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 Hi I'm new 
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Joined: Sat Oct 11, 2008 2:52 pm
Posts: 6
Post Hi I'm new
Hi my name is Kate andlike so many other people here I've been lurking around on the forum for a while now. You do not know how much of a help and comfort it has been to me.
I'm 34 years old and I am my Mum's primary carer.I left work in April of this year and have been looking after Mum at home since then.She has been diagnosed with Dementia but I am convinced from what I have read here that she has LBD. Her doc said there's a strong possibility but is waiting to do more tests. I was looking at the stages that are posted up elsewhere on the forum and she is definitely between 5 and 6. Most of today I have been at least 3 different people and it breaks my heart that she doesn't recognise me. That for me is the hardest part.
My Dad passed away 5 years ago and I'm an only child, there are no relations near me only my cousin who lives 2 hours away, he has been fantastic as has my next door neighbour, she rescued me one day when Mum had me pinned in a corner and was threatening to call the guards. She is a lot bigger than me in height and weight and is quite strong so I really had no chance but my neighbour was able to calm her and convince her that I meant her no harm.
I am SO blessed that she generally sleeps through the night. She normally wakes around 5am but 9 times out of 10 I can get her to go back to bed again. She generally wakes because she has 3 ulcers on her leg and the pain from these wakes her.
Right better head to bed, it's after 1am here. Just wanted to pop on and day "Hello" :D


Sat Oct 11, 2008 8:17 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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Welcome to this forum.

I hope you'll read Boeve's "Continuum" paper on proper treatment for someone with LBD. The advantage of having a diagnosis is that treatment leads from that.

Good luck.


Sat Oct 11, 2008 9:56 pm
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Kate,
Welcome to the LBDA forums, glad you are getting some solid information here and trust me everyone here understands what it is like to care for someone with LBD, Feel free to post in all areas as questions come up for you.


Sat Oct 11, 2008 11:21 pm

Joined: Sat Oct 11, 2008 2:52 pm
Posts: 6
Post 
Thank you fr the welcomes. I have googled that paper that you advised about Robin but can't find it do you have a link?? Thanks :wink:


Sun Oct 12, 2008 3:53 am
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http://www.lewybodydementia.org/Boevelink.php


Sun Oct 12, 2008 9:00 am

Joined: Sat Oct 11, 2008 2:52 pm
Posts: 6
Post 
Thanks so much for the welcomes. Today was not a good day. I had to call the doc and he came up, it's the first time she has spoken properly to him. She told him all about me who's pretending to be her daughter, who is lying to her etc and asked him when she can go home to her family. It's the first time he has seen her like this and when I said to him that I was convinced that it was LBD and told him all about this forum etc he finally said I am sure it is LBD. She has all the symptoms. ATM she has gone from sometimes not knowing me to "never" knowing me. She doesn't even know me for 5 mins anymore and even though I find that really hard what kills me is that she thinks I'm lying to her and she's so distressed. Has anyone else had this problem.
Oh and I've tried going out of the room and coming back in. It didn't work. Thanks for the advice though, I really appreciate it!!


Tue Oct 14, 2008 6:22 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post capgras
Kate, My husband doesn't always know who I am. He think there are 3 Gerry's, one of them is his wife and he frequently is depressed and upset with her because she always takes off. He has the other 2 Gerry's that take turns helping him and taking him to his appointments. Fortunately he likes all 3, but it upsets me to see him so down and looking out the windows or going down the street to see if he can find her. I've tried to explain but he's NEVER going to get it. I think with us, it's capgras. Don't beat yourself up, this disease has a mind of it's own and there's nothing we can do but to be understanding and just keep plugging along. Take care of yourself. Gerry


Tue Oct 14, 2008 8:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Kate,

This is called Capgras syndrome. It's a delusional disorder.

You might give the Boeve "Continuum" paper to the MD since he agrees your mother has LBD.

Good luck,
Robin


Thu Oct 16, 2008 5:04 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Post 
Kate,

Welcome. You have great courage to be trying to care for your mother at home, but my heart bleeds seeing how young you are to have given up your work and taken on this load. I do hope you have sources of support and arrangements for respite care.

As many of us already have learned, the atypical anti-psychotic drugs can be a blessing in dealing with the LBD delusions and hallucinations. The psychosis doesn't disappear, but it does become more manageable, and sometimes a very low dose is all that's needed. If your mother is acting out in a way that presents a danger to your or to herself (as it sounds), please talk with her doctor about this option.


Fri Oct 17, 2008 12:28 pm
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