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Joined: Thu Aug 15, 2013 5:39 pm
Posts: 30
Post Newcomer
Hi,
I am Connie (66) and my husband (74) has I believe "probable" LBD. He has not been Dx yet. His father died after a lingering illness and Don doesn't want to die like that. So I've been at a loss as how to bring up the subject so he can get dx. Plus, lately he gets confused when the conversation goes from generalities to specific which leads to some heated discussions (so I am learning to think twice before getting mad at him). I have had some "he does/ he doesn't have LB" moments, but my daughter has noticed the problems also. So now I'm trying to gather my courage to talk to him this weekend. I work full time & evenings are not good deep conversation times for him. Right now I'm trying to figure out how to disable the Fox news channel so he won't be so agitated at night.
It just feels good to talk to someone who understands.
Thank you for listening/reading.
Connie


Fri Aug 16, 2013 2:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Newcomer
Welcome, Connie. Right now, do you think he really needs to know he has LBD? Can you perhaps help him with his symptoms but not go into details about this disease? If he's still really high-functioning and wants to know, that's one thing, but if his cognition has deteriorated a lot, knowing about this disease may just stress him and make the symptoms worse more pronounced during the discussion.



My dad's cognition deteriorated so much overnight, that by the time he asked me what was wrong with him I just said "something is going on in your brain and I'm working with the drs. to find out what's happening and see if we can get you on some meds to help you." That was good enough for him at that time. A month earlier he would have drilled me for more and better answers. I continued to use that line because it calmed him down, and it gave him hope, despite the fact that there was no hope for him ever getting better. But he didn't know there was no hope because his executive functioning was so diminished by this point.

You'll probably read a lot of postings on here about talking with LOs about their disease, and also how important it is to not engage in "correcting" them. Ex. if he is hallucinating, like many do, "I'll get those dogs/children/lions out of the corner so they won't bother us anymore" instead of saying "there aren't any ... in the corner." It just gets them upset and angry so if you can "go with the flow" both of your lives will be much calmer.

If you have specific questions, you can ask those in the appropriate forum topic area and you'll get more responses, FYI. Come back often, there are lots of us here for support and info. 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.


Fri Aug 16, 2013 3:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newcomer
Connie, welcome to the forum! You've come to the right place for information and support. If nothing else, we have been or are going through the same thing. God bless!

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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 Aug 16, 2013 4:36 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Newcomer
Welcome to the forum Connie! You can get lots of feedback here and then you do what feels right! With my mom, there was always other ailments so going to the doctor was a frequent thing. Finally getting an LBD diagnosis didn't seem to bother her at all - but I think by that time she was kind of fed up with all of us thinking there was something wrong with her... Good luck if you have the discussion!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Aug 16, 2013 4:59 pm
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Joined: Thu Aug 15, 2013 5:39 pm
Posts: 30
Post Re: Newcomer
Thank you for the input. I think we will take a wait and see approach.


Sat Aug 17, 2013 1:37 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Newcomer
It's such a tough disease! If your husband is anything like my Mom was, it was so hard as she'd have all kinds of symptoms and then she'd be back to normal and you'd think, oh, the symptoms weren't that bad - it was just a temporary glitch. Then it would start all over again. It took us a looong time to get to the diagnosis part. I think the diagnosis was really good for my Dad's sanity though. :|

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Aug 19, 2013 1:21 am
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Joined: Thu Aug 15, 2013 5:39 pm
Posts: 30
Post Re: Newcomer
Perhaps it is selfish,but a dx would give me peace of mind knowing for sure if it is or isn't.


Mon Aug 19, 2013 11:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newcomer
Sadly, the only way to know for sure is a brain autopsy after death. We were told that diagnosis is based on the symptoms and responses to medication but that it isn't certain.

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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.


Mon Aug 19, 2013 3:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Newcomer
Connie - what Pat just said is what we all have to deal with - there is no way of REALLY knowing while the person is alive. Yes, it would give/would have given all of us some closure just knowing what "it" really is. But, at this point that isn't possible so you have to do the best you can do in sort of vacuum. It makes it that much harder, IMHO, when you don't have a definitive dx. Read as much as you can about symptoms, behaviors, meds, how to deal with all of the previous, and come here for support when you need to. And, if there is a local support group you can join that may be helpful too. I found it helped immensely and I made some very good friends there. Best, 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 Aug 19, 2013 3:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newcomer
Welcome Connie,
I hope you find some answers and comfort here on the forums!

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Irene Selak


Mon Aug 19, 2013 5:33 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Newcomer
Hi Connie, Definitely not selfish. It really helps to keep you sane once you have a doctor telling you it is LBD. Otherwise you wonder if it's really you who's hallucinating and the worms in the rug are really there, like my Mom said they were. With the diagnosis to hang on to (even though there's no absolute proof) you start to see that enough of the symptoms are there and it is a disease you're dealing with.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Aug 23, 2013 6:56 pm
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