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india, you wrote a message, but you didn't answer my question: how does the fact that the demented person thinks there is nothing wrong with himself (as only some demented persons do), make things harder for his relatives than it does for himself?<br><br><br><br>
I find it odd that you say you have studied dementia for 3 years, yet find facets of dementia to be "very hard to explain." I would think that by now you should be able to explain it to others, or you have wasted those years of study. I have seen excellent explanations in a number of places.<br><br><br><br>
Of course different people re-act to their own dementia differently. Many people suffering from dementia seem to realize this is the case, themselves, very soon after symtoms start. Others accept their diagnoses as soon as it is told to them. Others deny the existence of dementia, even after they are told they have it. Others realize they have it, even tho their relatives have lied to them or neglected to tell them the diagnoses. Others never realize they have it, you conceivably might have realized it, if their relatives had dealt with them truthfully. Still others are told they have one form of dementia or another by relatives or doctors, when in fact they do not have any form of dementia at all (no-one is ever told they simply have "dementia." For some reason, despite difficulty finding the cause of dementia, doctors like to say a person has "alzheimers" or demential related to a stroke, or a head injury, or dementia related to this or dementia related to that, or even schizophrenia, which they say presents as a syndrome that has dementia as its main symtom. Mistaken diagnoses as well as intentionally erroneous and misleading diagnoses, are not uncommon, either.<br><br><br><br>
Some people are simply born with dementia. Usually this kind of dementia does not "progress through stages."<br><br><br><br>
It wasn't awfully long ago that senile dementia was thought to be a normal consequence of aging. Many dementias that occurred in someone less than 65, and couldn't be attributed to something specific like a head injury, where therefore described as "dementia praecox" meaning simply "dementia that shows up earlier than it is supposed to show up." Later, after the idea started becoming popular that some people may not develop dementia in old age, anyone who had any early form of dementia that could not be attributed to something specific like a head injury, and started in adulthood or late childhood, rather than was something inherited or something they were born with, was described as having schizophrenia instead of dementia praecox.<br><br><br><br>
At the same time, schizophrenia started becoming a catch-all diagnosis for anyone whom authorities felt needed to be controlled or jailed, but who had not commited any crime for which jail was the punishment. Psychiatrists started becoming "thought-police." This enabled certain repressive societies to insist that they were "free" societies where freedom of speech was allowed, and no-one was jailed unless they comitted a crime, while at the same time jailing dissidents. They just pretended they were "helping sick people" instead of jailing dissidents. Never mind that they often had to use coercion against the "sick" people, or that "mental hospitals" became places where tortures that were no longer permitted in prisons, were common -- the cultural idea that sometimes sick people had to be coerced to take their medicine in order to get better, provided people with an illusion that the opressors were helping sick people rather than jailing dissidents. This goes on to this day. Not that there aren't people who really have dementia, and really needed professional care. But the history of the industrialized world includes the story of millions of people without dementia, being instiutionalized.<br><br><br><br>
That is why today, when people disagree with other people, instead of simply saying "i disagree with you" we still sometimes hear them saying instead "you're demented" or "you need psychiatric help." Using falsfied illness as a pretext for abuse, is embedded in informal language, and the fact that this kind of abuse was actually carried out, was thoroughly institutionalized as part of government and social systems, is where this kind of language came from.
 

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hehe i see soilman that you have done some research for yourself well done! I have had medical doctors tell me that they themselves still cant understand all the aspects of dementia, and they have studied for a hell of a lot longer then me, there are so many diseases that lead to dementia frontal lobe dementia etc etc so as you can see the general explanation is easy but to go into depth is quite hard, especially with someone that may have not studied, or worked with, looked after someone with a dementing illness..<br><br><br><br>
As for the first paragraph in your qoute have you ever been to see someone you love no longer able to remember your name, walking around with no clothes on, hitting, spitting at people, not stop repetative sentences or words, sitting in a chair with food all over them, the've urinated on themselves or put feaces all over the wall this is what im trying to explain to you that this is hard for a loved one to witness....<br><br><br><br>
As for a demented person not thinking there is nothing wrong with them, especially in second to end stage dementia they are in there own world!! They have no concept of whats going on..... I suggest that maybe with some of your free time you visit your local nursing home/dementia wing and go and talk to some residents with dementia they love nothing more then a chat, as you can read alot of information from a web page/book but nothing prepares you for the real thing........
 

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I have had several conversations with people suffering from various kinds of dementia, India.<br><br><br><br>
It is one thing to not understand something, and therefore be unable to explain it. It is another to understand something, attempt to explain it, but explain it in an unsatisfactory manner, due to lack of language abilities. It is the latter that seems to be the case here, with you. Yet it seems to me you are claiming that dementia is difficult to understand, and using that fact as a pretext for not making a satisfactory effort to explain what <b>is</b> understandable, and understood, about dementia; you are not making an adequate effort to word your thoughts and ideas and descriptions, in language that others can understand.
 

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I have had conversations with people that just didn't seem to be going right, but I couldn't put my finger on why; later a relative told me that they had dementia. This is the feeling, by the way, I get when trying to get information out of you. However I am not qualified to diagnose you. It could be that you are quite capable of explaining things well, but aren't willing to make the effot. In other situations I had been told the person had dementia, before conversing with them, or it was obvious when I tried to converse with them.<br><br><br><br>
The first situation i mentioned above: my neighbor across the street waved at me from her house and asked if I could help her with her electric stove. I saw that she had taken all the knobs off of her stove -- in order to clean behind them, she said (lots of people are very meticulous this way; I do the same thing). But first she said "some burners are on and I can't get them to go off." I checked them; they were all off. Well, that was better than her thinking they were off, yet me finding they were on! I got the knobs (they go on only one way), put them on, turned all the knobs to the "off" position. Then i touched each burner to make absolutely sure it was really off (just in case something more complicated was going on than usual). They were all ice cold. Then I said "they are all off." She said, upset and agitated, "no, some of them are on; can you please turn them off for me?"<br><br><br><br>
Now I was at a loss regarding what to do. I do not like to "humor" people who seem to be acting or speaking irrationally. Many people would have done that: fiddled around with the knobs, and said, ok you were right, but now they are off after I've done blah blah blah. I don't do things that way. I told her I don't think you have to worry about them being on; i think you are mistaken, I think they are all off. She still looked unhappy and agitated -- she looked like perhaps she was angry that I was lying to her! Tho of course I was telling the truth. But there was nothing I could do. I checked back a few hours later -- she had once again removed all the knobs. I simply asked her if everything was alright. She didn't answer. I just left again.<br><br><br><br>
Several months later I found out that she had had Alzheimers, from a relative who had moved into the house. I told him the little story about the stove. He thanked me for trying to help her, and remarked that there was nothing I could have done and that the confusion I described was a symptom of her Alzheimers. She had appeard rather normal in most ways, so I wasn't sure what had gone on with her stove, until her relative cited Alzheimers as the reason for her belief the stove was on, when it was really off.<br><br><br><br>
The contrast between her being meticulous about cleaning her stove, along with wanting to make sure all the burners were safely off, knowing that this was important for safety -- all signs of intelligence -- in contrast to her being unable to make a simple distinction between on and off along with her blaming <b>me</b> for the burners being on instead of off, because <b>I</b> was incompetant at turning them off -- -- was a bit disconcerting. However she did not threaten me in any way. She didn't say "I am going to sue you for attempting to burn my house down." She just pointed out angrily, but not threateningly, that <b>my</b> dementia put her at risk of having a fire.
 

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India, I spent several years as a volunteer patient advocate for people diagnosed with schizophrenia (Mental Patients' Liberation Project). People who wished to avoid being hospitalized; hospitalized people (locked ward) who wanted to get out. I have had conversations with hundreds of people supposedly suffering from this form of dementia. Frankly, I found most of them to be rather articulate, and to make no more errors in judgement than the average person.<br><br><br><br>
They sometimes make what <b>I</b> thought was an error in judgement , but a difference of opinion as to whether it was an error, would be arguable, reasonale -- there were no facts to prove them right or wrong. Such errors would not have been sufficient, in my opinion, to conclude someone was demented. Yet they were often used by their doctors to come to just this conclusion<br><br><br><br>
Many of these were people who had refused to take medication prescribed for them.<br><br><br><br>
Except in a few cases, I failed to understand why they were diagnosed as mentally ill. They were accused of having delusions, by their relatives, and by doctors -- but I didn't see any such delusions. While having a delusion that a burner was off, when in fact it was really on, was a delusion i could see (a problematic delusion, tho not a dangerous one), the "demential praecox" patients did not have this kind of delusion. There "delusions" amounted to things like "my husband doesn't really love me" whilst the person's psychiatrist was convinced the person's husband was very loving and caring. Or "I have pain in my vagina, uterus, painful periods" (or whatever) whilst a (very likely incomplete) evaluation of the person's reproductive system did not turn up anything wrong with it.
 

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I know I am late jumping in here, but how are you doing, Avalon?<br><br><br><br>
I didn't see this until today, so hadn't replied yet, but I witnessed my mother's decline (due to emphysema) and ultimately her death and it is an extremely difficult process. For me, I have a lot of regret that I didn't spend more time with my mom in her final weeks. I never thought (at the time) that I would feel this way after she was gone, but now I do. But everyone's different. I, too, was uncomfortable around her because she was so weak and hooked up to a machine and couldn't walk much or say more than a few words at a time without having to rest. I didn't know how to act around her and I was scared so I didn't say to her the things I should have or offered her my support the way that I think I should have.<br><br><br><br>
But, I was also only 23 and dealing with things the best way I could. I tell myself now that my mom knew this and knew that I really cared.<br><br><br><br>
As for your relatives, people get weird around sickness and death. They say and do stupid things. The only person you need to worry about is yourself. Don't forget to take care of yourself (glad you have a therapist).<br><br><br><br>
Thinking of you & your dad and wishing you the best.
 

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Avalon - I wished I could reach out and give you a big {{{HUG}}}! I know how terrible this situation is for you.<br><br><br><br>
Almost 2 years ago I lost my father. Not to ALS, but to a stroke. My father was larger than life and one of the smartest, funniest men I ever had the priviledge to know. Dad adopted me when he was in his mid 40's and my brother (not biological) 3 years later. When I was just 11 my mother died of a massive heart attack and dad had to take over. WHAT A JOB! I mean, here I was on the brink of puberty and I had only my father to go to! I can remember many a time that I turned his face beet red asking him for kotex, etc. (sorry guys!)<br><br><br><br>
Dad was out visiting me and my husband and 4 kids when he had a small stroke. I was there with my mom (actually, my step mom, but I have been with her since I was 13......so......she's my mom)and we took care of dad. Unfotunately, my brother and step-brothers never, ever helped out. I live on the East Coast and my the rest of the family on the west. I got a call in the middle of the night that he had a massive stroke. Dad lasted until I was able to get to California. I actually had to look at dad and he was just a mess. His eyes kept rolling back in his head, his tongue was hanging out and he would not make eye contact with anyone. This was the hardest thing that I have ever gone through before.<br><br><br><br>
And, I guess the reason I can understand your fear and upset is because it really hits you...........your parent is gone and now YOU are the adult. That means, you are now responsible for your life and all the decisions you make. No one is going to tell you what to do (even if you DON'T listen) and no one can be there to help you clean up your mess if you make a mistake. This is called the cycle of life............. and at one point - you're own children will do this for you.<br><br><br><br>
Avalon - all I can say is do what is right for you. You will be the one that is left behind after all is said and done. Don't let anyone, especially a family member, make you feel guilty about any decisions that you made. If you cannot visit your dad because you have work, school, etc.......then that is what you must do. Would your father want anything different? I am guessing not. If it makes you feel any less guilty, than think of it this way .......is this the way your father raised you? To feel guilty and let other people put their opinions and decisions in your head? I am guessing the answer to this is NO. Your father raised a child who has a good head on their shoulder, who can give unconditional love and who has a heart that is warm and giving.<br><br><br><br>
Hang in there.........we are all with you in spirit. And remember - only You know what's best for YOU!
 
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