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 Capgras syndrome 
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Capgras syndrome
It's maddening, although my husband doesn't see it that way. Sometimes I go along with it, but sometimes I just have to tell him that other people aren't here stealing his money, that I am bringing the groceries to the condo where we live together, and that there are no other people here because I would go out of my mind if I didn't say so. Am I doing the wrong thing? He does not seem as frustrated by this as I do. He understands for 30 seconds then returns to the "other people syndrome"

Although I always cook dinner, many nights he insists on warming up an entire box of frozen waffles for all of our "guests". I end up throwing them away and being on a strict budget this is prohibitive so I have to tell him there are no other people here and that I will heat up as many waffles as he wants. I know this sounds petty, but it is making me crazy. I wish I could let him indulge, but I have to take control of everything. I am alone here 24 hours a day. My heart is breaking for him. I love him dearly.

Ann, wife of 69 year old LBD with Capgras syndrome


Mon Jun 30, 2014 6:51 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Capgras syndrome
Yes, you do have to take control of everything, and that is exhausting as well as frustrating. I hope you can get someone to come in and stay with him so you can take some time out to regroup. You need some respite from CGing before you get sick from the stress. Take care, 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.


Mon Jun 30, 2014 9:30 am
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Capgras syndrome
Dear Lynn,

Please accept my condolences for the loss of your father. It sounds like you have travelled down a dark road with him and have both sufferered greatly.

Thank you for responding to my note. Your experience is greatly appreciated and I commend you for taking the time to help us.

It's so helpful to have this forum to seek advice since I am alone and although some items may seem petty, the frustration at seeing my husband, who was once an intelligent and successful businessman, decline in such a way is heart breaking. I constantly have this heavy feeling in my chest watching him slip away.

Thank you again for your support.

Ann, Wife of 30 years to 69 year old Capgras sufferer


Tue Jul 01, 2014 7:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Capgras syndrome
Ann, I do know just how dark, dreary, scary and tiring this journey is. I felt the same way about my dad, who went from always taking care of his family to being as helpless as a new born baby. Changing roles from his being parent to child was painful, and seeing him making very poor and/or unsafe decisions, and the personality changes were just so awful.

Whether you are aware of it or not, you are going through the stages of grief, even though your husband is still alive. We grieve for what our LO once was, and we know there is no way to reverse what's going on, which leaves us feeling helpless and hopeless. That is why it is so important to take care of YOU. You not only have all the household responsibilities you once shared, but you also have to help your LO try to be positive and cared for. It just isn't a journey you should be doing with no help.

Please come back as often as you want to. There used to be an online chat here which felt like it saved my own life or at least my sanity the first summer my dad was so ill. If that is still available I'd highly recommend it. 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.


Tue Jul 01, 2014 10:35 am
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Joined: Tue Jan 14, 2014 9:34 pm
Posts: 6
Post Re: Capgras syndrome
Capgras syndrome hit my LO two years ago. And it was ugly. So many incidents where I was a bad person, I was stealing or cruel or a stranger out to hurt him. Twice he tried to escape from me in a moving vehicle. A few times he locked me out of the house (fortunately I always have my house key in my pocket!). This has been one of the toughest emotional challenges for me as I moved from his wife to some unknown entity. His agitation finally settled, his paranoia is mostly gone. Now though, I am not called by my name. His cries are a constant call for mama. Mama. Sometimes that can be repeated over and over for hours. My responses to his calls are met with more mama then anything useful like I am thirsty or something. Just mama, mama.

And so it goes.


Wed Jul 02, 2014 12:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Capgras syndrome
I'm so sorry. I wish there were a magic pill for capgras. So many of you are dealing with this awful symptom. 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.


Wed Jul 02, 2014 8:36 pm
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Capgras syndrome
Dear samdeecal,

My sympathies for you and your husband. Sometimes I see my husband in hell, I can tell by the way his eyes narrow when he looks at me. He has done many of the same things. Thinking I'm someone else taking his money, taking his keys, spending his SS check, etc. While he still had the keys I had to hide the car one day. Now all he talks about is "the other people" stealing his car. It's funny how they only remember the bad things. I keep learning from the mistakes I make.

Im wondering who the Capras disappeared with your husband. I know there is no medication for this, but how did you accomplish this? Any advice you could give me would be helpful.

Thank you. Sincerely, Ann (wife of wonderful 69 year old victim)


Thu Jul 03, 2014 6:58 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 102
Location: Phoenix, AZ
Post Re: Capgras syndrome
It is actually a huge relief, to me, to hear other peoples' stories. Even though my Dad's personal struggle with this disease ended in April, the waves of feeling keep washing through, as I look back at the final years with him. I think my relief comes from knowing that we were/are not alone in this. There is a sense of unreality and surrealism that settled in on us. Hearing others' experiences grounds ours in reality, and gives me a way to process it more fully. So in the spirit of offering others relief of a similar kind, I'll share my Dad's journey with paranoid hallucinations. His wife and I are not certain whether he had cap gras, though I don't think so. I think he just had paranoid delusions and hallucinations.

A few years ago, my step-mom arranged for a very nice neighbor to come over to help my Dad with his professional work. This was when he was still connected to his work - there were even a few consulting projects floating out there that we hoped he could potentially work on - but he hadn't been up in his office very much, or if he went there he didn't accomplish anything. Stared into space, dozed off, etc. The neighbor would sit with him, gently ask him questions, and read emails to him - that sort of thing. This also gave my step-mom an hour or so of respite a few times a week. Sadly, my Dad decided after several weeks that the neighbor was out to get him. He thought she and her husband had a scheme going on, and eventually he was convinced my step-mom was in on the deal with them. It was just awful! So she had to end the arrangement with the neighbor - and sadly my Dad's delusion didn't end with it. He would still talk about the neighbor being in the house taking things. This was around the time he began experiencing people in the same bed with them. He even thought his wife was carrying on an affair right there in the bed next to him! It was heartbreaking! So hard for her to have him believe this, and at the same time we knew he was living in a personal hell because of it. This was also around the time his most stubborn hallucination began about a little girl who was living in their house with her little brother and their parents. Luckily she and her family were not frightening to him, but he wondered why they were there, and he couldn't be convinced that they weren't really there. Though she wasn't frightening, she did throw these "hooks" into the air, and these would stick in Dad's eye and cause him pain. As with so many LO's described here, Dad's eyes were very dry and frequently painful for him. The hooks, I think, were a variation on the black fuzzy things he saw everywhere. Eventually, with yet another modification of his medications, most of the paranoia went away (for awhile), though the black fuzzy things and spiders were frequent visitors.

My brother and I both live in different states, but we would visit whenever we could - several times a year. Whenever we visited, Dad knew who we were, and he never had a negative feeling about us. In fact, his wife would talk to us about the things she needed our help with. She knew he would listen to us, and trust us without reservation. The word "heart breaking" keeps coming to mind. Here was this amazing woman, who couldn't possibly have taken better care of him, whose life was in ruins because of it, and yet he didn't trust her. As with so many of you who are full time caretakers, she had her good days and her bad days with him - but in my eyes, you are all saints for sticking with your LOs regardless of what might come next. Prayers and warm wishes to all of you who are still in the LBD trenches!

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Thu Jul 03, 2014 9:41 am
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Joined: Tue Jan 14, 2014 9:34 pm
Posts: 6
Post Re: Capgras syndrome
Glad to share a little with others who understand. Ann it is a difficult road. In time his capgras became less and less frequent. There are still moments when he looks at me as if I am going to hurt him, but that has not been as difficult as the months prior. I have so many stories about his going off, wandering to get away and such.

I had to secure the yard, fortunately we are fenced and gated. We live in a rural area with quite a bit of acreage and a lot of areas that he could fall and get hurt. Last month I had to secure all the doors in the house so he could not even get into the yard. But since fathers day he has lost most of that agitation and just seems lost most of the time.

There was also periods where he would not know who I was, married to him for 35 years, but he knew his son and would trust him. His son that has suffered from various addictions much of his adult life! Just so hard for me to understand not trusting me and yet his son was ok? Until I researched and discovered what LBD is really about, and that capgras is a significant problem. That knowledge did not make those difficult episodes easier but at least I understood where his mind was.

My best to all who are dealing with this. Hang in there.


Thu Jul 03, 2014 10:32 am
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Capgras syndrome
Dear Molly, I am sorry for you for the recent loss of your Dad. Your situation is very similar to mine. I tried to help my husband with business but it took a gradual turn and i had to make him stop. It took a long time but he did realize that he couldn't function in this way anymore. Unfortunately he is sometimes delusional thinking the "other people" here are helping him to get back in business. I have been telling him he is retired now and have been trying to focus him in different areas. Everything frustrates him. He will not read ( he used to be an avid reader) or do his crosswords. I've tried to get him involved in brain games on his computer, but to no avail. My next step is to try to get him to adult day care where I know he will receive more stimulation. I just don't know how to get him there. I wish they would come up with another name than Adult Day Care Center (the sign outside will probably scare him away). I'm thnking of asking the proprietor to tell him they need volunteer assistance in some way. This might help.

Thank you for this forum. I am so grateful as no members of our support group can help me with this syndrome.

_________________
Ann, Wife of Beloved Husband with LBD/Capras Syndrome and Parkinsonism.


Sat Jul 05, 2014 7:12 am
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Capgras syndrome
Dear samdeecal, Thank you for your response. I am glad that your husband's syndrome has faded, although i understand how disheartening it is to see your husband struggle with your identity.

I am hopeful my husband's Capgras will fade too, but there may be other aspects of this disease that will appear. I have accepted that this is just a warm-up for me. to address future issues.

Thank you for your response.

Ann

_________________
Ann, Wife of Beloved Husband with LBD/Capras Syndrome and Parkinsonism.


Sat Jul 05, 2014 7:22 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Capgras syndrome
Ann, I think there is so much scrambling that is going on in their brains, that trying to get them involved in things to stimulate their brains like puzzles, games, even reading, really puts them on overload. Does he like music? Perhaps playing soothing music for him and reducing stimuli will do some good. I haven't heard of anyone trying this, but as I'm writing to you I thought of this -

What if you created a non-stimulating environment for him? Say, the bedroom, where you reduce the number of things for him to look at. If he has a favorite place he's always loved that was relaxing for him and you have photos of it, have poster-sized enlargements made. (these are really cheap these days) Have a few of those on the walls, have soft lighting and play soft music. Maybe more non-sensory stimulation could help reduce some symptoms for a time.

Just a thought, and if anyone has tried this, please share if it's worked at all. 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.


Sat Jul 05, 2014 8:08 am
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Capgras syndrome
Hi Ann; My husband also hllucinates but at this time is not afraid of the people he sees. He doesn't trust me and is always questioning me about every thing. He has lost his peripheral vision and so cannot read anymore, When he is frustrated then I get it. He calls me a *, etc. This is hard for me as my first marriage was an abusive one and now this is so hard to take even though I know that is not my husband doing this but Mr. Lewy. My husband was never like this and when it happens then he is as upset as I am by it. This is truly a very wicked disease and all we caregivers can do is our best and try to survive it. I find that the Day Program helps me greatly. He finally agreed to "just go and take a tour and see what it was all about." When we finished the tour and went to the coordinators office I told him it was Day Program or the Nursing Home and that it was his choice which one he wanted. He agreed to try it out for one day. When he went for the day he liked it very much and went each week for a day. We are now up to three days a week and this is a real blessing for me. I don't think I could do this any longer without that program. Have the Doctor/Nurse recommend the program to him as something that will help the both of you and see if you can get him to at least try it. Cheering for you success. Anne


Sat Jul 05, 2014 3:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Capgras syndrome
Anne, it's great to hear that the Day Program is working for 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.


Sun Jul 06, 2014 6:05 pm
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Joined: Thu May 15, 2014 10:41 pm
Posts: 102
Location: Phoenix, AZ
Post Re: Capgras syndrome
Ann - LBD has a few blessings mixed into the many many challenges. The fact that my dad was so focused on his career may have helped him during the later stages of the disease. At some point, you may want to go along with his belief that he is still working, or able to work - but you may not be at that point yet. There is first the need to disconnect from the "real" world of work, which can be very painful. Eventually, though, many of the things my dad saw - any patterns in the light, the carpet, etc. - became in some way connected to the geological forms and maps he knew so well. He would study them, and describe to us what he was seeing (in the last 6 months or so, it was not always possible to understand what he was saying, but it was clear from his tone that he was talking "work," and he seemed to really enjoy it - he'd get a break from the disturbing people and things that he otherwise might see.) I was grateful that his mind never stopped thinking about his work, because it really was his lifelong passion.

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Sun Jul 06, 2014 8:55 pm
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