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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?

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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When we were at the neurologist last month, Dad was given the diagnosis of "Alzheimer's type" dementia. Inevitably, the subject of driving arose. My dad insisted that he could still drive, and the doctor explained that it wasn't his driving skills per se; but the memory issues that could contribute to an unsafe situation on the road. Dad still insisted he was fine and could drive. The neurologist gently stated, "The problem is when we don't realize there's a problem."
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Reply to Drummergirl
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My mother has known she is forgetful for several years. Sometimes she says "I'm losing it". She doesn't know how bad it is and that she asks the same question 5 times in a row, every day for months though. And when she doesn't remember a visit to the doctor, etc, she refuses to accept it and denies it. She isn't aware of the strange things she does, to her, they seem normal. If she realizes its worse, she won't admit it and is in denial, big time. She is fighting old age tooth and nail. She refuses help of any sort. She has always had this "ego" thing going that she is more concerned with how "it looks" than she is getting help. She will let my sister and me help her, but no one else.
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Reply to AmyGrace
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I agree with all.. I know that if I didn't educate myself about dementia I would be in a state of anxiety 24/7...
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Reply to assandache7
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My husband, Lewy Body Dementia, knew and understood his diagnosis from the beginning.
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Reply to jeannegibbs
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Early in Mom's dementia, she knew something was wrong, probably started in about 2002 or so. She was complaining about forgetfulness. Finally in 2005 she was diagnosed with dementia and became so angry that she called the doctor a quack and stormed out of the office. Now in her late middle or early late stage she is content much of the time but still has those moments. One tonight was her asking if her folks were dead. When she asks that way I answer that they would be 115 years old. She then becomes concerned about whether she went to their funerals. And wonders why she didn't know that. Then comes the gentle talk that her brain just does not remember things the way it used to. Usually she is accepting of it without too much fallout. And one of my sibs when I told her about Mom getting tearful when she just found out her parents were gone, actually diagnosed her witn depression. Sissy does not understand dementia in the least. Sometimes Mom's brain really thinks this is the first time she heard about her parents passing. Such a strange disease.
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Reply to gladimhere
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As far as dementia goes I think they definitely know something is wrong in the early stage. I have no doubt that this awareness is some of the main reasons for the anger and depression so many dementia pts have. It appears that this awareness fades as the disease progresses.
As for a mentally incompetent person that's a different story. There are many reasons for mental incompetence. Dementia is just one of the many causes. So to say that a mentally incompetent person is aware that something is wrong is not necessarily accurate, it depends on the cause of the incompetence. An example of another cause of mental incompetence would be psychosis related to schizophrenia or bipolar disorder. In this case most of these folks are unaware that their thinking is off. Hope this helps.
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Reply to Nojoy3
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In the early stages of my Mom's age related dementia (95!) she would comment about forgetting things and not doing things correctly. I told her we would help her and not to worry about it. As time passed, those comments went away. You might read 'Still Alice' or view the movie for an example of early onset ALZ.

During my Mom's journey, she visited with (long deceased) brothers and sisters. She was suck in her late teens/early 20s. Hadn't met my Dad yet so he (also long deceased) was never mentioned . My Mom was always a kind 'lady' but helping her stay in HER present I believe helped her. She described her new cars and vacations to me in vivid detail. I thought she was having (for the most part) a reasonable life. She spent her final years in a memory care center and told me stories of her adventures. She enjoyed telling them and I enjoyed listening. I urge everyone to 'go with the flow'.
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Reply to geewiz
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The other day I was at my mothers (she has moderate dementia) sorting through junk mail and bits of paper (she hides keys, money, bits and pieces amongst the papers, so I check it before tossing it) she repeatedly was putting things that I had sorted in different places (not sure why). The whole thing was confusing me and adding to my anxiety, she noticed that I took a big deep breath and said "you should trying me for a day". I was astounded and realised that she is aware of her condition at times, it made me feel so sad for her.
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Reply to Doriana
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The elderly woman I care for has no clue she has moderate dementia. She reads or hears about it and says, she hopes whenever gets that. Her brother had very bad dementia and just recently passed away. She says she thanks God she doesn't have it too. 😔
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Reply to ellelenn
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There is an angry phase, where they know they are losing it and it's going to get worse. That's when you ask for anxiety meds. If they become depressed, you add in SSRI's like Zoloft or Celexa. As dementia progresses, they forget what they are mad about and become more docile and dependent.
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Reply to pamstegma
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Whitney, I've always wondered about that, what is going on in the mind of someone who has Dementia/Alzheimer's.... what are they thinking?.... if one of doing something that doesn't make sense to us, does it make sense to them?

My Dad has age related decline at 93, so his mind isn't as sharp as it use to be.... and I found it interesting the other day when he admitted that he's not thinking as quick as he use to, that it must be his age. Heck, it takes me longer to remember names of people, and sometimes it will be at midnight when I do recall a name :P

My boss's wife had Alzheimer's for 15 years, but he had noticed that a few times a day his wife would be *in the moment* where he could ask her a question and she would answer him. It's kinda like the brain is in a loop but that loop is damaged except for a very tiny moment where it is clear.

Too bad there isn't someway we could see what it is to have severe memory loss through the eyes of the person who has that loss.
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