View unanswered posts | View active topics It is currently Mon Apr 21, 2014 3:25 am



Reply to topic  [ 15 posts ] 
 Husband with LBD; his symptoms 
Author Message

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Husband with LBD; his symptoms
My husband Marc is 81 (we've been married for almost 22 yrs) and he was diagnosed with LBD at beginning of June 2012. I am 46 and we have a 13 year old son.
Looking back I see he has had symptoms for at least the past year. Started with movement & balance problems, and he had some hallucinations & delusions in Sept/Oct. 2011 which reappeared in May 2012. I thought maybe Marc had Parkinson's disease; I'm familiar with it because my father had Parkinsons; I have wondered recently if maybe my father had undiagnosed LBD, as he had paranoid delusions on and off since his 50's (he died last year at age 77).

Marc's Hallucinations: often seeing people in the house; seeing objects "pop out" at him at unusual angles.
Marc's Delusions: That our house is a duplicate house, not the real one, and everything in it is duplicated. This would get worse in the evening. He asks me, "Can you drive me home? You know I can't drive at night." And I say "But we ARE home." Then he just shakes his head and looks resigned, like I just don't understand. The neurologist said this is called capgras syndrome. At least he doesn't think I am a duplicate, which some people with this type of delusion do -- think their loved ones have been replaced with duplicates. It's just heartbreaking to have him ask me take him home when we are at home. I guess what's really upsetting is to see him being so different than his normal self -- to see him lose his interest in music (he was a jazz musician), to lose his sense of humor. And yet it comes back sometimes...his old self.

Just writing about this is making me cry. I try to be strong in front of our son; he's 13 and I dont want to burden him with too much adult stuff.

Thanks for listening.

_________________
Cherie, CG to husband (81) with LBD


Fri Jul 13, 2012 3:59 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband with LBD; his symptoms
Cheri,
It really is odd, trying to tell him he is home is actually a waste of time as he believes what he believes, the best you can do is redirect him to something else, often when my husband wanted to go home I would just take him to another room in the house! My husband thought I was one of three !

_________________
Irene Selak


Fri Jul 13, 2012 5:10 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Husband with LBD; his symptoms
I'm sorry this is happening to you and your husband! My husband exhibited the very same symptoms and still has some of them. Since he has lost most of his ability to communicate, it's hard to tell now what he is seeing/thinking. :cry:

Welcome to our forum. I hope that you will at least be comforted to know that you are not alone. I know I was!!!! Irene, the moderator, and the other fine people here have been a godsend to me and to many others, as well. God bless you!

_________________
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.


Fri Jul 13, 2012 5:13 pm
Profile

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Re: Husband with LBD; his symptoms
Thanks for sharing. It does help to know I'm not alone. And to be able to vent about this stuff to people who understand. Friends and family who don't see him every day like I do will say, "But he seems fine! " Even doctors will say, "His memory is good." yes, he knows his name and date of birth and who is president, but he doesn't tell them about his delusions and other people are rarely around when he hallucinates, partly because it happens more in the evening. The physical part is easier for people to understand...they can see his shuffling walk, slowed movement etc.

Irene, I'll try that about taking him to another room, maybe that will work. how did you cope with him thinking you were one of three? I have been telling him lately, "Your brain is playing tricks on you, but you know you can trust what I tell you." that helps some. And I remind myself that to him it seems real, so there's no point in trying to reason with him.

_________________
Cherie, CG to husband (81) with LBD


Fri Jul 13, 2012 5:42 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband with LBD; his symptoms
Cheri,
I hope your sitting down for the answer to how I handled being one of three, When he would say he was looking for his wife, I often would say I am here and he would say no I want the real one, I often walked down a long hallway that curved off where he could see and I would come back out and say " Oh were you looking for me " It worked almost 100% of the time! :lol:

I do hope you are journaling , really important to bring to Dr appointments and is it possible to e-mail the Doctor prior to appointments that way you minimize all the talk about your hubby while at the apppointment !

_________________
Irene Selak


Fri Jul 13, 2012 6:56 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Husband with LBD; his symptoms
Irene, we didn't always have the same success. :lol: One evening when my husband wanted to go to our 'real' house, I got him in the car, drove him around for a few miles then back home and into the garage, saying, smiling, "Well, here we are!". He retorted, "What kind of game are you playing?!" and was furious. So angry, in fact, that I ended up having to phone the police. :cry: You can fool a Lewy some of the time but, as we found on several occasions, not always.

As I have often posted here, when he wanted me to call his wife, I would call my cell phone and answer it. He would ask where I was and I would tell him, well, I'm right here talking on my cell phone. I'd have the phone in one hand and the cell phone in the other. :lol: We did this little exercise with annoying frequency.

_________________
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.


Fri Jul 13, 2012 7:55 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband with LBD; his symptoms
Pat,
If you noticed I said "Almost" 100%, we also had a few times whee I was told what kind of game are you playing, I do remember you mentioning the Cell Phone escapades with you and Derek. I have also been known to have a little bit of a warped sense of humor and used some situations to my advantage like the night he thought I was the girl friend and we were sneaking around behind the wife's back, in the end he said he wanted to stay with his wife as she takes really good care of me!
Its a good thing he said that !! :lol:

_________________
Irene Selak


Fri Jul 13, 2012 8:28 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Husband with LBD; his symptoms
That's funny, Irene! There were many times when I was hugging or kissing Derek and he would ask, 'What will my wife say?'. :lol: He pretty much got over Capgras syndrome when he started taking Seroquel. Anyone else notice this?

_________________
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.


Fri Jul 13, 2012 9:00 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband with LBD; his symptoms
No Pat,
Capgras stayed with us even with Seroquel and if memory serves me right I think Jim's final dose was 125mg a day ! So in answer to your question I didn't see any real changes !

_________________
Irene Selak


Fri Jul 13, 2012 9:28 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Husband with LBD; his symptoms
It may have been coincidental but Derek's Capgras disappeared about the same time he started on Seroquel. Capgras was a big feature, though, from 2008 to 2010. His other delusions and hallucinations didn't stop, though.

_________________
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.


Fri Jul 13, 2012 9:38 pm
Profile

Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Husband with LBD; his symptoms
Hi all....Norris began Seroquel (just at night to help with sleep), and recently we added one pill in mid afternoon because he gets anxious and wants to go home. But it isn't like the Capgras was before when there was a duplicate house and duplicate wife...he just wants to go home. So the Seroquel did help that. The only thing it hasn't touched are the other delusions and hallucinations, and of all things he keeps thinking we need to pack to move to Durham! Durham of all places, he went to Chapel Hill and refers to that "other" school as DOOK! So he will want to pack for Durham, and then I run put on his TarHeel hat and he will actually laugh and say "I guess Parkinsons is messing with my head again". Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Fri Jul 13, 2012 11:21 pm
Profile

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Re: Husband with LBD; his symptoms
Reading your posts I'm realizing what a complicated disease this is! I appreciate your sharing and your sense of humor, both of you.
Marc seems to be doing better on Aricept...no hallucinations or delusions at present. maybe a coincidence, as I know symptoms can come and go with Lewy, but it seems to help.
He is at a SNF now for a short term stay, getting PT and OT. HE fell at home twice in two days and was having hallucinations and delusions. Plus hardly eating at all. He was hospitalized with a bladder infection and dehydration, then transferred to SNF.
Other symptoms he had at home were feeling cold all the time and being very restless at night.

_________________
Cherie, CG to husband (81) with LBD


Fri Jul 13, 2012 11:23 pm
Profile

Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Re: Husband with LBD; his symptoms
Does Capgras syndrome often show up with LBD?

_________________
Cherie, CG to husband (81) with LBD


Fri Jul 13, 2012 11:25 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Husband with LBD; his symptoms
I don't think all LBD'ers have capgras but I know many of them do!

_________________
Irene Selak


Fri Jul 13, 2012 11:40 pm
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Husband with LBD; his symptoms
I don't know how many have it but seems like quite a few on this forum have experienced it. It's thought to be caused by the disease involvement in the dual visual pathways and is often resolved when dementia becomes worse [a doubtful blessing, to be sure!].

_________________
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.


Fri Jul 13, 2012 11:42 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr