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 Wanting To Go Home 
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Wanting To Go Home
Has anyone dealt with a LBD patient wanting to "go home". Nearly every evening around 5pm my husband begins an unrelenting plea to "go home". There is no way to convince him he already is home. Often he wants his boyhood home but tonight he wanted to go to "Oak Street", a place he lived 40 years ago. He has gotten agressive in his demand to go home, gotten up to leave the house, and actually walked to the car and gotten in the passenger's side. He refused to get out of the car until I took him "home". I am at my wits end with this. I dread the evening. I have often taken him out for a ride in the car when he starts this, showing him familiar places, trying to reorient him to our city and street. Most of the time it doesn't work. Once we are back home, he starts the pleas all over again. I'm losing my mind with this.

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P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Sun Dec 04, 2011 12:51 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Wanting To Go Home
Yes, we dealt with the same problem here. Trying to drive him around for a while and then back 'home' just made him furious. As someone on this forum observed recently, what they are really wanting is to get back to a place that seems safe and familiar--a non-Lewy place.

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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.


Sun Dec 04, 2011 1:05 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 716
Location: LA
Post Re: Wanting To Go Home
Ann, I'm sorry to hear this. Yes, most everyone on this forum has experienced what you are discribing. I just muddled along doing the best I could with redirecting his thoughts and sometime doing as you have done... recently one of the members took her husband out to find "home" and I think he still refused to get out of the car upon returning home. I kept the refrigerator filled with frozen treats or various foods that Mr Bobby enjoyed and played music or talked and talked about differnt things... Anything to get his mind on something without trying to convince him of reality. That is not possible.

Not long before he died, one morning when his mind was clear and I appeared in his bedroom with his brekfast tray, he asked me how I did that. I wanted to know what he meant, he said, I go to sleep down at Mama's house, or the swamp, or the ball park, and you always find me and bring me home. How do you know where I am. I would give him a kiss and say, "Honey, you can never go anywhere that I cannot find you". And, yes, he built our house and we lived in it for sixty years but he still wanted to go home.

Just do the best you can but it is quite a common occurance. Best of luck to you.

Dorthea

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"See this lady, she's 85, but she's nice"


Sun Dec 04, 2011 1:20 am
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Re: Wanting To Go Home
Thank you both (Pat & Dorthea) for your quick replies. I was hoping for "an answer", a fix, but I can see there is no fixing this desire to go home. There isn't any fixing to most of this Lewy Body Dementia. Sometimes I think I can't cope with another day of living inside the world of delusion, hallucination, capgras, and wandering. Night fall comes and the pleas for home begin. I'll keep trying because I'm not the only one. You've made it through and I can too.

_________________
P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Sun Dec 04, 2011 1:57 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Wanting To Go Home
Have you ever had a day where everything was going wrong and you couldn't seem to cope and you just sat and whimpered "I want my mommy"? I have. I didn't literally mean it, I just wished that magically someone else could take over my responsibilities and take care of me. I imagine that the "I want to go home" plea is similar. Who knows? But ol' Lewy is pretty literal minded about it.

Some people think the "home" is a childhood home. Since Coy was not especially happy in his childhood home and spent part of it in an orphanage, I doubt that applies in his case. (But again, who knows?) To me the idea of wanting to go back to a pre-Lewy time makes sense. Hey, in that sense I want to go home, too! :cry:

Coy is in his ninth year with Lewy. He wanted to go home for a few months in the first year. It has not been a problem since. Ann, I hope you get past this phase soon!

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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


Sun Dec 04, 2011 2:30 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Wanting To Go Home
Recently, Ellen gave one of the best descriptions of this phenomenon in this post:

viewtopic.php?f=13&t=3243

She said: "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."


Sun Dec 04, 2011 2:50 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Wanting To Go Home
Jo Ann, does your LO take any med. for anxiety? Tom takes a small dose of Ativan at bedtime and when he gets really agitated during the early evening about wanting to go (wandering, trying to get to the car, etc.) I give him a "sliver" of a pill to calm him down--recommended by his Dr. I can then reassure him and divert his attention to other things.
I'm not pushing meds as a way to deal with every problem Lewy presents but this was a big one for me. It's my worst time of the day too and the stress level was off the charts. This has really helped us and I don't have to do it every day. Perhaps you could discuss this approach with your dr. Good luck, Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Dec 04, 2011 11:44 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Wanting To Go Home
Yes, most of us have heard these pleas from our LOs, so you are not alone in this. There is a lot of discussion elsewhere on the forum (Robin gave you a link to one of the places) about "going home". In addition to wanting to go home (which was sometimes my dad's house that he'd built and lived in since 1952, sometimes it was his grandparents' house he'd left when he went away to college at age 16) he'd want to go to Jeannie's, a place where he liked to eat lunch his last 10 years or so. That felt like home to him, I suppose. It was almost an hour's drive each way, which he would not have been able to handle at all.
When he first moved to the ALF, I'd tell him that I'd take him home for a visit if he got his legs stronger by doing his PT exercises and cooperating with the PT when he was there, because I could not get him in and out of the car by myself. Then when he stopped doing all exercises and using his walker because he wanted/needed to be in a w/c all the time, I'd tell him I was looking into how we could get him transported for a short visit home and that seemed to satisfy him so he'd drop the subject.
Worse than the "going home" pleas, was when he'd cry for hours that he wanted my mom (she'd died in 1997) and he'd have all his CGs in tears too, and they'd call me, because he didn't do this when I was there with him. Somehow, through the telephone I was supposed to get them ALL calmed down! It ripped my heart out that there really was nothing I could do.
You just do the best you can with a frustrating disease, but knowing that others experience and somehow survive it all helped me get through those very tough times. Best, 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 Dec 04, 2011 12:15 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Wanting To Go Home
okay….on this subject of Wanting to go Home…

I believe that this would be a pleasant thought…self medicating thought…
it makes me feel good, thinking about home….
I have had many….adult homes, childhood homes, so the idea of home for me is a challenge from the get-go….

so remember….in all of my postings….me as patient…I am trying to make sense of all of these changes that I am going through…
and those changes I may go through….
I find all of these things utterly fascinating….
as some of the fine points discussed I can discern from personal experience…
and then….that discernment may be an illusion….I'm good with that….its what I've got…

Wanting to go home....

Random thoughts becoming unassociated....

Random thoughts becoming associated....

...random thoughts becoming associated together....

...not so random thoughts becoming associated together with random thoughts....

...a mess to try to figure out....none the less....all a reality….

……………..
In discussing the idea of forgetfulness of a LBD patient..it is not so much the loss of short term memory….but more of a disconnection between short term memory thoughts….
think of it like this example:
….a full thought consists of six parts
each part consisting of six words on six whiteboards….
each numbered and ordered…..one through six….
now shuffle the six whiteboards….toss them into the air and let them fall in no particular order….

this is my understanding of one feature of LBD…

now let me give you an observation from my last supervisor at work:

“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.  “

.....this was from someone who has never heard of LBD....

SO.....just some thoughts about this ‘Wanting to go Home’......thinking not being linked to what ‘Home’ is, was, or even could possibly be.....

the ‘thought’ of home....is currently associated....with ‘WHAT’?

this has to be an expected occurrence....as the thought of Home.....would be something that HAS to happen daily....with everyone....

Just me, thinking out loud....

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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


Sun Dec 04, 2011 3:30 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Wanting To Go Home
Wow, Craig, I'd say you had a very observant and perceptive supervisor.

_________________
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 Dec 04, 2011 4:59 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Wanting To Go Home
Pat,

She still is…..as I once was….

an accomplished Business Application Developer….Software Engineer…Full Life Cycle…
from idea to implementation….

being observant is/was a job hazard...

_________________
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


Sun Dec 04, 2011 5:17 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Wanting To Go Home
Craig, this is a disease that very definitely doesn't discrimnate based on intellectual ability. Or if it does, it aims for the top of the heap, as pretty much all the people I know or know of with this disease were above-average in mental skills and productivity. I have no trouble at all believing you were an exceptional Software Engineer, which definitely requires exceptional intelligence. A friend has an uncle who wrote 50 books in his technical field and is now struggling with PDD.

We don't know what causes Lewy bodies to form. But we know for certain that it isn't caused by lack of intellectual capacity.

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


Sun Dec 04, 2011 6:20 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Wanting To Go Home
Jeanne,

Actually….I will come back to this….another Mayo Dr. thinks that over use of default brain might be a major culprit….

I think you will find a lot of achievers have this trait….

Stress….will be found to major here too…..

_________________
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


Sun Dec 04, 2011 6:45 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Wanting To Go Home
OMG ... over use of brain is a culprit? Whatever happened to use-it-lose-it and keep you mind active to defer dementia theories?

(Throwing up hands,) We really don't know, do we? And, at this point for those who already have the disease it really doesn't matter. How best to deal with what is, is what's important.

For the sake of future generations, I hope issues like this get a lot more study, as we discussed in the Life Styles thread.

BTW, although Coy was/is a highly intelligent man and was productive in his engineering career, he was not a Type A personality, not driven to always excel, not into a lot of overtime, and hardly ever stressed. I don't know exactly what brain overuse would be, but I doubt he exhibited it.

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


Sun Dec 04, 2011 7:07 pm
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Re: Wanting To Go Home
Once again, thank you one and all for your helpful posts. Each of you added a puzzle piece, putting me back together again. I rarely post anything but when I do, I'm usually at the end of my rope. Your collective wisdom took me from tearful despair last night to a brighter, happier place today. Don't know what I would do without this support.
P.S. My husband had/has an incredible intellect. He was an attorney with the most incredible vocabulary, completed cross-word puzzles every day at warp speed, an amateur historian who build a million-plus database on Vietnam Veteran Casualties, and a man with unending curiosity about the world around him. I'm very taken with the suggestion that Lewy Body Dementia patients may have made optimum use of their brains throughout their lives. Watching the posts and noticing the backgrounds of so many patients caused me to wonder about the connection for some time. I've assumed a logical explanation would be those on this forum have access to computers and the wherewith all to seek accurate diagnosis and support for their LO or themselves. It would be an interesting line of research to follow.

_________________
P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Mon Dec 05, 2011 1:50 am
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