Does someone with dementia and/or who is mentally incompetent realize that something is wrong with their thinking, memory, etc.? - AgingCare.com

Does someone with dementia and/or who is mentally incompetent realize that something is wrong with their thinking, memory, etc.?

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or does it feel normal to them? Does anyone have any insight as to what it feels like to have dementia and/or be mentally incompetent? Are they in emotional pain, or are they perhaps enjoying their life?

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My mother had Creutzfeldt Jakob Disease, which causes RAPIDLY progressive dementia and is always fatal. When she received her diagnosis in December 2016, she understood the prognosis. Within a few weeks, she appeared to have forgotten that she was sick. However, there were times shortly before she became bedridden (in June 2017) when she would get teary and would express "how hard this is". I understood her to mean that she recognized how far she had declined in her ability to function. By that time, she often expressed that her husband of 56 years (my dad) was her daddy; she was incontinent, could not feed or dress herself, and had to be transferred from bed to wheelchair by 2 aides. We had been told she would eventually become unaware of anything around her, but she didn't completely lose touch until the last 5 days of her life, when she became semi-comatose. She passed away on July 15, 2017, six and a half months after her diagnosis. She was 77 years old. Everyone's experience with dementia is different, but this was ours. When she was aware of what was going on in her brain, it was very distressing to her.
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Reply to funnymomof3
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Several months ago my wife ask "what is wrong with me?" I told her she had dementia. She was diagnosed just over two years ago. I think she knows what is wrong but may not understand it.
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Reply to OldSailor
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My Mum’s the same. She said the Doc told her she has an excellent memory, he didn’t, but she has convinced herself that’s what he said.
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Reply to HelenG1970
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Hi Whitney,

Mom got her diagnosis of vascular dementia about a year ago; then some weeks later the Alz. disease was confirmed. The family knew for several years something was wrong. Mom kept repeating herself over and over, asking the same questions, losing stuff, putting stuff in weird places, up all night going through cupboards, sorting through trash, rummaging through other people's personal stuff (which I don't think she used to do). Irrational fits of anger. Extreme paranoia.

When she first got the diagnosis she was in early-to-mid stage, approximately stage 4 with some elements of stage 5. She mourned her diagnosis at first: "Why is this happening to me?" "I wish I could die," etc. but you could actually discuss her condition with her.

As the weeks went by her dementia worsened, even with Aricept and Namenda. Ever so gradually, Mom lost her grasp of reality, insisting it was I and not her that had dementia! A couple of months ago she was worked up by a neuropsychologist who staged her at moderate to moderately severe dementia (5 to 6 on the Reisburg scale). She was taken off the Aricept because the side effects were worse than any benefit we could see, but kept her on the Namenda. I never reference her disease as "Alzhemer's" or "dementia" any more. Big mistake. She will really fly off the handle, insisting she has no such thing. On the other hand, she still says she wishes she could die, which is really sad. She was started on Lexapro for anxiety and depression about a month ago. It seems to have helped some.
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Reply to CantDance
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I am in my mid 40's which would be uncommon to have mental disease or dementia however I am convinced something is going on while my doctors seem to think it is just anxiety and depression. Its pretty frustrating not knowing if something is wrong or not. I do over think a lot about so many things and maybe I just get mentally sidetracked making my mind wander and forget the small stuff however it is equally concerning.

I have always had minor small slips mentally however now I have just the repeated simplest things that haunt me daily like only remembering to turn the heater off because I hear it running not because I recall turning it on or walking into a room and forgetting why. I usually remember why however it takes me a few seconds. I know it seems normal on some levels, its just the frequency that worries me. I have twins almost 13 now and for me it's all about them. Saddens me to think one day I would be here physically however not mentally for them. We are so close.

Honestly don't know that staying alive for loved ones without mental recollection is better than passing away from something more sudden. Mental illness seems to be nearly the saddest of them all beyond sick children.

Anyway my answer is unless someone went past mild dementia so fast that they didn't get the chance to absorb these types of symptoms then I believe there must be a few years that they absolutely know something is going on. 
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Reply to Doubleup
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Lewy Body Dementia is known for its cognitive fluctuations, and I think that most people with that kind of dementia do recognize their impairments during their lucid periods. That isn't necessarily always a positive thing!

In an early lucid period my husband said, "I took good care of my heart all these years for THIS?!! My brothers got to die quickly of a heart attack. I exercised and ate right and saw my doctors and took meds so that I get to lose my mind slowly! I envy my younger brother who died while tying his running shoes."

Not everyone is articulate enough to express this thought, especially after dementia sets in, but I suspect it is a common way of thinking.
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Reply to jeannegibbs
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sandwich42: Sounds exactly like my mother. She won't use a walker, she won't take any help from any of the aides at AL. They all had to back off because anytime they tried to help she shut down completely. All she keeps saying is "I never thought this would happen to me" She won't do a thing to help herself or let anyone help her. So we are paying for AL for wonderful people to help her, and she stays in her room like a shut-in.
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Reply to AmyGrace
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I forgot to add...
My mom thought the rest of the world was the problem, not her declining condition. Everybody in 10 miles was Stupid, Idiot, Jerk, and some things I can't print here. Not once did she ever attach her frustration with her conditions.
The doctor was just a "stoop" (stupid). She's always said it that way, so I can't blame dementia.

She never educated herself on her diagnosis so many years ago. She ran from it, thinking she could out run it, which is foolish, but typical mom. She had no idea what to expect, so she didn't recognize change in herself, the house, or her habits & abilities.

She to this day insists that everything happening is completely normal and nothing has changed except that she lives in this weird "house" (memory care ward) that has holes in the floor (her vision deteriorating) and dog that meows when it's not a cat barking (misinterpreted visual stimuli).

I think it was a generational thing or a regional thing because mom's older & younger sisters are exactly like this. Completely out of touch with the aging process.
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Reply to sandwich42plus
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My mother was in the deepest parts of the River Denial possible for 15+ years until she couldn't cover up anymore.

She would not take any help either, even to the point of putting herself in danger. She would rather everyone in the community believe she's a weird old kook than an elderly lady in need of help with the activities of daily living.
Her sister is the exact same way. Better to be a shut in than let somebody in town see you with a cane or walker. I don't get it.

I want flames painted on my canes & walkers. My scooters & wheel chairs. I'll carry a bull horn with me to shout "get out of the way! Here comes granny!"
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Reply to sandwich42plus
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assandache7, same here even though neither of my parents have dementia, that could easy change in a few months.... I rather be overly prepared then be surprised. Now when my Dad forget things, instead of me getting totally frustrated with him, I only get half frustrated :P
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Reply to freqflyer
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