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 Yet another family affected by LBD 
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Joined: Fri Dec 11, 2009 12:52 pm
Posts: 2
Location: NorCal
Post Yet another family affected by LBD
My dad is 73 and has seen doc after doc, one of whom has diagnosed him with LBD. We didn't buy into this but, the more time that passes, the harder it becomes to ignore the diagnosis. He's been on a slow cognitive decline for a few years and, in November of '08, he suddenly started not recognizing my mom...I guess this is called Capgras Syndrome. Many, many frustrating days and nights since and we've run out of ways to deal with him. He becomes agitated when he thinks my mom is someone else and last night, I received a call at 12:30 AM from her saying that he thought that she was an intruder. She was pretty freaked out because, in attempt to protect his house, he came after her, trying to punch her in the face -- he wanted her out of the house and refused to calm down while she was there. I got over there and, after a while, I was able to talk him into taking a sedative, but it was pretty weird up until then. So that's a bit about me and my situation. Any words of wisdom would be great, we're extremely frustrated and completely out of ideas. He's on 5mg of Aricept, not sure if that helps but he doesn't do well with 10.


Sun Dec 27, 2009 8:39 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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DLew,

Sorry to hear about your father's diagnosis.

Which MD did the diagnosing? And do you recommend him/her?

Be sure to find Dr. Boeve's Continuum paper from 2004 on lbda.org. This gives a suggested treatment regimen for someone with LBD. Have you spoken with the MD about trying the Exelon patch rather than Aricept? Or trying Namenda?

You may have to consider placing your father in a care facility for your mother's safety. Her safety is paramount. There are many decent care facilities in the SF Bay Area and Sacto.

Please email me privately if you are interested in joining our Northern California LBD support group.

Good luck,
Robin


Sun Dec 27, 2009 10:03 pm
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Joined: Fri Dec 11, 2009 12:52 pm
Posts: 2
Location: NorCal
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He was diagnosed by Michael Greicius at the Stanford Memory Clinic, who seems to be pretty reputable but also seems to look at his patients as being somewhat mechanical creatures. And, while I'm sure he's brilliant, it feels like he failed to hear anything that my mom and I were saying when we'd ask questions about things such as dosage amounts and behavioral issues.

And yes, we're thinking about the care facility option but my parents were hit pretty hard by the economic downturn, we want to leave my mom with their house and savings so there's quite a bit to figure out. We've worked with a few lawyers to get things in order, now it's just a matter of knowing when to start the wheels moving.

I'll forward your info over to my mom, she's the one who really needs the support. She's an island right now -- she's pretty focused on keeping him home as long as possible but this latest thing scared her quite a bit. Thanks.


Mon Dec 28, 2009 2:00 pm
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Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
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DLew, I am wondering if there is any medication that could keep your father calm. I give my husband his medication at night, and he does not question what I give him. I can give him his seroquel a little early if he is aggitated, therefore keeping him calm and peaceful most nights.
Lorraine


Mon Dec 28, 2009 2:32 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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I think very highly of Dr. Greicius as a diagnostician. He was the neurologist for someone else in the local support group, and she had similar things to say about bedside manner. Someone just emailed me last night to join our support group; her husband sees Greicius. The most positive thing she had to say about him was that he's responsive to email. (That's certainly worth a lot.)

I'd stick to Boeve for dosage questions and behavioral issues.

Sorry, but I think you need to place your father right away in a care facility, even while you are figuring out the long-term. Your mother is not safe in the same house as your father.

We have many adult children and parents who come together to our support group meetings. I don't seat them next to each other because I want them to be able to speak freely. And we have many adult children and parents who are on the email list. You are all in this together, as you've realized.

Robin


Mon Dec 28, 2009 2:34 pm
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