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 Non-Verbal? 
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Non-Verbal?
My DH is becoming so non-verbal. He CAN speak, but I think he just does not want to or does not know what to say...and he stares at me...he REALLY stares at me...stares a hole in me to the point of it becoming uncomfortable...he does not know it is uncomfortable..only Y'all know that. :lol: Gee whiz, what would we all do without each other??? Here it is Saturday morning and I am on the computer visiting with my LBD family who keeps me sane!

Wonder why he is so non-verbal? He was never a big talker, but he was not the silent type either.

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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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Sat Mar 19, 2011 12:24 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Non-Verbal?
I notice that Dad sometimes stares at me too, - but to me it is like I can see the wheels turning in his head, and he is trying to figure out just who the h*** I am. It is like an empty, glazed over look, and makes me very sad. Dad was always a very quiet man also, but he only seems to shout or demand nowadays. It is such an awful disease. It must be twice as difficult when it is your husband or partner. My heart goes out to you, Debra, and all those of you who care for your 'other half'.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Mar 19, 2011 12:47 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Non-Verbal?
ps.
I again say, I really would not be able to cope without you all here - ye understand! Its the best thing that has happened to me since my poor Dad became ill.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Mar 19, 2011 12:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Non-Verbal?
My father was mute for well over a year. Many in our local support group have become mute. You may have to develop other means of communicating -- 1 finger for yes, 2 for no, that sort of thing.


Sat Mar 19, 2011 2:23 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Non-Verbal?
So with this muteness, the person is capable of understanding speech but has just lost the ability to speak him/herself? My mother has such trouble finding words now that I feel as if she is in the process of losing her ability to speak, so I am trying to understand this process.

Julianne


Sat Mar 19, 2011 3:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Non-Verbal?
I'm unclear if it's 100% being physically/neurologically unable to speak or if some (probably small) part of it is the person's choice. Physical = muscles in the throat and mouth (including tongue) are rigid and don't work any more. Neurological = brain doesn't send signals to the muscles to work, or the muscles don't receive the signals.

Mutism doesn't happen to everyone.


Sat Mar 19, 2011 4:50 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Non-Verbal?
Debra, Frank stares as if he's looking right thru me or as if I were speaking a different language. 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, I'll undo his jean and try to pull them down, he grabs on to his underware and won't let me pull them down. I'd love to walk away, but it just means I'll be mopping. Or if he answers, he might say "I don't know", very helpful. Most of the time he doesn't answer and then resists every step of the way, it's good he usually goes to bed early because I am frazzled.

My Granddaughter gave me a journal to write 3 things that I'm grateful for at the end of each day. Some days I find it very difficult to find 1 thing that I'm grateful for.

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


Sat Mar 19, 2011 10:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Non-Verbal?
Gerry, I recently came across the gratitude journal in a murder mystery, of all things. The main character writes a short list each night. Her husband of a few days is in the hospital in a coma, after trying to resusitate a murder victim who it turns out had been poisoned. Her lists are strewn throughout the book. They are things like "Chunky Monkey ice cream," and "the kind nurse who checks on me in the waiting room," "a shower and clean clothes." Her cat, whose thoughts we get to read, has a list that includes things like "warm laps" and "tall grass." And I thought, hey, that doesn't look too hard. Maybe I should keep one of those. I haven't actually gotten around to it, though. :oops:

How long have you been keeping it? It must be discouraging when you don't have anything to write at the end of the day. Would you say that overall it is a more positive experience than negative? I'm really interested.

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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


Sat Mar 19, 2011 11:32 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Non-Verbal?
I started a "grateful" journal years ago, it was on Oprah, I started again a few months ago. Without repeating constantly or being grateful that it was sunny today, or Frank went to bed early, it's tough, but it does make you think. Some days just have the date and a ?. Fortunately our girls only live half hour away so we get together often, that I'm eterally grateful.

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


Sun Mar 20, 2011 7:39 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Non-Verbal?
Hi Debra,
My husband, Ken, hardly says a word anymore. I know he can because I hear him sometimes when he's almost asleep carrying on conversations with Lewy phantoms. Most of the time when I ask a question he stares at me, or past me. I really wish I knew if he comprehends what I'm saying and just can't articulate an answer or if he just has no clue what I've said to him. He still chuckles at unknown amusements and sometimes even at something I say. And he can still whistle JUST FINE! I notice the similarities of our ages and those of our husbands. At what age did you first know something was wrong with your husband? What does dh stand for? Thanks, 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.


Sun Mar 20, 2011 10:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3336
Location: Vermont
Post Re: Non-Verbal?
My dad never became totally mute, but his talking became less and less frequent because he had such a hard time (1) finding he proper word or (2) getting the correct syllables and words out. I could see him concentrating, trying like crazy to find the right word, and he'd look at me or whomever he was trying to talk with as though he was pleading for us to come up with the right word. The last few months were the worst - if we didn't guess right he'd shake his fists (when he could still move his arms some), get a horrible look on his face, and just yell "no, no, no, no, no, no, no......" Sometimes it would just bring me to tears, and I'd go out in the hall and cry, aned pray that he'd go to sleep and not wake up again. It was pure torture for everyone, especially my dad. His last few days he barely talked, but minutes before he died he carried on a long conversation that was clear in thought and speech. Unbelievable - what a strange disease. 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.


Sun Mar 20, 2011 11:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Non-Verbal?
Derek will start a sentence and stop after two or three words. I guess I'm supposed to be able to extrapolate the remainder because he expects me to understand what he's talking about. Example: "What about..." "About what?" "You know!" :|

_________________
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.


Sun Mar 20, 2011 11:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3336
Location: Vermont
Post Re: Non-Verbal?
Yep - been there, done that. It is so frustrating for all concerned. I always felt so awful for my dad because he tried so hard to get his points across. Eventually, the last few months, he'd just give up and look so deflated. It was so painful to see him like that. Lynn

_________________
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.


Sun Mar 20, 2011 11:29 pm
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Non-Verbal?
sher wrote:
Hi Debra, I notice the similarities of our ages and those of our husbands. At what age did you first know something was wrong with your husband? What does dh stand for? Thanks, Sher


Sher, when I knew something for sure was wrong was this past August when my dh (dear husband] became disorientated and confused while at work. He got lost in his car and ended up in the ER...he has not known much since. We have phased through 7 years worth of this stuff in 7 months! He has had one baseline period of 5 weeks once from Thanksgiving to Jan 5. I think he might be baselining again. We have had two weeks of very similar days.

_________________
~~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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Sun Mar 20, 2011 11:41 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Non-Verbal?
I could see him concentrating, trying like crazy to find the right word, and he'd look at me or whomever he was trying to talk with as though he was pleading for us to come up with the right word. The last few months were the worst - if we didn't guess right he'd shake his fists (when he could still move his arms some), get a horrible look on his face, and just yell "no, no, no, no, no, no, no.... Lynn[/quote]
I just had a similar experience with Dad yesterday. He kept asking for 'that drink - you know the one I mean'. I named every single one I could think of, and every time I got it wrong, his 'NO', got louder and louder and he got more frustrated. Eventually he told me it was a hot drink, and I got it first time, but it was awful seeing him struggling to get the right word, and see him getting so frustrated when I couldn't say it for him. My heart broke.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 21, 2011 7:09 am
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