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 Do you tell your Loved One that he has Dementia? 
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Joined: Tue Apr 13, 2010 2:43 pm
Posts: 4
Location: Wash St
Post Do you tell your Loved One that he has Dementia?
My husband constant hallucinations and frequent episodes of thinking he is somewhere else (which last for over an hour.) For example, he woke up yesterday and thought he was at a former work place, was seeing people he worked with, and it took about an hour for him to realize he was in his own home. Also, we were watching TV last night and he asked what the "plan" was; after questioning him, he thought we were somewhere other than home and thought we should be leaving soon..

When he realizes that he is home, he remembers these illusions and thinks he is going crazy. I hesitate to tell him that he has Lewy Body Dementia along with Parkinson's because I think the word dementia will put him into a depression. I usually just tell him it is the Parkinson's that is causing this.

Could some of you let me know if your spouse or parent actually know they have dementia??

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MJ-Camano


Wed Apr 14, 2010 11:51 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Very good question Mary Jane, and one I ask myself constantly. I have chosen not to mention the word dementia for the very same reasons. My dad is already frustrated, scared, angry and depressed so I too am afraid mentioning the word will just put him over the top! So, last week we had this very frank discussion where I said "You have Parkinson's disease and it is causing various kinds of problems. That's why you can't hold any weight with your legs, and why your arms are so weak and you can't sit up by yourself. There's a lot going on and I will make sure you get all the medical care that can be done to help you as much as possible with your health issues."
His reply was "I am in very bad shape." I agreed with him and told him again I was doing everything I could to help him. That seemed to satisfy him. At this point, we don't even know if he has Parkinson's, but since that was one of many guesses the drs. had until recently, and it was something he could relate to, it doesn't really matter what he does have. He accepted my answers so maybe you can try something like that.
I'm sure others will have some ideas for you too. If I thought it was in his best interest to tell him he has dementia I would, but I think it would be worse for him so for now I will not say anything. Lynn


Wed Apr 14, 2010 3:24 pm
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Joined: Sat Sep 22, 2007 5:53 pm
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Location: Texas
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MJ, I tried very hard to not use the term dementia with my husband. I do not know if he always realized his thinking was messed up but at times I would ask if he felt confused and he would say he did. I just tried to use other words besides dementia.
Lorraine


Wed Apr 14, 2010 3:59 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post Dementia Awareness
Hi MaryJean. Welcome to the forum. There's lots and lots of information here that you can get at by using the search function (at the top of the screen) if you choose. It's easy to do and many topics have been discussed in the past.

In answer to your immediate question, my LO knows that she has dementia. Years ago she wanted to find out why she was having trouble thinking and speaking so she asked her primary care doctor about it and was given a mini-mental status exam. The results led to a more thorough neuropsychological exam. While I set up the appointments, it was her quest for knowledge about her condition that ultimately put her in the dementia classification.

Does her knowledge of her dementia bother her? Yes, it does. In fact, she can never remember the word "dementia", I think because she is so aware of it and hates it. As a retired RN, she had a copy of the Merck manual and read all about it. She suffers when she thinks about the progressive nature of her dementia.

I didn't have to face your decision so I don't know what I would have done. Tried to spare her the anguish, probably. But I'm a lousy liar and she knows me too well, even now. One thing I do know is that each answer led (and still leads) to more questions. I took the Merck manual away.


Wed Apr 14, 2010 4:08 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Mary Jane, I don't use the word dementia with Frank but when he insists on doing things that I know he'll never be able to accomplish, I remind him he has Lewy Body Disease and it's like a cancer that has attack his brain in several areas making it difficult, if not impossible, to do some tasks. His Psyc. explained that it was like a lot of wires that send messages from the brain to all the areas of the body, but some of the wires are broken so the message is lost, so you know what you wanted to do but you don't know how to do it. As the mowing season is coming I'm dreading the argument with him about using the rider mower.
Take Care,
Gerry


Wed Apr 14, 2010 4:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Funny you should mention the Merck Manual, Annie. My dad has always had one of those (until the last year) and used to look up just about everything in it. I'm glad he hasn't read it since his big decline because it would really stress him terribly. I try to give as much info. as he can handle, and what he can handle. I don't want to lie to him but I don't want to see him even more unhappy than he already is.
I think he chose not to hear "dementia" last spring when I went to his primary care dr. with him. He sat there almost catatonic when the dr. and I discussed the symptoms and what might help him. That's the last time I ever mentioned the word in front of him. He just totally shut down at that appt. Lynn


Wed Apr 14, 2010 4:57 pm
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Joined: Tue Apr 13, 2010 2:43 pm
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Location: Wash St
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Thank you for the replies. I think I'll just not mention the word dementia, I like the wire idea; I think he would understand that, as he knows he's confused; he is just questioning why he is getting so terribly confused.

MJ

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MJ-Camano


Wed Apr 14, 2010 5:34 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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I too only mentioned Lewy Body Disease not the dementia part but honestly I think my husband always thought it was just PD which orginally he was dx'ed with earleir on, not sure he ever really knew it was something alse.

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Irene Selak


Wed Apr 14, 2010 7:42 pm
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Post post subject
I never mention the D word either. I tell him some of his signals in his brain get mixed, but the medications are really helping the signals get to the right places.
I truly believe if he thought he has dementia he would also have depression. There are days that he appears to be more aware of his illness and those are the days he also appears to be feeling depressed.
I try to keep him busy with things I know he will be successful, like folding clothes, vacuming, unload dishwasher, cutting coupons, (he likes this one because he thinks he's saving money)
This is working for now, who knows what next week, next month, or next year will bring. I will cherish today if it is good. Tomorrow can be another story.
Mary


Thu Apr 15, 2010 8:52 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Oh, I so wish my dad could do something like fold laundry, hold the newspaper, open his mail, etc. His arms barely move and he can't even feed himself. His legs are locked in sitting position and he can't move those either.
If your LO is still mobile and able to do some things, you are very lucky because when their mind AND their body don't work it is like they are trapped in prison. Lynn


Thu Apr 15, 2010 9:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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I agree the 'problem with the wiring in the brain' is a good description to use. Trouble is, most men believe that wiring can be easily fixed! :(


Thu Apr 15, 2010 9:40 am
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Joined: Sat Mar 27, 2010 6:15 am
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I have been thinking about this question also for several weeks.
I like to discuss with my dad what I am trying to do on his behalf and when I talk about the medications I don't like to say they are alzheimers or dementia medications.

My dad has good days where he seems to understand everything that is going on and other days where he just wants to die and doesn't want to know anything about what is going on.

We have an appointment set up with a neurologist the first week of May and I have been thinking how I am going to talk to the neurologist about dad with dad right there in the room. This is the VA and the Nursing Home doctor had to okay the appointment so I am not sure how it works or if I will get a chance to speak to the neurologist alone.

Since my dad is on over 24 medications & insulin - I am hoping first they will try to wean him off all the non-essential medications to see if his problems are related to medications rather than actual dementia. I know this is hopeful thinking but I feel it is worth a try. Some 4 medications are pills and eye drops for glaucoma and since dad is blind I don't know if these are still necessary. Some are drops.

I was thinking instead of using the word dementia. I would use the word cognitive such as "my dad may have vascular "cognitive" problems - how can we confirm or disprove this" or --- ""I think my dad may have "cognitive problems" due to Lewy Bodies for these reasons...... etc... but I would like to try de-medicating him.""


Sun Apr 18, 2010 2:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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You are wise to ask for a reduction in his medications. In my experience as a home health RN, I am constantly amazed and appalled at the number of medications elderly people are taking. I wish you well in your efforts on your father's behalf. Let us know how it goes.

I think the term 'cognitive' issues is a good one. It's always tricky trying to communicate with the doctor while your LO is there, listening. You might consider faxing or mailing a note ahead of time, listing some specific symptoms that lead you to this conclusion. I sometimes do that. It gives the physician a bit of a 'heads up'. --Pat


Sun Apr 18, 2010 2:56 pm
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Joined: Sat Mar 27, 2010 6:15 am
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I do not know what neurologist my dad will be assigned to at the VA. I plan to call the 800 number next week to see if I can reach that department and get the neurologist's name.
I am going to try to write up something to take to him or as you said fax it ahead of time.

Trying to get it to one page is going to be hard but I know that is important.

Trying to figure out what my real goal in requesting the neurologist appt is also difficult. Right now they have him down as vascular dementia.
From all I have read about LBD and watching the DVD I received from LBDA I am more convinced it is LBD - but in a way I am afraid to push for this diagnosis.


Sun Apr 18, 2010 3:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Grace - If for some reason I can't get the questions/points of discussion to the dr. ahead of time, I'll write up a concise list of issues/questions and hand them to the dr. before she/he gets to the patient room. I kind of linger outside the door and wait for them to arrive. Sometimes I hang around after they have met with me and my dad to clarify (or correct) misinformation, like when my dad tells the dr. he still reads 4 newspapers a day, and he doesn't anymore.
It seems like emailing this stuff would be the most practical way of getting the info. to the dr. but most offices won't give you the dr. email address, and I'm never quite sure the office staff forwards emails to the drs.
Good luck! Lynn


Sun Apr 18, 2010 4:04 pm
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