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 Video by an LBD caregiver 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 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.)


Thu Feb 17, 2011 10:07 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post 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.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 17, 2011 10:48 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post 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


Thu Feb 17, 2011 10:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 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. :cry:

_________________
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.


Thu Feb 17, 2011 11:03 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Video by an LBD caregiver
Thank you Robin, it really it home...................


Thu Feb 17, 2011 11:16 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post 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?


Thu Feb 17, 2011 11:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Video by an LBD caregiver
Gail -
I wonder if they'll even reply.
Robin


Fri Feb 18, 2011 2:01 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post 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.


Fri Feb 18, 2011 6:56 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post 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.


Fri Feb 18, 2011 8:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 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. :evil:

_________________
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 Feb 18, 2011 8:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 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


Fri Feb 18, 2011 9:20 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post 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?


Fri Feb 18, 2011 9:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Video by an LBD caregiver
Good idea. Maybe he would like to join the forum, too!

_________________
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 Feb 18, 2011 10:39 pm
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