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 Sharing w Caregivers of LBD Patients with Capgras Syndrome 
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Sharing w Caregivers of LBD Patients with Capgras Syndrome
Hello. This is my first time using this site, and I am looking forward to sharing with, and learning from, other LBD caregivers. My husband was diagnosed with a MCI level of LBD a few months ago and is on the Exelon patch. The first symptoms that brought this to a head were periods in early February of misidentification of me, which seem to be classic examples of the Capgras Syndrome. He started to have delusions that other women were taking my place at times, as imposters, even though they looked like me and seemed to know everything about our daily routine and our life together.
He ultimately went through extensive testing under the care of an excellent neurologist, including eight hours of neuropsychological tests, and LBD seems to be the most accurate diagnosis. Looking back, we believe he has had some of the problems or symptoms likely for four or five years and they are progressing.
Although the Exelon patch is helping "somewhat" with his memory and day-to-day living, he still has off and on periods with the Capgras Syndrome, usually in blocks of a week to ten days. He was free of any occurences for about three weeks, and we thought an increased dosage to the 9.5 mg Exelon patch was helping. But then the Capgras delusions returned. They are just now disappearing, I hope for a long while.
During these times, he believes the other women come and go, and he sometimes is defensive to them, believing that he is protecting me and my possessions. He used to get upset that they were wearing my clothing and making decisions about my possessions. I try to reassure him that they are just me, and he accepts that most of the time, but the other women are very real to him. Sometimes, I can't help showing my exasperation, and that leads to heated words. I am worried about the future and concerned about some misjudgements he seems to make now. aside from the delusions.
I would really appreciate any input on handling the Capgras delusions or early LBD symptoms in general. I'm getting conflicting opinions on how to handle the delusions from different doctors. A neuropsychologist who my husband has been seeing for five years says I should reinforce that I am his wife and the only woman in his life. Yet a psychologist that we have both been seeing for several years says I should go along with it most of the time rather than agitate him. Thank you for any help!


Sun Aug 22, 2010 2:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Annette, my husband has Capgras Syndrome all the time now, although it used to be only occasionally. It is rare when he sees me as his wife but, as you report, someone dressing like me, etc. How to deal with it? We have found nothing that has helped his delusions, which are constant. I try to reinforce but it does no good. The Exelon patch initially reduced his anger and agitation but didn't seem to affect his delusions. He's been on Exelon now for two years. It's a mystery why some have this syndrome and some do not. Wish I could help but at least I can commiserate! :P

_________________
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 Aug 22, 2010 3:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Annette,

The "conventional wisdom" from dementia experts (including the Alzheimer's Association) is that you don't challenge delusions. There are some excellent materials for caregivers from the Alz Assoc website. For example, see:
http://www.alz.org/national/documents/t ... epsych.pdf

In our area, an organization named Family Caregiver Alliance (caregiver.org) teaches classes for caregivers on dealing with dementia-related behavior, including delusions. You might investigate if there's an organization in your area that teaches such classes, perhaps in conjunction with the local chapter of the Alz Assoc (alz.org). FCA also has some excellent materials on its website for caregivers.

There is a lot of discussion elsewhere on this forum on Capgras. You can do a search of past posts using the Search button at the top of the page.

Robin

P.S. Coincidentally, the LBDA posted recently here about a magazine author wanting to do an article on capgras syndrome.


Sun Aug 22, 2010 4:02 pm
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Thanks, mockturtle. It does help to know others are going through the same situation. No doubt, this will get worse not better...


Sun Aug 22, 2010 5:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Welcome, Annette. I'm sorry you're having to deal with this. I've found that going along with my dad's delusional thinking eliminates some of his aggitation, or at least doesn't add to it. They "know" what is real and seem to experience our correcting them as a an argument since what they "know" is real to them. It's just not worth it most of the time. Stop by the forum often. Lots of caring, understanding people here. 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 Aug 22, 2010 5:14 pm
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Joined: Sat Aug 21, 2010 12:30 am
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Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Thanks, Robin... I think the best approach would be to go along with the delusions at this point, unless the situation is risky at the time. I appreciate the resources you listed and will look into some Alzheimer support groups in my area. Maybe there will be one specific to LBD within driving distance. I'll also search this forum for Capgras. I think this is forum is going to be an excellent source of inspiration, information and support. I hope that I can contribute something worthwhile as time goes on. Thank you again, and take good care...


Sun Aug 22, 2010 5:26 pm
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Joined: Sat Aug 21, 2010 12:30 am
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Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Thanks for the nice welcome, Lynn. In such a short time, I sense that there are caring and supportive people here. Your input reinforces that going along with it is the best way, even though it's hard for all of us at times. Take good care...


Sun Aug 22, 2010 5:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
You can search for local LBD support groups on lbda.org. There are not many in the US.


Sun Aug 22, 2010 6:12 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Annette, Welcome, everyone here understands what you are going through. We also deal with capgras, Frank thinks there are 3 of me. It would be nice if I could ignore or go along with it. One example was when we went to lunch last week, after leaving the parking lot Frank told me to go back. He said we couldn't leave her there. I explained several times that we had come alone and there wasn't anyone left at the restaurant, he tried to pull the car out of gear. Later we were in the den and he looked at me puzzled, asked how I got home, he thought I was the one that got left behind. He has thought for several years now that I'm having an affair, again I can't go along with that, lots of those situations. We also drive around trying to find OUR house, the one we are in looks just like ours, same wall paper and furniture, but it's not ours. He quite often gets up in the middle of the night to go home before the owner of this house come home???Good Luck, this is a "no win" situation.

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


Sun Aug 22, 2010 8:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
I suppose if my husband had LBD and accused me of having an affair I wouldn't go along with that either. I guess I'd try to ignore it as much as possible. You have some really difficult things to deal with. There are no good answers to this that I can think of.

_________________
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 Aug 22, 2010 8:30 pm
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Gerry: Thanks so much for sharing your thoughts, and my heart goes out to you as well. No doubt, the delusions will progress here, too. We have had some similar scenarios to yours, where my husband is concerned about the one he is rejecting, saying what if she has no where to go. It's very confusing... It will help to know others are dealing with this and that it's the disease that causing it. Still hard though....


Sun Aug 22, 2010 8:44 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Hi Annette and welcome. I am a recent newcomer here and didn't even know that what I had experienced with my husband had a name: Capgras. Do you have any moles, scars or something your hubby can use to identify the 'real' you? When Ken thought there was an imposter in my place I would show him a mole I have on my abdomen to prove it was the real me. So, even if he wasn't verbalizing his concern about an imposter being with him he would sometimes take a peek under my shirt and I would know to reassure him that I was the real deal. I do know one thing just from cruising around this site: no two people behave or react the same way in every circumstance. I do, however find bits and pieces that others have written that mimic our lives and it is very comforting to me right now just to know I'm not alone in this crazy situation we've been catapulted into. Good luck, hope you find something that helps your situation. Sher

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


Sun Aug 22, 2010 10:28 pm
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Sher: Thanks for the welcome. That's a good idea, using an identifying mark. We did use two small birthmarks that are not easily found, and they did help at times. But the delusions come and go, and I forgot about that with all that is going on. Using a scar or other mark might be easier in my case. I appreciate the good tip...
Although no two situations are the same, there are some familiar-sounding stories, and they make it the "surrealness" of Capgras seem more normal. Hope to talk again....


Mon Aug 23, 2010 1:21 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
I tried the body part (or missing part), to help Frank idenify that I was the wife. I had a mastectomy, so suggested that he check if he wasn't sure, guess what, the other two also had a mastectomy??????? :lol:

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


Mon Aug 23, 2010 8:19 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
I showed my husband my knee scar but he didn't remember that I'd had knee surgery in 2006.

_________________
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.


Mon Aug 23, 2010 8:32 am
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