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 Non-Verbal? 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Non-Verbal?
There will be times that Frank makes perfect sense, but not very often. I'm having more and more trouble to get him to follow directions, like, "stand" and "sit". :x Today I'm going to try it in writing, like a flash card. Has anyone tried that? My daughter is a teacher for mentally challenged children, middle school age, and said she'd make up some cards that she finds helpful in the classroom. I'm finding I get more and more drained trying to get him to do the bare necessities in every day living. He's still very mobile.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Mar 21, 2011 7:26 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Non-Verbal?
Gerry wrote:
. I'll ask if he has to go to the bathroom and he just stands, leaning forward, drooling and stares. If it appears that he does have to go, .


Gerry,
I think it becomes very hard for them to answer questions, I found it easier to say things like, I think it is time for you to use the bathroom, I found he did better with that type of statement rather than have to come up with an answer.
Same with food I stopped giving choices he just couldn't make them instead of saying "Do you want a Hamburger or a Hot Dog" I started saying I made a Hamburger for you, come on lets eat !
Just my .02 wortth !

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Irene Selak


Mon Mar 21, 2011 9:35 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Non-Verbal?
Irene,
I stopped giving choices or asking meaningful questions long ago also. Now the sort of questions I get a stare from are more like "Wasn't that fun? "Does that taste good? I really do not know how much of life Ken understands. I do know he lights up when he sees me and that's enough to keep me going. One day at a time! Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Mar 21, 2011 9:51 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Non-Verbal?
Gerry - your LO sounds like his physical functioning and mental functioning are at very different levels. I think for a lot of us, both started declining at similar rates, at least I know it was that way for us. Because my dad had such a huge overnight decline, mental, physical and emotional levels all decreased at a rapid rate. Therefore he was no longer mobile at the same time everything else fell apart.
It was much easier for us too, not to give him choices, or too many choices, like what he wanted to eat. Since he couldn't sit or stand anyway after the last fall, those sorts of directions were a moot point. Once he got out of rehab the best we could do is tell him where to put his feet when we were getting him from the wheelchair to the car seat and back. He didn't quite get it usually and someone would have to hold him up while someone else moved his feet and legs.
Have you consulted PT or OT or the dr. about how to help him? Sounds like your daugher might be your best bet since she has some great ideas. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 21, 2011 10:13 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Non-Verbal?
My Mom gets reliably stuck on certain names and words. "He" is my husband, Tom. "She" is either herself or a CG named Michelle. The weirdest thing is that she can't say the name of things she doesn't like. "It" combined with a frown most often means "walker" or "wheelchair". People who watch us communicate are amazed when I come up with a noun and it is the right one. But I really have to concentrate. Often I will get down on my knees (when she is sitting) to stare at her face at the same level so I don't miss any facial cues. I'm sure losing the ability to talk is really tough for her. She loves talking and has always "made conversation" when there are silences.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Mon Mar 21, 2011 10:17 am
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Non-Verbal?
My dh will ask a simple question about twice a day. Otherwise, he remains mute and lays in the bed until I make him get up. I make him stay up after eating to aid in digestion...and I make him sit in the chair part of the time...get him to walk outside for a few minutes...but left alone, he would lay in bed and just lay there...do nothing, say nothing, watch nothing. He can toilet himself, just not very well and sometimes he sits in there until I ask him if he is OK...and he askes me if he can lay down now. He had some awakenings a week ago...but it has been 8 days now since one of those episodes. He could not hear much yesterday...he has no hearing problems of which I am aware. Keep in mind, he was working a full time government job and driving just fine in August 2010. He talked up a storm to his coworkers....now he is virtually silent.

In the past few days he is having what I *THINK* is imprinting on the optic nerve. You know how if you stare at a light and close you eyes you will see it in the negative? Or if you stare at something long enough, when you look away you will see the image of it off the side of the actual image...well, I think this happens when he tries to watch TV. He stares at things with intensity, then looks at the TV and tells me it is on the "film." I can remove the object from his line of sight, but he continues to see it on the TV.

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Mon Mar 21, 2011 11:19 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Non-Verbal?
The hearing and sight thing is a real mystery, isn't it? How my dad could be so deaf, and then every once in a while have incredibly acute hearing after his big decline, is totally baffling. And his sight would come and go too, towards the end. He had no idea what he was watching on tv sometimes, literally, he didn't know that the aids would turn on soap operas - he thought he was watching sports (well, actually with some of the stuff on tv these days I guess you could call it "sports" :lol: ) Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 21, 2011 10:58 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 463
Location: Minnesota
Post Re: Non-Verbal?
For Mom, it's word-finding. She can't find the right words so doesn't say anything or starts the sentence and then the loss of the word frustrates her and she quits or someone finishes the sentence for her - not necessarily in the right way. Her new doc says to give her lots of time to get the words out, but she's the one who gets upset and clams up.

Some people assume that her inability to come up with a word means she can't understand what they are saying so they talk around her. Big mistake. Mom usually is well aware of what they are saying. I try to warn people about this when they first encounter her. She can get very offended and stubborn if she is treated in a way that suggests she is incapable.

Here's an interesting thing that happened tonight. I made the foolish assumption that Mom's reading was gone. But I picked up a card she received and asked if she wanted me to read it. She made a "give it here" gesture and read about half of it to me. And she had no problem saying the words. This was such a pleasure for me. She spoke so clearly. Wait until I tell her doc!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Mar 22, 2011 11:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Non-Verbal?
Kate, you are so right! It's so easy to assume they are not processing information just because they cannot articulate it.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Mar 23, 2011 12:08 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Non-Verbal?
Kate, one of the interesting things I heard when Coy was in Regions hospital for five weeks after a head injury was that it is often hard even for professionals to tell confusion from poor word choice. For example, when he was asked where he was and Coy said "a high school" was that because he really thought he was in a school, or because he couldn't bring the word "hospital" to mind? Coy had a whole range of therapy sessions every day, and I was also told that while there is observation that occupation therapy helps, etc. the only therapy with strong research to indicate that it does indeed help is speech therapy (or was at that time, 1994).

I don't know whether we need words to think, but we need words to communicate, especially outside our intimate circle. How frustrating it must be to lose command of our vocabulary! Hugs to your mom, and all our LOs who struggle with word retrieval.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Mar 23, 2011 8:46 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Non-Verbal?
Kate,
I don't blame your mom for getting upset when others*think* she doesn't understand , I believe they understand a great deal but have trouble getting their thoughts out verbally, then when others talk like she doesn't exist is just plain rude on their part ! None of us REALLY knows what goes on in their minds and shouldn't assume, this to me is part of treating her with dignity which she so deserves

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Irene Selak


Fri Mar 25, 2011 4:06 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Non-Verbal?
Mom's withdrawal was one of her early signs. My dad and I thought she was mad at us, but we didn't know why. When we tried to talk with her about it, she denied being mad but couldn't explain why she didn't make conversation anymore. She hardly talks at all now. It's almost surprising when she does, and it's usually a short question or sentence related to a comment someone made several minutes earlier. She often can't find the right word. She said "customer" instead of "doctor", for example. We don't know if she's having hallucinations or not because maybe she is but just isn't talking about what she sees.


Fri Apr 08, 2011 3:12 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Non-Verbal?
I am not going to assume that I understand what you are seeing as a caregiver…
I am not going to assume that I understand what you L/O is experiencing…

But….02cents…

I think the majority of this conversation you are having is about two entirely different things for me….

1) is the staring into space without the desire to do anything else….even feeling like there are two tons of weight stopping me from moving my head a fraction of an inch…but if I really need to move it….then I can

2) the inability to keep words flowing in conversation

I am new to all of this…and trying to figure this stuff from the inside…and what I think you are saying might not be the same thing…..and I could be communicating with the disadvantage of having this disease….and my response will make about as much sense as what you are seeing at home….

since it appears that this disease progresses in depth of sypmtom severity over time….that probably parrallels the severtiy of the accumulation of the Lewys in the area of brain that controls whatever outward feature you are seeing….

some of the minor glitches and irratations that I experience are probalby the beginnings of some of what you are seeing in massive doses…I can't believe how lucky I am to have what seems to be the majority of features of this disease in some level of severity….with the exception of hallucinations and extreme visual/spatial problems….but then I ask myself….who I am to judge or know….

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Apr 08, 2011 4:25 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Non-Verbal?
BC, do you find it hard to find the right word?

Do you ever think you've said what you meant but can tell from people's reactions that you must have used a wrong word?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Apr 08, 2011 10:46 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Non-Verbal?
Jeanne,

All of the time…

Verbal issues I have…

1) my conversation just stops…period…dead silence….can't say anything
2) I lose my train of thought…but, can express that immediately
2) I can't think of a word that I know…it can be as simple as a 3 or 4 letter word….and I will try every synonym or almost synonym…thinking right now, I am not sure that I don't ever know the meaning of what I want to say….but sometimes can't express even the meaning…can only think it

when things go bad in conversation….I can tell…what I mean is that I can tell when what I want to say is wrong or stops or is messed up…

I sometimes can't understand why the other person doesn't understand…even after mutliple attemps….I usually attribute to the flow being hard to follow…

this is what my ex boss wrote about my conversation skills, when I asked her if she could jot down how I appeared:

Symptoms I've observed from Craig

Craig has a very good mind but he is sometimes unable to present thoughts in an articulate manner. At times, his communication is presented in half formed sentences that do not seem logically related to each other. If his conversation could be considered a "puzzle" with each "thought" being a "piece of the puzzle", the analogy would be that the puzzle pieces are "cut in half" and tossed in the air to land in no particular order.

Very often, Craig seems extremely fatigued to the point of being in a stupor. Other times, generally in the mornings, he is so completely over stimulated that he can't have a conversation without constantly slowing himself down to logically sequence his statements. Most of the time, he seems seriously exhausted by the end of the day and frequently, well before the end of the day.

Craig has shown, at times, resistance to instruction and maintenance of a rigid position against attempts to be moved.

The time it takes him to complete a task is probably impaired as well, all though this is more difficult to define.

He has, at times, complained of chest pains and indigestion.


the overstimulation she referenced….provigil….good stuff…extended my work the last year…I still had to get them to let me flex every other morning….(12 noon on Tues and Thru)

they couldn't nail me on production…until they put me on piece work….as long as I was on regular length projects…part time superman would pull it out everytime…
even the last days I was working…I was cleaning up someones else's poor quality work….they never could get me for poor quality…even when I left….nada…nothing…I made triple sure of everything I did….I knew I had to…just like I sometimes walk back to the house door three times to make sure I locked it….

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Apr 09, 2011 12:44 am
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