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 Sharing w Caregivers of LBD Patients with Capgras Syndrome 
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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
It sounds like I was lucky, then. Ken is the one who originally sought out my mole to identify me. Whatever works! 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.


Mon Aug 23, 2010 11:12 am
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Joined: Sat Jun 05, 2010 11:02 pm
Posts: 5
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
This is really the only problem we are having with my dad now. After being diagnosed in May we spent most of the summer adjusting his medicine until we finally seem to have it at the appropriate levels. His doctor started him on the Exelon patch about a month ago and that finally took care of all the symptoms he still had except Caprgras. It probably happens about once every two weeks but it last for several days. He thinks there is a man dressed as my mom with him. He thinks my mom has gone off with some men. Sometimes he asks to see my mom's drivers license and that seems to satisfy him. He tells people that call that she is not there and he gets very pitiful about how he doesn't understand why she would leave him and he needs her. I always ask to talk to the man that is with him and of course my mom gets on the phone. She doesn't hear very well so she doesn't understand most of what he says to me.

I have learned that there is little to gain by argueing with him. You can't reason with him. I just listen and sometimes sympathize that is sad that he is alone. This seems to satisfy him. I keep reminding my mom that he can't help it but sometimes I think she just tires of dealing with it. They have been married for 68 years so it is sad for her that her husband doesn't recognize her.

Since he started on the Exelon patch he has been much calmer. So he accepts whoever he thinks is with him. He did at times before the Exelon patch want to fight with this person and tell them to get out which was very hard on my mom. Now he accepts that there is someone else with him. He told me tonight that "fellow was real nice."

It is all very hard. It is comforting to know that other people are dealing with the same issues.


Fri Sep 03, 2010 9:58 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
Yes, I'm sure your mother does tire of it. I've been living with it for over two years and it's constant now. :-(

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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.


Fri Sep 03, 2010 11:05 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
I can relate to just about everything that everyone else has posted. Capgras, the "affair" (with his Dr. none the less),the mood swings ,the delusions. As far as the capgras goes, my husband thought we were 3 different women, me and 2 of his exwives. One of which passed away recently. The only way I could 'prove' who I was, was to sit at the piano, play and sing "Sweet Beulah Land", his favorite song. The other 2 werent musically inclined I suppose. But this did pacify him for a while. There was even a time that he thought all 3 of 'us' were living in the house with him. Now, that was hard to explain, but only one of us would show up at a time. So I just ask 'who am I' and see what answer I get. Then I play along. Next time I may be one of the others. The other delusions come and go, also. For the past 2 weeks, he thought he has bought a new, fast, hot car. Jet black and chromed out.Has only one seat. Has 24 forward speeds, and purrs like a kitten. (But he has not been out of the house.) I guess he drives it in his dreams. Just glad I didnt have to pay for it. :) I remind myself a thousand times a day that it is the disease, not my hubby. Especially when the affair thing comes up. My thoughts and prayers go out to each and every one here. I feel we are a special group. Caring beyond measure. Giving of ourselves, even when there is nothing left to give. Our loved ones deserve a better life, but we are the ones that stand in the gap, to make sure they get all that they do deserve. Sometimes I find myself reading old posts. Just to be sure I havent missed a thing. I want to stay on top of everything. I thank the Lord everyday for this website, and for the web. Sometimes it gets awfully lonely, but I have a comfort in knowing that 'I am not alone in this battle'. Keep good thoughts, we know things wont get better, but we can cope. Love to all, Mistyeye...


Fri Sep 03, 2010 11:54 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
Well said, Mistyeye...sometimes I think when we have nothing more to give the Lord makes up the difference.

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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.


Sat Sep 04, 2010 12:31 am
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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
Yesterday went as usual, Frank was a bit confused, in and out of the house while I worked in the yard most of the day. It was nice after supper so I asked if he wanted to go for a walk. We did our usual mile route and he was fine. He rested on the porch for a while and then I asked if he wanted to go to bed and he did. Went to the bathroom but when I tired to lead him into the bedroom he got stiff and said that wasn't his room and he wasn't sleeping in that bed. He went back on the porch so I decided to try again a little later. When I went to check, he was gone. I checked the house and around the house then started driving the neighborhood at 9:30 PM. I finally saw him coming up the road but he passed the house, when I caught up to him he said he was tired and couldn't go any further. I talked him back on the porch and he did go sit in the den but still wouldn't go into the bedroom. It was my fault, I was call a collection of names, but when I asked what I did, all I get is you know, you and others have been playing mind games with me all day. :roll: He did wake around 5AM and had breakfast and is fast asleep again, in the den. We're having a cookout with friends and family tomorrow so this should prove interesting. I am also 1 of 3, never knowing which one I am. Good luck to all the caregivers dealing with capgras!!

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


Sat Sep 04, 2010 9:46 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
Gerry, I'm doing a BBQ tomorrow, too! Lets hope things go reasonably well for all of us!

_________________
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.


Sat Sep 04, 2010 3:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Annette,
Welcome to the LBDA forums, sorry for your need but glad you have found them.
Capgras is something we dealt with for a short time, not as long as some others here and I basically went along with it because if I tried to reason, it just agitated him more, there were times when he asked where the "real" one was of me I would actually leave the room and try to appear as the "real" me, sometimes it worked but not all the time.
At the time I wished there were 3 of me !

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Irene Selak


Sat Sep 04, 2010 5:29 pm
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Location: WA
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
Irene, I surely wish there were several of me, too! I even wish I were the 'guy' he sometimes thinks I am--maybe I'd be able to schlep him around easier. ;-)

_________________
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.


Sat Sep 04, 2010 6:51 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 Irene: I appreciate the welcome. I apologize for not responding sooner but just had a chance to check the web site again. Although my husband is in the early stages of LBD, there are challenges. Capgras is one of the hardest challenges we have faced. Since 6/21, when his Exelon dosage was changed to 9.5 mg, he has improved overall. The Capgras incidents are still there, but they are much calmer now. They come for about three weeks, then are almost gone for about two weeks, etc. It is so calming to know that this is normal with Lewy Body disease and that other people experience the same things.

Thanks for all your support.


Thu Sep 23, 2010 2:07 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
Hi Annette - I'm glad you have found something that is helping the Capgras symptoms. The pattern you've noticed is quite interesting. I hope you are able to take care of yourself during such a stressful time. 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.


Thu Sep 23, 2010 2:39 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
Post Re: Sharing w Caregivers of LBD Patients with Capgras Syndro
My husband was sure that he had at least 3 wives, one was quiet and caused no problems, one was lots of trouble, and he was thinking of divorcing her, and one was perfect. I think I was the one always causing problems. Since he has been in the nursing home, he doesn't seem to be as bad, since I am not his primary care giver, he seems to know who I am most of the time, although when I push him around the home he will ask the aids where his wife is. ( I push him for about an hour every night, just to keep him awake, as he tends to fall asleep right after supper, and then wakes up in the wee hours and ends us sitting in the hall, pushing him around the nursing home helps to keep him awake. )

While he was at home, he wanted to have DNA tests done, as he was sure I was not the kids mother. They assured him I was but he didn't believe it. He wanted copies of our marrige license, checked out our high school year books, anything he could think of that would prove who I was, or wasn't.

He fell and broke his hip last December 28th and has not been able to rehab, and therefore cannot walk, which is why he is in the nursing home.

He askes to go home many times a day, and doesn't accept the fact that he isn't able to walk. He is sure that he can, "why he walked up stairs just this morning," he will tell me, the nursing home is all on one floor.

The delusions, or hallucinations are frequent, usually involve dogs or cats, yesterday he was really upset because he was sure they killed his cat.

He is extremely jealous, and does not like his roommates wife, because we talk. I can talk to our kids or other family members, but he doesn't like it if I talk to the room mates wife.

Life in Lewy Land is not fun.


Tue Oct 05, 2010 11:23 pm
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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
When my husband was in a dementia care unit for a few months last summer [while I sold our house and bought another] I visited him every day and noticed that he seemed to know who I was, then, just as you have observed. I've heard that familiarity breeds contempt but not necessarily duplication! :lol: He certainly had more respect for me then than he does now at home. I'm not sure if it's being with him 24/7 or the menial, sometimes undignified, tasks I must perform for him that leads him to treat me with contempt and rather more like a paid servant than his wife. I know that, when he was in the facility, his whole face would light up when I arrived. That was kind of nice!

_________________
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.


Wed Oct 06, 2010 12:18 am
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