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Joined: Fri Jan 15, 2010 1:40 am
Posts: 3
Post New to this
[color=green][/color]Hello, I am new to the Forum, actually to any forum.
I found this site while looking on the internet again to find some information on LBD, because my dad has had it for 7 years, and is in a Care Center.. His anxiety has been so great for so very long, it is so hard to see him like that. He was and is my Hero. It is so sad.... All they put him on is that stupid Seroquel, sooo much of it, and i ask him for something else and this doctor refuses.. The care center tries hard to deal with the constant up and down at night from the anxiety, he can Never rest..... One on one he is a little bit better... I will stop now to see how this part goes, or if it will even post. Not to good at this yet.


Sun Jan 17, 2010 12:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post your dad
I know how it feels to have a dad with dementia. Mine was such a good dad, and now I am usually either sad, hurt or angry when I talk with him because he is so different from the dementia. His problems came on so suddenly. Then I feel guilty when I get mad at him - I know he can't help it but it was so recent that he was his normal self. And, I just hate having to deal with his house and all his financial stuff as well as managing his care, all from far away.
If I can be of support, let me know. I don't think the depression or anxiety meds my dad is on help him at all. I don't know if there is any help in this hopeless situation...... LTCVT


Sun Jan 17, 2010 4:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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bestdadever,
Who has healthcare POA for your father? That person needs to have a meeting with the care facility to gain control over the treatment. A suggested treatment regimen for LBD can be found in Dr. Brad Boeve's 2004 "Continuum" paper. You'll find it on lbda.org.
Robin


Sun Jan 17, 2010 5:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post POA
My sister and I both have Power of Atty. He is on a lot of meds, some prescribed by his new physicians - a psychiatrist and a neurologist. My sister has a list of what they added to his meds. I will look at the resource you suggested. I am 500 miles away and it is difficult to communicate with these new drs. I am taking him to the neurologist, but not till May because that's when the dr. is available again.
Thanks for response.


Sun Jan 17, 2010 6:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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My post was addressed to bestdadever.


Sun Jan 17, 2010 7:09 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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bestdadever,

Please delete your new topic "To Robin," and copy the text here by hitting REPLY. If you create a new topic for every reply you have, we'll have thousands of topics and no way to keep track of your story!

I ask that you NOT send me a private message or email unless you want my help in making arrangements for brain donation. Anyone who sends me a private message or email is encouraged by me to publicly on the Forum. If you need to speak with someone privately, please call the LBDA Helpline at 1-800-LEWY-SOS, call the Alzheimer's Association helpline (which is run by your local chapter), or contact the leader of a local LBD support group, if you have one near you.

Thanks,
Robin


Sun Jan 17, 2010 7:43 pm
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Joined: Fri Jan 15, 2010 1:40 am
Posts: 3
Post hope i did it right this time
Robin, I keep getting notification in my mailbox, and i am new at this, i tried to delete my first message i put on there, which i think it did. Did It? I hope so, i am not fast at this because i do not know what i am doing. I guess i didn't want to scare any new users with things that have happened to my dad was my reason. Right now my Dad takes 400mgs of Seroquel a Night! Has been for approx. a year, at one time they had a PRN 3 times a day for 25 mg. Now because i gripe and have the Director of Nursing and the Director of Social Services involved too.. Dad has another appointment with this Dr. Holm, sposed to be the best in the business, on Tuesday.. He does not listen well, but this time, i think i will speak up louder. My Dad is so happy to see this guy, the Doctor says, "your the mystery man" He really likes dad, he says it, and has had Dad in to the 3 week analyzing hospital atleast 3 times. He actually saved Dads life from another hospital that put him on ativan and resperidol which i said in the initial message, but it put him into that dellerium Dr. Holm said, the other hospital said he was dying, and when he got to the hospital where his doctor now is, he only had a urine infection and malnutrition! Unreal! That was quite a while back.though, so this doctor has been with him about 4 years, and the Seroquel is a mainstay it seems, so finally the director of the nurseing home called Dads doctor and Dads doctor admitted Dad is on to much medicine, i really don't even want to go back to him, what does he think dad is?? Right now i am hot just thinking about it. He also is on three anti depressants, one they are taking him off of real slow been two weeks., Effexor of course, another agitating medicine. I know about these medicines, but if your not a doctor they don't listen.... The nursing home is trying to get me to give rights of the primary NP, and the doctor who comes once a month to take care of Dad, and i say no, they don't know what they are doing either.! They are Geriatric NP and Doctor, but no specialties, and i don't really like the NP, she walks away as your talking to her... This nursing home is a very good one, they have high ratings, and have been working with me for about a month to get Dad off this medication, so now tomorrow the Director of Nursing is supposed to call me with hopefully a message from the Director over the Nursing Home, which is a doctor for another hospital, but does just the director for this nursing home.... It is really a mess and Dad is the one to suffer from these idiot doctors! I will read what you said to read, but i guess i have never heard of a laymen telling nurses what and what not to give to my Dad.. They don't like to see me coming i know that, but they say you will have to talk to the doctor. We recently had a care conference, everything was discussed, but because the doctor that Dad has put up a stink because another doctor butted into his business it sounds like, and he wouldn't write any order, and then this last week he finally called back, why i don't know what he is thinking because he doesn't return my calls.! But Linda the nurse that is usually there said he said, take him down to 200mgs at night, and 25 in the morning and at lunch, and then PRN 25mgs during the day, that is even more than the 400mgs. just spread out.... Can you imagine the situation for so many people who don't have advocates.. I like alot of those people up there, and a few no body even comes to see. Sorry, i went off about all this, but my Dads story is even longer than this, this is just recent.... The Seroquel is causing the symptoms it is supposed to take away!!! Even the Director of Nursing says it.... I will surely talk to this doctor on Tuesday when we see him, or tell him we are done, one or the other.! I sure hope i don't have to erase this and put it some where else, because i really don't know how to do it successfully, i have to read more instructions too, i just started last night.. But anyway that is where my Dads situation is now...


Sun Jan 17, 2010 8:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
bestdadever,

I doubt you will scare many away! Others can benefit from reading your story.

Seroquel doesn't work for everyone.

Please go to:
http://community.lbda.org/forum/viewtopic.php?t=2022
Within YOUR post, find the X button. Click that. Select YES. That will delete your post.

Good luck,
Robin


Sun Jan 17, 2010 8:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Good job on deleting your post! This seems to be something not everyone is able to figure out how to do. You are not such a newbie after all!


Sun Jan 17, 2010 10:36 pm
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