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 Really harrowing afternoon 
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Joined: Wed May 08, 2013 9:16 pm
Posts: 15
Post Really harrowing afternoon
Mum (86 and living with us) was diagnosed with LBD in February, although I knew there was a problem long before that. This afternoon she became unresponsive for a short time and then started pleading with me to help her die. For 2 hours I sat holding her while she told me she had had enough, didn't want to live through another night, and pleaded with God to take her. Although this is not the first time this has happened, it was by far the longest and worst.
Then, without preamble, she climbed out of bed and told me it was time for tea - and I had promised her toffee banana balls from the Chinese takeaway!!
Now she is writing more notes and chatting away to herself, asking for my help with the date - as if nothing has happened.
Has anyone else had experiences like this - I'm emotionally worn out - please help!.


Sat May 11, 2013 12:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Really harrowing afternoon
Yes, that's why LBD is referred to as the 'roller coaster'. 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.


Sat May 11, 2013 2:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Really harrowing afternoon
Everything you mention is all LBD sadly!

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Irene Selak


Sun May 12, 2013 2:07 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Really harrowing afternoon
Yes, exactly the way my dear husband started out. Every night about 2AM the acting out started with each night worse than the last. At least until he was put on Aricept and Namenda and they started working. A little Seroquel at night also helped for sleeping. One thing I have found out, when it seemed the Seroquel was not working, he actually did better with a smaller dose. Originally he started out with 50mg daily but now only uses 12.5mg at night. He is doing well on that but like everyone else says, its like a roller coaster ride. A very bad roller coaster ride. The biggest obstacle to this whole thing is being able to keep myself calm.
Mary


Thu May 23, 2013 10:49 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Really harrowing afternoon
pmhodel,

Would you say it took a few days for the seroquel to work at all?

Thanks so much!

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 26, 2013 12:45 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Really harrowing afternoon
Yes, I would say it took a couple days for the Seroquel to work but like all other medications with LBD it takes time to see what dose and time of day are best to give it. If I remember correctly, when he was having an acute attack of agitation the Seroquel would take hold in about 20 min, It seems like my LO does better just to give it to him routinely. He started out 25mg morning and 25mg night. Then the pharmacy switched him to 50mg extended release. He had that every night. This worked for a couple of years but then it seemed to backfire a bit and with the doctors advice the Seroquel was discontinued. Again we had a long spell of not needing it but gradually it became obvious he needed it again. This time his doctor said to only give him 1/2 of the 25mg tab. We again tried that on a PRN basis but soon could see he needed it on a regular basis. So now he gets 1/2 25mg ever night at bedtime. He has been doing this now for 6 months and its working. At least until next time. I don't think there is any medication that will make him "normal" but sure makes life more livable. That and routine, routine, routine.
Mary


Sun May 26, 2013 9:24 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3310
Location: Vermont
Post Re: Really harrowing afternoon
"more liveable" is good, Mary. That's about as much as we dare hope for much of the time with this awful disease. I hope you have a peaceful day. 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.


Sun May 26, 2013 10:22 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Really harrowing afternoon
Thanks Everyone....I think doc ordered 25 mg day and 25 mg night but hospice nurse has it confused..I called doc directly for info...I think they did use haldol last night...not sure what I will find today...my husband is sick too....and my brother who arrived thursday to help is sick with sinus infection....Can only count on help from above....THanks to you for all of your support here.....

Best,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Sun May 26, 2013 11:31 am
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