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 new from Pompano Beach, Fl 
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Joined: Thu Jul 19, 2012 3:37 pm
Posts: 8
Post new from Pompano Beach, Fl

Joined: Thu Jul 19, 2012 2:37 pm
Posts: 2 new from Pompano Beach, Fl
I have recently moved back home to live with my mother and have wonderful support from my sis. My sister is married and has her own business and still lived here with mom when our dad passed in September. My sis was on her own from Sept. until June 26th when I finally arrived. It's very hard, but I am glad I came. She has had LBD among other things for quite some time, although our Dad hid it from us. I think he thought it was his cross to bear. So here we are with surprises day by day. The hardest part is that she's lost her nouns. If she uses any at all, they are not the right ones. Trying to figure out what she is wanting to say is frustrating for both of us. She has delusions and hallucinations constantly as well as OCD. I've been lurking here for nine months. I've learned a lot, but still get really confused, myself. She had mental issues before her LBD and they are compounded. SERAQUEL was the worst durg ever for her. They made her hallucinations even worse...and they stayed that way. She is on an anti-depressant and Xanax. She has been on a low dose of Xanax for YEARS..... I am now timing her OCD episodes and anxious periods where she pulls on her clothes, wants be to cut them, etc... At the 1st indication of this behavior, I dose her with .25 mil. of Xanax. Pattern seems to be 2-2.5 hrs only. Violent outbursts are shorter since the anti depressant, but today she had a doosy.... anyone out there in my area of southeast Florida? My post name is Jenny1955 as that is what my mom calls me late at night although there has never been a Jenny anywhere near her.... I go with the flow. My real name is Linda.
Thank you for listening. I'm sure I'll be posting questions and eagerly awaiting all your good ideas!
Linda Mom 81, LBD for longer than we know.... MAYBE 7 to 8 years......

Thu Jul 19, 2012 5:31 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new from Pompano Beach, Fl
Linda, welcome to the forum! Glad you've been reading some of the past posts so you probably know by now that Lewys are all different and the treatment is a cross between a crap shoot and Russian roulette.

I hope your mother is under the care of a neurologist who has experience with LBD--so many of them do not, it seems. And there are many who only seem to want to work with CVAs [strokes] and the like and want nothing to do with neurodegenerative diseases. We're all in this together and rooting for each other. God bless!

Maybe a forum tech can combine your duplicate posts so that your responses don't get scattered. :P

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.

Last edited by mockturtle on Thu Jul 19, 2012 9:58 pm, edited 1 time in total.

Thu Jul 19, 2012 6:45 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new from Pompano Beach, Fl
Welcome , I hope you don't mind I combined your 2 posts,
just makes it easier for others that want to welcome you!

Irene Selak

Thu Jul 19, 2012 7:50 pm
Profile WWW

Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: new from Pompano Beach, Fl

Welcome to the forums! We are glad you are here.

You may want to also post in a couple of discussion groups we have in our forum-check into [Behavior Issues there are some good discussions around practical tips others can share, as well as the first post ("Read First") that shares some really good articles for caregivers that you might find helpful. Also there is a Practical Caregiver's topic that you might find additional support.

I think you will find that this community will be very helpful in answering questions you may have and many of them are willing share their experiences. You are definitely not alone.

Check out some of the areas on the forum, and let me know if there is any additional support we can help you with.

Take care of yourself!


Kathleen B.
LBDA Forum - Welcome Moderator Volunteer

Thu Jul 19, 2012 8:21 pm

Joined: Thu Jul 19, 2012 3:37 pm
Posts: 8
Post Re: new from Pompano Beach, Fl
Thank you, both. I've been a lurker and have picked up many tips already. Thank you for fixing my accidental post. I have a new laptop and I'm not used to the sensitivity of the keys. I'm also not a specialist. Thank you again for your welcome.

Fri Jul 20, 2012 8:29 am
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