbers, addresses, that sort of thing, all over the house. Then there are quite a few books on training your memory, managing memory loss, etc.
So yes, I think she did know what was happening but she never talked about it except to say "I can't seem to remember things these days" just a few months before she was diagnosed.
I wish she'd shared her fears with me, I feel guilty that I didn't realise how things were going for her.
R
I think my mother knew years before we the awareness of what was happening to her was thrust on the rest of the family.
We have been clearing her house recently to sell it and have found millions of little notes written to herself with her address on, that of her childhood home, all the family's telephone numbers, addresses, that sort of thing, all over the house. Then there are quite a few books on training your memory, managing memory loss, etc.
So yes, I think she did know what was happening but she never talked about it except to say "I can't seem to remember things these days" just a few months before she was diagnosed.
I wish she'd shared her fears with me, I feel guilty that I didn't realise how things were going for her.
R
Hello R, please dont feel guilty about not knowing.I didnt know what dementia was as i'd never experienced it or known anyone who had it. All my life i'd heard people talking (and joking) about going senile but it never ever registered with me. It was a thing as teenagers(in complete ignorance) we talked about when discussing old people. I was overwhelmed with the experience i had with my dad before he was diagnosed and even then dementia never entered my head. I had no idea what was wrong, i just knew he wasnt well. Hindsight is a wonderful thing, had we known then we would all have tried to do things differently. I still have no idea whether my dad knew or knows now, and thats why i was curious. Your mum may have been aware but not fully understood what was happening herself and from what you've said it sounds like she was a loving mum who didnt want to burden you and the family. A natural instinct for a parent. Im sure your mum, despite her memory problems, was fully aware that you loved her and thats something dementia can never steal from you. You have no reason to doubt yourself, there is nothing to be guilty about. Take care xx
Hi Chucky
Yes it’s true that some of us like myself that was diagnosed 6 years ago with ‘mixed dementia and Alzheimer’s’ can be aware of our condition and can actually be aware of the daily affects and of our conditions slow deterioration… personally I think a lot of this is to do with how early the illness was first diagnosed and how soon the person is prescribed the special medication which in my case I was immediately prescribed (Aricept) that is helping my daily life immensely…
Many people also think that because some who have Dementia ‘BUT’ are unable to respond or communicate in any way are totally unaware of their condition, yet this might not be the case as the feelings and awareness might be within that person but their just unable to communicate it to others…
Yes it’s true that some of us like myself that was diagnosed 6 years ago with ‘mixed dementia and Alzheimer’s’ can be aware of our condition and can actually be aware of the daily affects and of our conditions slow deterioration… personally I think a lot of this is to do with how early the illness was first diagnosed and how soon the person is prescribed the special medication which in my case I was immediately prescribed (Aricept) that is helping my daily life immensely…
Many people also think that because some who have Dementia ‘BUT’ are unable to respond or communicate in any way are totally unaware of their condition, yet this might not be the case as the feelings and awareness might be within that person but their just unable to communicate it to others…
Hello Barry, thanks for your reply. Can i just say its so good to hear how dementia does affect you from someone that knows first hand. I am still so ignorant in a lot of ways about dementia, but to be honest i find it upsetting when i try to learn more and find out things i'd rather not know. I always think of my dad as being lost in another world where everything is carefree and comfortable and that he has no worries or fears. To find out that some people, yourself for instance, are not only aware but understand, and can still speak, type, shop, drive etc and live a reasonably normal life has amazed me. I still have trouble understanding that its possible, as my dad (seemed) to just switch off one day and that was it. In hindsight i was probably too stressed out to notice his deterioration as im sure it doesnt just strike you down instantly. Thank you for the info you gave me and i hope you continue to keep well. Take care xx
My mum was not a thinker, a bit "thick" really. But when told she had memory problems cos her brain was damaged, she said, simply "So I am doo-lally then" and seemed to think that was okay.
But she wasn't doo-lally in lots of things. She could still tell me about her parents and grandparents, and her sisters.
But it didn't bother her that she was doo-lally.
It bothered me!!
Love
Margaret
But she wasn't doo-lally in lots of things. She could still tell me about her parents and grandparents, and her sisters.
But it didn't bother her that she was doo-lally.
It bothered me!!
Love
Margaret
Oh, gee, I just read what I had written and burst into tears. My poor little mum learning that she was doo-lally. Bless her cotton socks, what a star, eh? She was never an ounce of trouble to me compared to what some of you poor folks have to contend with. Wasn't I lucky?
Margaret.
Margaret.
I used to find myself in a dilemma when it came to the issue of my mother's awareness of having Alzheimer. On the one hand wanted her to know because then she could make more sense of the demands that were being made on her, i.e. that she should be in a care home, , yet on the other hand I really didn't want her to know because who would not be terrified knowing that they had a hideous degenerative brain disease? And like you with your father I found it hard to gauge how much she understood. However as someone who practices meditation and is interested in awareness and think that people in general (well or sick) go in and out of awareness throughout the day. The mind is always moving and changing and thoughts pass through, sometimes we are aware of them sometimes not. I found that my mother's cognition was in a constant state of flux, as were her emotions, and she also had a fluctuating awareness of her condition right up until the end. The one thing that lessened the distress of seeing my mother's mind fall apart was knowing, or feeling as if I knew, that there was something quintessentially her that remained, even when we couldn't talk.
Like Florence I look back and wonder just what my mum realised and when her alzheimers actually started.In her forties and fifties she had depression, anxiety and paranoid incidents. Our relationship had never been good and as a teenager and young adult I found her behaviour really difficult especially as at that time there was no support. Now over 30 years later with Mum in care home for over 4 years and obviously ill with alzheimers for 10 years I wonder if her earlier behaviour was the beginnings of this illness. Another aspect of the guilt monster.
Also I do not think Mum ever realised or recognised that she had alzheimers even though all her older siblings also developed it. She at one time used to ask what was wrong and we would say "it is just your memory" which seemed to comfort her. Now she only occasionally indicates that she has awareness that she is ill.
Also I do not think Mum ever realised or recognised that she had alzheimers even though all her older siblings also developed it. She at one time used to ask what was wrong and we would say "it is just your memory" which seemed to comfort her. Now she only occasionally indicates that she has awareness that she is ill.
Dear ChrissyM,
Although it seems strange to say this, you're lucky you had this time with her and this closeness. We all of us, here, face the disease, but you did it together. I felt mum and I faced it together, but apart.
You sound like a wonderful daughter.
Dear Florence, what a lovely reply and I meant to answer before this. I am not a wonderful daughter, I am simply me. There were a lot of reasons why this route was taken and perhaps some of the reasons I reached out were because of circumstances that happened preceding. However, you are right we have had a lovely closeness despite all things for which I can only be grateful.
However, there is not one person on here dealing with this that is not special. It doesn't matter how you dealt/deal with it...only that you care! I am convinced that there are no rights or wrongs .....
@ Christine above, I also really understand your post because that was me too. I was an awful teenager and rebelled constantly! We have not had the easiest of relationships over the years but perhaps a good thing that has happened for me is that I have gained a bit of understanding into why I was so rebellious and now I make an effort even if I feel it not to show it.
I am amazed at the number of people in here that are saying that their loved one suffered from depression first ~ that was certainly the case for my Mum and it makes one wonder if it is part of the same thing or perhaps people who have suffered depression are more prone. How sad really...
As for the rest that worry about telling...I seriously think that a caring judgement is the best you can do.
When I was talking to a good friend recently...he told me, do your best and nothing else is really important
Yes I thought Florence's reply was lovely and thank you also Chrissy M for your response. I do not often post now on TP although I read regularly. I posted partly because this week has been for some reason very emotional - mothers day combined with other worries. I was in tears in our local shop because when I bought a mothers day card the shop assistant was so kind to me when I mentioned Mum had alzheimers.Also Chrissy your posts have echos of my situation 6 to 8 years ago. I have memories of being phoned or even visited at my work place to solve the insolvable problems of alzheimers. I only hope you can manage the balance off caring for both parents more successfully than I did. It took enormous amounts of my energy for many years although I never took on the day to day care. That would have been impossible given our family dynamics. I did try my very best to get my parents the very best support available. The results were not what I hoped for. I am sure you will be more successful.I am convinced most people do the best they can at the time in most situations.
At least now Mum is looked after and I worry less about her but it is still a horrible way to spend your final years.
On depression I do wonder about the link and also remember reading a book by a well know psychologist who touches on the link between depression and this disease. However like so many alzheimers theories I suspect more research is required. So many people suffer from depression that I suppose some are bound to develop alzheimers as well. My Mum also had paranoia about 8 years ago (convinced I,, with my son had stolen all her sheets) and it did remind me very much of her behaviour 30 years earlier.
Sorry not very cheerful. As I say it has been an emotional week.
It is good to have the contact of others who understand on TP.
Wishing you all the best.
At least now Mum is looked after and I worry less about her but it is still a horrible way to spend your final years.
On depression I do wonder about the link and also remember reading a book by a well know psychologist who touches on the link between depression and this disease. However like so many alzheimers theories I suspect more research is required. So many people suffer from depression that I suppose some are bound to develop alzheimers as well. My Mum also had paranoia about 8 years ago (convinced I,, with my son had stolen all her sheets) and it did remind me very much of her behaviour 30 years earlier.
Sorry not very cheerful. As I say it has been an emotional week.
It is good to have the contact of others who understand on TP.
Wishing you all the best.
I hope things improve for you Christine, those emotional weeks are so draining and of course many of us are not just dealing with the issue of Alzheimers. Inevitably there are other concerns in our lives that run along side. Like you I do more reading than posting, I am not too good at sharing my feelings and can often only accomplish it when I am over the worst. The worst is where I am running around like a headless chicken with frantic thoughts and getting nowhere fast! The only way I can function then it to take myself out of the situation for a short while and sit among nature which, does it for me...however, the first hurdle is recognition that my state of mind needs addressing and some time to do it.
Sending you and anyone who is feeling emotional right now hugs and flowers.
