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 New from NJ 
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Joined: Wed May 02, 2012 8:31 pm
Posts: 4
Post New from NJ
Hi All,
I'll try this again. Yesterday I posted an lengthly introduction, but somehow it did not make it through. If somehow it did and I'm not using the site correctly, I apologize if this is a duplicate introduction. I'll try to shorten yesterday's version, but it's been an extremely long journey. My name is Susan and my 89 year old mother was diagnosed as possible LBD many years ago. At the start, 18 years ago, she quite suddenly started having extreme anxiety and obssessive thoughts about things that were not so. Mainly worries about not having paid for anything that belonged to her & my father, having no medical insurance, the car registration, taxes etc. All untrue and unreasonable. Hospitalization and treatment for depression & anxiety did not work, finally after the third hospitalization, electric shock therapy was recommended and administered. Seemed to help with the paranoia, sent home with antidepressants, antipsychotic meds., no appetite, lost weight, stopped taking personal care, was not the same. My father took over shopping, cooking but was not one to question docs or accept outside help. Fast forward to 1998, my parents were forced to sell their house due to development of the area, then moved to my dad's childhood home in PA. Extreme setback for mom, hospitalized again, this time PA doctor started treating for PD and major depression, that's when the possible lbd diag. came in. She did well with this course of treatment, baseline was managable for many years with very slow decline. Fast forward again, 2010 my dad passed away suddenly. By then mom had short term memory loss and had no memory of the event of dad's death. She has been living with me & husband Jim since 2010. Lately I'm seeing further decline with extreme swings, one day seems above baseline, next day extremely delusional and obsessive. She takes Effexor & Seroquel. My question to all is "is this an unusually long course for lbd or could it have started as psychiatric and become lbd?" I realize that this question probably cannot be answered with any certainty, but would like some input anyway. I've read alot of your posts on the different topics and found many similarites with behaviors and so forth. It's been very informative and helpful. I struggle daily with the thought of finding LTC for my mother, but that's a topic for another day.

Thanks for listening.

Thu May 10, 2012 12:05 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New from NJ
Hi Susan,

Welcome to the club none of us wanted to join, but we do help each other through it so I am glad you found us.

I am no expert but I can relate that my 88 y.o. mother was diagnosed with "dementia" in 2005 and diagnosed with probable LBD in 2010 when things really went off the rails. She had dealt with signficant depression for many years, at least 25 to my knowledge. In hindsight, and now understanding LBD a whole lot better, I can recognize things that were happening many years ago, for sure over 12 years, that fit with the LBD symptomology. She was divorced when I was a child and has lived alone since I left for college (I am youngest). She is highly intelligent and until the last years before her disease really got the best of her, she was incredibly adept at hiding her problems, so I don't really know exactly when a lot of her symptoms started--I suspect much earlier than I realized because of her ability to cover up.

At this point, the main features of her illness are extreme impairment of memory, severe depression and other symptoms that I think of as psychiatric--delusions, hallucinations and paranoia--despite various medications, which mitigate but do not relieve these symptoms. The last couple of years have been especially difficult because she is almost entirely disconnected from reality.

So I do relate to your mother's difficult journey. And based on my mother's experience, it would not surprise me that your mother's illness has been there for a very long time. I am under the impression that much about that is not known even by the experts. And everyone's experience seems to be different.

I hope that you will find the forum to be a good resource.

Good luck,


Thu May 10, 2012 12:30 pm

Joined: Wed May 02, 2012 8:31 pm
Posts: 4
Post Re: New from NJ

Thanks so much for replying so quickly. Yes we try to figure out when symptoms started and if events of the past could have led to the depression and psychiatric problems. While there are too many details to get into, my mom's life with my dad was not easy. I don't like to talk about negative things now that he's gone, but he too, suffered from episodes of depression that would escalate into psychosis. He did well with meds and managed to carry on working and functioning in daily life. He really was a good, honest man, but a complete introvert/loner. Mom lived through years of this and when she got sick, my thought was that she could not take it anymore. Oh, I also have a brother that is diagnosed as bi-polar that lived at home far too long and at times was a source of much aggravation/heartache for them. Remarkably, dad stepped into the role of her caregiver when she got sick. He had his own way of doing things, but managed to keep her at home for all those years. The personal care of mom was left to me, I did what I could, always feeling guilty about not doing more. Now that she lives with us, she gets wonderful personal care but, I look back and wonder how my dad held it together for all those years, again remarkable. Still, that's another topic. Again I appreciate your helpful reply and send my prayers for you and all who are dealing with this. Thanks so much. SusanD

Note: I do all my computer tasks at work and at present do not have a computer at home, so if I don't post for a few days, that's why.

Thu May 10, 2012 1:06 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New from NJ

Yes, this would be a very long course for LBD. But not a lot of research has been done on autopsy-confirmed LBD cases, and I can't think of any research on autopsy-confirmed LBD cases with the three different presentations (movement, cognitive, or neuropsychiatric).

There's nothing to suggest that a psychiatric disorder can "turn into" LBD. But LBD can have a neuropsychiatric presentation -- hallucinations, delusions, behavioral problems.

Has anyone considered placing your mom on a dementia medication?

Hope you can find a LTC solution for your mom...


Thu May 10, 2012 1:38 pm

Joined: Wed May 02, 2012 8:31 pm
Posts: 4
Post Re: New from NJ

She was on Aricept long ago, the doctor discontinued, also Exelon patch for many years, again discontinued fairly recently, maybe 6 months. Also, the Synemet was discontinued by neurologist after a UTI and hospital stay in early 2011 where she was just insane. Docs said that Synemet could aggravate dementia symptoms and agreed that she did not have full PD but Parkonsonism at one time. I didn't see a much difference after these meds were stopped, she had all the same symptoms while she was on them such as memory loss, repetitive questions and the like. I guess there's no definite way to tell if the recent decline is the progression of the disease, but it seems like that's what's happening. She recently had blood work, urine culture, CT scan that yeilded normal results.

Thanks for your input.

Thu May 10, 2012 2:06 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New from NJ
Welcome! I don't see any reason why your mother could not have had psychiatric problems, perhaps still has them, and also at some point developed LBD. Not that the earlier problems "turned into" lbd, but coexist with it.

Your comments about wondering now how your dad was able to do the caregiving remind me how hard it is for anyone to know how demanding caregiving really is until they play that role.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri May 11, 2012 2:10 am

Joined: Wed May 02, 2012 8:31 pm
Posts: 4
Post Re: New from NJ

Thanks for your response. Yes, I also read somewhere that AD & LBD could coexist. So it's like who knows?, anything could happen, it might be, could be, sometimes this, sometimes that - nothing makes sense yikes! So sorry to read your story, imagine it's much different to see a spouse with this than a parent.

Hope your day goes well.

Fri May 11, 2012 9:20 am

Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: New from NJ
Hi Susan. Sounds as if it has already been a long, difficult road for your mom and all you who love her. I'm sorry. My mom's diagnosis is AD, but I see shades of Lewy and shades of frontotemporal dementia (sp?), so indeed, who knows? I hope you are helped by the positive (though realistic) approach of folks on this site as much as I have been.

Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.

Fri May 11, 2012 6:02 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from NJ
Dear Susan,
Welcome to the LBDA forums and no apology needed , I am just sorry that you had a problem posting but it does happen . You made it here this time and I hope this can be a forum for information and comfort for you!

Irene Selak

Mon May 14, 2012 6:10 pm
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