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 Does anyone still go to the chat room? 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Does anyone still go to the chat room?
Lynn and others,
Does anyone still use the LBDA Chat Room? Someone called me today and is in need of lots of support. The "chat room" seems perfect for her as she doesn't want to post private details about her husband on a public forum for all to see. But she does want to check in multiple times a day with others going through the same thing.
Robin


Chat Room info is here:
http://www.lbda.org/index.cfm?fuseactio ... page_id=55


Fri Dec 17, 2010 9:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Does anyone still go to the chat room?
She could PM someone on the forum. I would be happy to answer discuss things with her by PM or e-mail. I used to go to the chat room but no one was there, usually, and if they were I would be interrupted by by husband's needs and had to cut out, anyway.

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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.


Fri Dec 17, 2010 10:08 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does anyone still go to the chat room?
Her husband is a fairly well-known person in their city. She is concerned that sending emails or PMs to people gives written information that could possibly be used to "out" the husband.

The chat is NOT recorded so there's no way for anyone to obtain a record of it.


Fri Dec 17, 2010 10:11 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Does anyone still go to the chat room?
Robin, Anytime I tried the chat room, no one was on, so I gave up. Bernie


Fri Dec 17, 2010 10:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Does anyone still go to the chat room?
Is this person east coast or west coast? Or in between?

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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.


Fri Dec 17, 2010 10:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Does anyone still go to the chat room?
I used to have the chat open just about all day every day. But I found that I was spending so much time there (when I could actually find anyone there!) I had to stop because I wasn't getting anything else done.
I'd be happy to have her send me PMs or emails too. Of course I would never share hers or anyone else's info. with anyone else. Or, if she wanted, I could talk with her by phone.
There is also the LBD helpline - has she tried that? If there's something I can do, let me know please. Lynn

_________________
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.


Fri Dec 17, 2010 10:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Does anyone still go to the chat room?
Also on the LBDA Helpline no names need to be used !

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Irene Selak


Fri Dec 17, 2010 10:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does anyone still go to the chat room?
I'll suggest the phone. She wants to "check in" several times a day so I thought the chat room would be perfect for that.

Personally, I don't think the Forum is the right place to "chat." Private email exchanges seem the most appropriate but, again, she's reluctant to have her email address exposed.


Sat Dec 18, 2010 1:07 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Does anyone still go to the chat room?
Robin - maybe you can suggest, if you haven't already done so, that she get another email address to use just for this purpose. She can make up any old name for the email address and doesn't have to say where she's from anywhere publicly. The chat room, theoretically, is perfect for that, however, there is rarely anyone there during the day, most people I've found on there in the past get on after 6 pm EST and until about 11 pm EST it can be kind of busy. But if you really want to talk with someone during the day, it can be extremely frustrating. I've suggested having rotating volunteers be there for certain times during the day, but everyone is just so busy. It's really hard to get people to squeeze in anything else in their already busy day, especially those doing 24/7 caregiving. There just aren't enough hours in the day.
Lynn

_________________
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.


Sat Dec 18, 2010 1:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does anyone still go to the chat room?
Thanks to everyone for the good ideas.

I like the idea of a new email address specifically for this purpose. What about the LBDA Face Book page? Is it very active throughout the day?


Sat Dec 18, 2010 5:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Does anyone still go to the chat room?
Good question. I almost never go there, not a big FB fan in general. Takes up too much time, and I don't really need to know that someone is making grilled cheese for lunch or they just drove Aunt Jane to the post office. Sorry, I'm feeling very cynical tonight! Lynn

_________________
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.


Sat Dec 18, 2010 6:32 pm
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