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 Dad (83) not yet diagnosed but his symptoms sound like LBD 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3310
Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
I hope you can find some solutions that work for you and your mom. Has your mom gone to the Area Agency on Aging to see if there are any resources that might help her? My thoughts are with you during this very difficult 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.


Mon Oct 21, 2013 4:06 pm
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Joined: Mon Sep 30, 2013 11:14 pm
Posts: 10
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
I guess we'll just hope between Mr.Jekyll and Hyde that we get the Dad who is reasonable and understands that we are worried about him and are doing whatever we can to help him. Thank you again everyone for your helpful insights. I read several of your posts to my Mom and it gives her some comfort that there could be a concrete reason for his behavior-it just may take a while to get there.


Mon Oct 21, 2013 5:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3310
Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Leslie - When my dad would get super angry and agitated, I'd tell him (and myself) that there was something going on in his brain that wasn't normal, and that I was working very hard with the drs. to find something that would help him. That seemed to calm him down, at least momentarily, and it sounded a lot less scary than some other things I could have said. Sometimes he was so out of control with his anger that I'd just have to walk out of his room at the ALF and tell him I'd be back the next day when he was calmer. Then I'd go out to my car and cry my eyes out. That was necessary before making the 40 mi. trip back to his house or the 500 mi. trip back to my house. But, he was in a place where he was getting good care by people other than family members, so it was easier than the situation you and your mom have with your dad. Wishing all the best for your situation, glad you've shared some of the forum with your mom. 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 Oct 21, 2013 8:53 pm
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Joined: Mon Sep 30, 2013 11:14 pm
Posts: 10
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
I had an excellent and very reassuring conversation with my parents' family doctor today.

He has a good rapport with Dad and feels he can address his various issues without making Dad upset or suspicious. My long letter was very helpful to him since it provided some new information he had not known about. So, fingers crossed that between us all we can get Dad the help that he needs. Sounds like a referral to a psychiatrist and neurologist will the next steps.
I will keep you all posted. Again, thank you for listening.


Tue Oct 22, 2013 10:15 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Good luck! Sounds like your parents' doctor has the right idea for next steps. I hope that the neurologist and psychiatrist can get a good diagnosis and help come up with a treatment plan. It's very hard to work with someone who is suspicious, depressed, and not altogether in right mind, though.
My thoughts will be with you.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Tue Oct 22, 2013 11:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3310
Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
All the best, Leslie, 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.


Wed Oct 23, 2013 9:01 am
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
*update*
Well, my Dad had an MRI and the found a small cyst at the base of his skull. He saw a neurologist and the cyst is of no concern I guess but the dr. wants him to get an electroencephalogram to check his brain waves. That is scheduled for next week. They gave Dad more memory tests and as far as he tells it he passed with no problems.

Dad now is angry with their family doctor for ordering the MRI. Dad doesn't know that my Mom and I have spoken to the dr. about Dad's behavior and he is looking for what might be wrong at our insistence. I don't think Dad will be willing to talk to a geriatric psychiatrist at this point.

Dad remains on Zoloft and it has calmed him down a bit. The dr. told me that Dad has OCD and it's been a problem for years. The false "infidelity" issue is still under the surface. Dad said in an off hand comment that, "it is resolved for now".

That is the latest. Again, thank you for listening. :)


Wed Dec 04, 2013 3:18 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
It's such a long and difficult journey just getting to the diagnosis and then it doesn't change anything for the patient but it helps to know you're not going crazy! Hang in there! :)

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


Mon Dec 09, 2013 1:51 am
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Joined: Tue Dec 31, 2013 2:30 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Hi, I am new on this forum as well, but reading your posts, I can relate to what you are going through. My mother has had been treating my father horribly which I believe is the LBD as she would have never done the things she is doing ever before. Although she does not accuse my father of infidelity, she accuses him of not wanting her to have friends and not letting her do anything ( which does not seem true to us- in fact we all went on a vacation a few years ago, she wanted to go on and she said she couldn't have fun as my father stopped her but we were there and couldn't make sense of it all). We finally had to move my father out as he just couldn't do it anymore. My mother is refusing to leave her home but my brother and I check on her daily. We feel eventually she will have to do something but can't force her and feel it is best to just check her at this time. ( We know we are taking a chance but best choice at this time). My mother as well passes all the mental tests as well and her family Dr is not knowledgeable or helpful, but now my mother has taken me off the list to talk to her. My mother was in a psychiatric ward as my father had to call 911 and the officer who arrived noted she was mentally unstable and she admitted to suicide threat ( which she has done for a while now, but never admitted to anyone but my father and I before that). The psychaitric ward was useless but at least they did not drug her as I did tell them I did not recommend that and would sue if they did and she regressed. But they did not talk to me as they said they couldn't without my mothers OK and she was able to make her own decisions according to them. If anyone has any suggestions on how to get my mother the help she needs I would greatly appreciate that. So far we feel the best thing we did was get my Dad out of the situation and telling my mother it was getting too much for her to take care of him and he was keeping her from doing things so we made him leave ( she is OK with that explanation), but we are worried she is home alone and won't even allow us to come daily although is willing for me to call daily and us to visit her weekly at least. My one suggestion is try to live in their world- don't argue has worked best for us.My other suggestion is to get them to a neurologist who is familiar with LBD, but I have to figure out a way to get my mother to one as she won't go. Lastly keep reminding yourself this is not the person you know, this is a terrible disease that steals great people. Good luck. You are not alone, but this is a long hard road and it will get worse before it gets better and there is no real good ending.


Thu Jan 02, 2014 7:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3310
Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Joan - who has POA for your mom? Have you been to an elder care attorney or an area agency on aging? I think you may be able to find some help with both of those resources. Also, have you documented (including dates and times) all of her symptoms? If not, I'd keep a journal of just what's happening and give a copy to her drs. I'd also get the LBDA pamphlets so you can hand them out to people treating/trying to help her, because they may be clueless about LBD.

If she isn't safe in her home, that's a big issue. You probably can't force her to do anything she chooses to not do, but getting a social worker involved to do an assessment may be the best place to start, and also an elder care atty. Good luck, let us know what you do and how it works out for you. 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.


Thu Jan 02, 2014 9:16 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Welcome to the forum, Joan! I do remember those early days when my Mom thought everything was my Dad's fault. It was very draining on him! The LBD diagnosis made it much easier to handle - as then you know it's the disease talking and not your Mother/wife! We had a homecare nurse who was able to come to the home and assess my mother on a regular basis. She was then able to hook us up to other resources. It definitely helps to have a go between as family becomes the foe at least at times it seems.

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


Tue Jan 07, 2014 3:33 pm
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
It's been sometime since I posted and I wanted to give everyone an update. With the bad weather back east, many of Dad's appointments were often canceled and rescheduled. He finally did see a neurologist and he has had an EEG. The diagnosis? They didn't find anything suspect or worrisome on the EEG. The neurologist gave him several different memory tests and he passed them with flying colors. Dad doesn't need to go back for a follow up.

No LBD or Alzheimer's. No explanation of his horrible behavior towards my Mom other than- because he wanted to behave that way? *sigh*

It will be interesting to see how the week goes as the lady who once lived across the street, whose grandson was the focus of the infidelity accusations, has passed away. She was my Mom's close friend and Mom wants to go to her services. Dad is agreeable to this and when the grandson called to tell my parents of her passing my Dad offered his sincere condolences to him.

I'm assuming the OCD meds are helping him and have dialed down the processes that make him think about things so irrationally. I just don't know.

Thank you again for listening.


Thu Mar 13, 2014 3:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Leslie, I wouldn't accept that he doesn't have dementia just because he passed memory tests. Memory is not usually an early symptom of LBD. Rather it's things like executive function, visuo-spatial problems and behavioral changes. My husband also developed muscle stiffness.

_________________
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.


Thu Mar 13, 2014 4:24 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Hi Leslie, I agree. The thing with LBD is that everything can show up normal on the tests many times and it's only the people that know the person that can really see the behaviour change. We experienced the infidelity thing also so I know what you're going through. It took us probably 5 years and many many challenges before my Mom got a real diagnosis. You may just have to keep going back as the symptoms progress/change...

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


Mon Mar 17, 2014 12:19 pm
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