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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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 Video by an LBD caregiver This is a beautiful 7-minute video (produced in February 2010) by a man who cares for his mother with LBD. He says it's the hardest thing he's ever done. He says it's easier to die than to watch someone die from this. The man has no family assistance in caregiving. The YouTube page notes that the film was entered in the 2010 Neuro Film Festival. http://www.youtube.com/watch?v=43XWaIlx3Zc (I wished I could turn the speaker's voice volume up more.)
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| Thu Feb 17, 2011 10:07 pm |
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JeanneG
Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1037
Location: Minnesota
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Re: Video by an LBD caregiver Oh my. That is very moving and very powerful. I don't think I could take too many of those in one week, though. Kind of overwhelming.
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Jeanne, 66 caring for husband Coy, 85. RBD for 30+ years; LDB since 2003, Coy still at home, in early stage
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| Thu Feb 17, 2011 10:48 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Video by an LBD caregiver Thank you, Robin, for sharing that. It is so very familiar and yet so sad.
I found it interesting that she 'entertains herself' with a roll of paper towels and a spoon. Dale wads up his sheet and blanket. He is constantly delusional now. He wants to leave here all the time. I'm just grateful that he is calm and cooperative.
Again, thank you....
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Thu Feb 17, 2011 10:58 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
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Re: Video by an LBD caregiver It is beautiful, Robin. Watching her little feet trying to move reminded me so much of my husband and hearing her son's description of the caregiver's life was so evocative. What he said about doctors and medicines really resonated with me, too. So many questions and bloody few answers. 
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Thu Feb 17, 2011 11:03 pm |
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BernieD
Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
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Re: Video by an LBD caregiver Thank you Robin, it really it home...................
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| Thu Feb 17, 2011 11:16 pm |
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gailshef
Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
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Re: Video by an LBD caregiver Very powerful. I sent the link, without comment, to my husband's brother and sister who have not stepped up to the plate in spite of my begging. Will their responses be defensive?
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| Thu Feb 17, 2011 11:33 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Re: Video by an LBD caregiver Gail -
I wonder if they'll even reply.
Robin
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| Fri Feb 18, 2011 2:01 am |
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Gerry
Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Re: Video by an LBD caregiver Thank you Robin, I saw Frank with the paper towels, so sad but what a wonderful son. It does make me refocus on the struggles Frank has and not the frustration that I have.
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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.
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| Fri Feb 18, 2011 6:56 am |
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gailshef
Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
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Re: Video by an LBD caregiver Amazing. I sent the video, without comment, to my husband's brother and sister. The sister emailed back "Heartwrenching," then went on to another subject.
The brother said he had forwarded it to some of my husband's friends so they would see how it really was.
They didn't get the message about being a sole caregiver.
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| Fri Feb 18, 2011 8:28 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
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Re: Video by an LBD caregiver Gail, I'm sure they got the message. We've faced the same kind of denial. The kind that gets you off the hook. 
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Fri Feb 18, 2011 8:38 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Re: Video by an LBD caregiver Gail,
Perhaps you can follow up and say "yes, it's heartwrenching to have this disorder and heartwrenching to be the sole family caregiver for someone with this disorder."
Robin
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| Fri Feb 18, 2011 9:20 pm |
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gailshef
Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
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Re: Video by an LBD caregiver What if we sent sort of a group email to that guy telling him how much his video resonated with us?
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| Fri Feb 18, 2011 9:39 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3018
Location: WA
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Re: Video by an LBD caregiver Good idea. Maybe he would like to join the forum, too!
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Fri Feb 18, 2011 10:39 pm |
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