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 LO consistently thinks he's not at his home 
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post LO consistently thinks he's not at his home
Has anyone dealt with this problem? As it gets later in the day, my hb starts thinking he's away from home. We've lived in the same house well over 30 years, there are numerous family pictures on the walls, we've had the same furniture and decor for many years, and he keeps asking if I have the tickets, are we going home soon, etc, etc. I tried telling him we'd go home tomorrow, but it brings forward more questions about where we are and what we're doing there. Then he wants the bedroom door locked, checks it, and reacts in a thoroughly paranoid way. I think it's a result of his hallucinations--he sees people all around him, especially as sunset draws close. Any ideas on how to address what's becoming a difficult issue?


Mon Jan 09, 2012 5:52 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: LO consistently thinks he's not at his home
If you check previous posts you'll find many of our LO wanted to go home, no amount of explaining will convince them that THIS is their home. I tried driving around with Frank telling me the directions and he finally got frustrated because he couldn't remember the way to our house, so we went back home. He would say this isn't his home, someone else had a house exactly like ours, same furniture and wallpaper. You'll never win this one.
Take care,
Gerry

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


Mon Jan 09, 2012 6:17 am
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Joined: Tue Aug 30, 2011 1:36 pm
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Post Re: LO consistently thinks he's not at his home
This is probably our most consistent challenge with Mom. She isn't as insistent on going home that very instant as she once was, but that may partly be because we are not as insistent that we already are home. When she asks where she is, I'll say something like, "I THOUGHT we were in your house, but I've been wrong before." Then she'll either go along with me, or say, "No, I KNOW I'm not at home."

Can you come up with a distraction at that time of day? Anything he likes to do? I'll whip out some photos or play a gospel video or episode of What's My Line on YouTube. I'll try to engage in conversation if I can get her on to something. I think maybe it's become her go-to phrase when there is silence. No one talking? I'll ask where I am. It's sort of become a habit, I think. But it's different now than it was a year ago, when she had a panicked expression when she asked to go home.

I have heard folks describe this desire to go home as a desire to go where I'm safe, so sometimes I reassure that we're all safe, that we (my dad and I) are there for her, etc. Assuring the loved one that you'll go home the next day often works for us. You say your husband wants all the details about when and how you are going. Could you ask your husband what he thinks the best plan would be and then try to find something in his talk to grasp to steer the conversation a different direction? I don't know. It's a tough one, for sure. I don't know if it's because Mom is weaker or because we do our best not to contradict her (probably a combination), but she does not get as anxious about this as she used to. But she rarely thinks she is at home anymore.

Good luck to you.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Mon Jan 09, 2012 9:57 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: LO consistently thinks he's not at his home
In another thread on this subject "Home vs Home", I wrote
Quote:
' I don't think home is home the way we think of it ( a structure), I think it's a place where they feel like themselves again, and we can't give that to them, all we can do is love them and give the best care we are able to, no matter where they sleep at night.

We go through this a lot at our house, usually when Mom's cognition is in a downward spiral.
I just try to go along with it and get her distracted by talking about something else. With my mom it doesn't do any good to try to convince her that she is home, it just seems to frustrate her more. If she asks when we're going home I tell her that we're waiting for something, ie: the rain to stop or my brother to get here, etc... that usually satisfies her for a while.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Jan 09, 2012 12:53 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: LO consistently thinks he's not at his home
Challenged,

There are many threads on this topic as it's a fairly common symptom in LBD. It's a delusional disorder related to misidentification.

I think your line about saying "we'll go home tomorrow" sounds like a good one.

Trying to distract or re-direct is the standard approach. Some people take their family members out for a drive in the car, and then say "let's go home," driving back to their home. (That works for some.) Some people say things like "The plan is to go home tomorrow. In the meantime, let's have a nice relaxing cup of tea." Some people say things like "What do you like most about your home?"

Good luck,
Robin


Mon Jan 09, 2012 1:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: LO consistently thinks he's not at his home
By the way, I'd recommend discussing this symptom with the neurologist/psychiatrist. If there's lots of agitation about this, you may want to consider medication. Delusions are hard to treat. First line of defense is an AChEI, such as Aricept, Exelon, or Razadyne. Second line might be Namenda. Third line might be antipsychotics (such as Seroquel or Clozaril).


Mon Jan 09, 2012 2:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: LO consistently thinks he's not at his home
There are lots of good tips you've already gotten here. A large number of us on the forum have been through this, and sometimes that is helpful to know you are not the only one dealing with it. I'd tell my dad that "I'm working on getting you transportation there." "I'll let you know when I get it arranged." That would satisfy him till the next time. It can be very heartbreaking to deal with this. Hang in there. 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 Jan 09, 2012 6:00 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: LO consistently thinks he's not at his home
I'm going to try all those suggestions, thanks to each of you. It's a relief to know others have the same experience. As to the meds, he was unable to tolerate aricept, but is on a low dose exelon patch. We had a very bad experience with namenda, two emergency room visits in four days, plus him getting up early one morning, finding car keys where they had been hidden, and driving to the gas station. When he asked the attendant how to put in the gas, they figured out there was a problem and managed to get him back home. He had lost his drivers license over a year previously, the car was scraped up with a chunk out of the tire. We were grateful nobody was hurt. We quit namenda after the second emergency room visit. He is also on zyprexa twice daily to suppress extreme paranoia and massive hallucinations. The suggestion that "home" means a place where things are back to pre-diagnosis conditions really resonates. I'm going to try reading history to him each night, a little like a bedtime story. It's at least a place to start. Again I thank you all, and ask for any more suggestions.


Mon Jan 09, 2012 7:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: LO consistently thinks he's not at his home
I like your plan! Sounds like you are trying to be comforting...

BTW, Zyprexa is not the first choice of most LBD experts. Some can tolerate this medication; many cannot.


Mon Jan 09, 2012 8:28 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: LO consistently thinks he's not at his home
It was not our neurologist's first choice. My hb is seen at least 3 times a year at a major university center for dementia. Our neurologist's specialty is lewy body. Zyprexa is the only thing we've tried that controlled the paranoia that had him whispering inside his own home and crouching down to avoid being seen through the windows. We are aware of the dangers it poses and accept them for the relief it offers him. It's only one of the terrible choices lbd forces upon patients and their families.


Tue Jan 10, 2012 9:36 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: LO consistently thinks he's not at his home
this is a rough road for sure.. hubby has gone thru that so many times... thinking all these folks are here and im selling the house to them, one minute and furious i didnt ask him.. and wondering who built this house( he did) the next and wondering if we are renting or when we can go to our house.. we had lots of these, mostly in the evenings, a few years back and then they seemed to settle a bit.. we went on a few new meds, including galantamine and fingers crossed, we havnet had any delusions in a while... it so scary when they happen and the person you know is gone and this other person takes over.. i hope you and your loved one have fewer episodes.. please take care
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jan 11, 2012 1:14 am
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: LO consistently thinks he's not at his home
…..
I have a question….

when these delusions/strong belief in things that are in reality not true….and so obvious…..
became more intense and/or appeared or changed…..

was there a corresponding increase and or change in RBD……dreams?
either in frequency of occurrence?
intensity or outbursts?
intensity of physical activity?

did these change in your opinion because of what?
meds?
sickness?
stress?
nothing you could notice?

any other opinions?

just curious…..

I am having a noticeable change in dreams….I feel they are a harbinger of things to come

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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


Wed Jan 11, 2012 1:58 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: LO consistently thinks he's not at his home
Good questions, Craig.

Coy's delusions (mostly about not being at home) did not seem related to RBD dreams at all. Mainly because Coy does not have RBD dreams when he takes klonopin. Reading other caregiving sites, it appears that persons with other kinds of dementia and presumably no RBD also have the "I'm not home" delusions.

One delusion Coy had -- that he was an airplane -- occurred in the middle of the night and could have been an extension of a dream, I suppose.

Coy goes through periods of having other kinds of dreams vividly, but I haven't noticed a pattern that corresponds to his daytime behavior. There might be such a correspondence, and I didn't notice because I wasn't looking for it.

I don't think that his current episodes of confusion contain delusions.

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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 Jan 11, 2012 3:02 am
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: LO consistently thinks he's not at his home
craig.. ive tried and tried to figure out what triggers these .. and cant put my finger on anything.. except two times when we were on the train.. every time it got dark they started and they were very violent images... it happened every night, all night for three nights coming and going... once they started and he was so anxious.. he could not sleep.. the noise of the train kept him awake, and no matter what i gave him( meds wise) or tried, i couldnt seem to help him relax.. and the more tired he became, the worse the hallucinations were... i wish i could find an answer, as im afraid to travel any more.. and so is he...

asked the doc a few times and he said mainly overly tired... and of course lb.. but im not sure i agree.. as the ones at home, have no rhyme or reason and just happen out of the blue. and tiredness does not seem to play a role at all..
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Jan 11, 2012 11:02 am
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: LO consistently thinks he's not at his home
I think the tiredness is mental/emotional. Something insignificant ignites a stress episode which must run its course, resulting in increased hallucinations and delusions. We don't take overnight trips anymore, they're just not worth the repercussions. We visit museums once a week or so, go out to lunch, and try to maintain a safe environment with a lot of routine. There is a sweet spot where we're always trying to stay, but it's sure a moving target.


Wed Jan 11, 2012 4:48 pm
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