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 New from New York 
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Joined: Fri Mar 15, 2013 4:04 pm
Posts: 4
Post New from New York
This is my first time on here so please be patient! I am the caregiver for my husband of 37 years. He is now 64 and I am 58. He was originally diagnosed with Parkinsons in 2010 although he had symptoms long before that. Within a few months of the parkinsons diagnosis he began having mental decline issues. He sees a neurologist, a geriatric dr. and his primary care dr. Initally in 2010 while in the hospital the dr there said he had LBD. I had never heard of it and when I researched it I decided it was the disease from hell.

I know now that he in fact does have LBD, he has every symptom. He has started to be more delusional (thinks our living room is going into a sink hole) We live in upstate NY, no sink holes here. I guess I just need to be more prepared for what comes next. It's hard to tell which is worse, the parkinsons or the mental decline. Seems like everything is overlapping, is that normal?


Sun Mar 17, 2013 10:09 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from New York
Glad to see you made it here, Welcome to the LBDA forums, sorry for the need but I glad you found us. You will find many answers and lots of really nice people to help you along the LBD path. I also think it would be a good idea to get yourself hooked up with an online support group, there is a group just for spouses, here is the link !

http://www.lbda.org/node/21

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Irene Selak


Sun Mar 17, 2013 10:24 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New from New York
Welcome. You will be glad you found this group. And to answer your question about overlapping.....what you will learn, as we all have is that there is no one LBD patient that is the same, they all seem to have, at one time or another, the same symptoms, but they come and go, or come and stay different lengths of time. My husband was also diagnosed first with PD, more than 15 years ago (he is now 78), it progressed very slowly without tremors. Many of the symptoms we attributed to the PD advancing, then about 5 years ago the cognitive changes began with a bang. We had people sitting around the house, I was "the other wife", and we had another house just like this one (Capgras), and the diagnosis of LBD. I too had never heard of it.

You will learn so much from everyone, and get so much support. This is also a place that you can voice your fears, frustrations, and even anger, and everyone understands and knows what you are going through. So welcome to the club that no one really wanted to join! Carol

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


Sun Mar 17, 2013 10:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: New from New York
Welcome, and sorry for your need to be here. Do you live in the Plattsburgh area? I believe there is a new support group in that part of NY where you can "attend" support groups via phone, internet, etc.. so you don't have to go to a live meeting if that doesn't fit your schedule and other CGing duties. I live just across the lake from Plattsburgh and heard about this at a party a few weeks ago where many of the people there work in health-related jobs. Sounds like a great idea. 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.


Mon Mar 25, 2013 7:16 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: New from New York
CCBell, my husband Gary has just recently referred to me as his other wife. He keeps telling me he has to "dump me" because he has been married to Elizabeth for almost 40 years. I tell him I am Elizabeth, he just says not you the other one, then he tells me not to confuse him.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Tue Mar 26, 2013 2:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New from New York
lizg wrote:
CCBell, my husband Gary has just recently referred to me as his other wife. He keeps telling me he has to "dump me" because he has been married to Elizabeth for almost 40 years. I tell him I am Elizabeth, he just says not you the other one, then he tells me not to confuse him.


Capgras delusion. My husband had this, off and on, for three years. It was awful. Sometimes he would want me to phone his wife and I would call my cell phone and let him talk to me on it. I would even tell him that it was me standing right in front of him but he never believed me. There is no dissuading them from delusions. Don't even try. The good news is that, at least for us, this delusion seemed to phase itself out [in favor of other delusions]. Believe me, it's hard to take care of someone who considers you and impostor.

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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.


Tue Mar 26, 2013 4:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from New York
You are right Pat, it is a Phase and it doesn't last, I actually look back on those years and have come to a point where I can joke about it (Capgras) but I can tell you when it was happening I was half out of my mind!

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Irene Selak


Tue Mar 26, 2013 7:26 pm
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New from New York
Irene, Pat, and Liz....yes, Norris used to be sure that there was this house near ours that was exactly like ours, and the woman there said she was his wife and she looked exactly like me, he was always worried that she would take him away. I could usually joke him out of it by asking if she had fewer wrinkles, or if I was the "beautiful" one? Once he told me that if I went with him his friends would think he was having an affair because his "real" wife lived in the other house! Yes, that has phase has passed. But what I have realized is if I am having a bad day, or get frustrated, or try to hurry him, the tone in my voice, or if I get mad or snap....it impacts him, and later he will say to me "who was that nice person that was here before"....."or who was that loud, mean person that was here last night?" and in retrospect I don't think I was really being that loud or mean, but to him I was.

Even though the Capgras has gone, the hallucinations and delusions --- which arrived first 3 years ago --- are still here, almost all day every day. I am thankful that they are "nice" hallucinations, the ones he refers to as his Parkinsons' people (cognitively he remembers he has Parkinsons, but not Lewy) they just sit around, he told me they were probably handicapped because they don't walk or talk, I told him that is good then we don't have to feed them.

His Parkinson's meds (Sinemet and Stalevo) don't work much any more-we are reducing the amount to see if it reduces the hallucinations, so far it doesn't. Seroquel seems to reduce the anxiety and keeps him from wanting to pack up the house every day so we can move "home", and it helps him get a good night's sleep.

Oh the joys of this trip through Lewy Land. Carol :lol: .

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


Tue Mar 26, 2013 8:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: New from New York
Oh my, I'm glad you can find some humor in all of this! It helps break the stress of CGing sometimes, doesn't it? I'd think that this spousal capgras situation must be about the toughest thing to deal with. My dad only seemed to have that sometimes with his CG that he liked the best, whom he thought was the housekeeper/nanny who was part of our family for many years and died 30+ yr. ago. And, with my son, whom he thought was his "nephew". It must be so hard when the CG is a spouse and the LO thinks you are an imposter. Big hugs to all you CGs out there! 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.


Tue Mar 26, 2013 9:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: New from New York
When my husband had Capgras, one time when I kissed him he said, 'What do you think my wife would say?'. :lol:

_________________
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.


Tue Mar 26, 2013 11:53 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: New from New York
Gary asked me what I would do when the other wife comes back, I said I would probably take that trip to Ireland I always wanted to take, he told me to have a good time. He also has taken to cursing a little, he never used foul language. Sometimes my neighbors come over and use the pool, I told them that if Gary gave them the finger, not to be offended. :lol:

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Wed Mar 27, 2013 10:37 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New from New York
I love that reply....I want to go to Ireland too...can I come with you? My husband has lost the enthusiasm to enjoy travel, games, etc. that is what is the saddest about Mr. Lewy....they lose the enjoyment of life. Carol

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


Fri Mar 29, 2013 8:56 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: New from New York
Carol, when that trip to Ireland comes around, I will certainly let you know. I told my brother about Gary thinking he had another Elizabeth for a wife, and my brother said "At least he married you twice" :lol: Gary has also lost interest in things he always loved, especially sports (NY Yankees and Duke Basketball) were his favorites, he doesn't pay attention at all anymore.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Tue Apr 02, 2013 11:30 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New from New York
Liz....I had to respond when you mentioned your husband no longer enjoys watching Duke. I know exactly, unfortunately my husband Norris is a diehard Tarheels fan and an alum....(doesn't care much for Duke), and this year he kept saying he wanted to watch the games, but could never sit and finish a game and wasn't even aware when UNC lost .... so sad, his favorite sport on TV is now gone for him. I did become the "other" "mean" wife Carol...when I told him that North Carolina wasn't in the tournament any longer! His Parkinsons meds are no longer working, he can barely walk in the afternoons, and the Seroquel for anxiety/hallucinations isn't helping as much either. Just a few more steps along the Lewy trail! :cry: Carol

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


Tue Apr 02, 2013 8:08 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from New York
We need to move this conversation along , we are way off track from orginal posting, it makes it hard for new people trying to navigate the forums, Thanks for the understanding !

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Irene Selak


Tue Apr 02, 2013 8:22 pm
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