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 Dad in late stage LBD. Just found this forum 
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Joined: Mon Jan 17, 2011 7:18 pm
Posts: 2
Location: Tyler, Texas
Post Dad in late stage LBD. Just found this forum
I'm Sharon from Tyler, Texas. My Dad has recently been diagnosed with LBD but has had symptoms for years. The previous doctors were treating him for dementia with Aricept and for Parkinsons with carbodopa/levodopa. We recently convinced he and my mom to move here from the Dallas area and Dr. George Plotkin told us it was LBD.
He has gone from living with my mom in their own home last July to a nursing home last week completely dependent on total care from the staff there. It has been pretty devastating to watch. I think it's harder to watch my mom dealing with this than it is to watch my dad. I am still in shock, I think, at how fast the decline has been.
Dad is agitated ALOT. And since he is still physically strong, the nursing home staff have had to sedate him using different doses to try to find the perfect dose to calm him down without zonking him out.
Is it normal to feel numb?
sharon


Mon Jan 17, 2011 11:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad in late stage LBD. Just found this forum
Sharon,
I think the numbness is quite normal. I'm sorry to hear about the situation of both of your parents. It's a tough thing to be witness to. Is the focus of your efforts to support your mother? Sounds like your father is receiving decent care.
Robin


Mon Jan 17, 2011 11:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad in late stage LBD. Just found this forum
Welcome to the forum. Sorry you have to be here but glad you found us. Yes, numbness is pretty normal when faced with this kind of devastation. Having just placed my husband in a nursing home last month I can empathize. He is also now in the late stages, total care. It's heartbreaking to see and also heartbreaking to have to put him in the facility but I couldn't take care of him any more. Most of the time it takes two aides to transfer him using a mechanical lift. He still gets agitated but the medications help.

A little over a year ago, although he was very confused and none too mobile, I was taking him to the driving range every week to hit a few golf balls. Hard to believe he's declined this fast. God bless you and your family.

_________________
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.


Mon Jan 17, 2011 11:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dad in late stage LBD. Just found this forum
Dear Sharon,

WElcome to the LBDA foirums and so sorry for your family situation, yes this is the kind of illness that is a shock when the LBD"er declines to the degree your Dad has. None of us here can change the course of your Dad''s illness but we can support you and your Mom going through it, I am glad you are there for your Mom !

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Irene Selak


Tue Jan 18, 2011 8:20 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Dad in late stage LBD. Just found this forum
Sharon, Do read and post often, we all understand what you and your mom are going thru.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Jan 18, 2011 8:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Dad in late stage LBD. Just found this forum
Sharon - I want to give you a warm welcome too. My dad went downhill extremely fast, in fact his first big decline was literally over night. It is heartbreaking to see this. My mom had died 12 years earlier - I can't even imagine how she would have reacted to and been able to handle the steep declines my dad had.
You'll find tons of info. and lots and lots of support from people here who have "been there done that" or who "are here, doing that."
My dad's journey is over, and my greatest feeling is one of relief. Seeing him suffer as he did was devastating to everyone. I had been mourning the dad I knew for about 3 years, but especially his last 18 mo. where he went from independent living to being hospitalized, totally dependent, no ADLs. Take care and visit often. 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.


Tue Jan 18, 2011 2:19 pm
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Joined: Mon Jan 17, 2011 7:18 pm
Posts: 2
Location: Tyler, Texas
Post Re: Dad in late stage LBD. Just found this forum
thanks, everyone. When I sit down to think about my life's situation right now, I realize that the numbness is God's blessing right now. Our son is in his first year at Texas A&M in College Station (2 1/2 hours away), our daughter is graduating from nursing school this May and getting married soon after, and the situation with my parents all add up to a very emotional roller coaster. I'm not sure I could cope if I sat around crying all day.
One of my main concerns right now, about my dad, is that I don't think he gets enough water everyday. When I go to visit, I get a glass of water for him and he drinks at least 2 glasses, a few sips at a time, before he's satisfied. Since he can't hold the glass himself, he needs someone to do this for him. After drinking the water, he calms down alot. He even let me clip his fingernails yesterday. I'm really thinking he needs a sitter even at the nursing home. But being able to afford one is the problem. what's a reasonable per hour rate for a sitter for a few hours a day?

sharon


Thu Jan 20, 2011 12:36 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad in late stage LBD. Just found this forum
The hourly rate really depends on your area and the qualifications needed (eg, sitter vs. personal care aide vs. RN). In our area, it's $12 + for a sitter and $15+ for a personal care aide.


Thu Jan 20, 2011 12:38 am
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Joined: Sun Feb 06, 2011 10:56 pm
Posts: 6
Post Re: Dad in late stage LBD. Just found this forum
Sorry to hear about your dad. I recently learned that we could apply for hospice services for my mom and it's covered through medicare. They came out and did an evaluation to see if she meets their criteria (she does). Even though she's in a NF the hospice services will come out and visit with her for a total of 4-5 hours per week. So this way she can get one hour of one-on-one care and with the shortage of nursing home staff the extra help is much appreciated. Good Luck to you.


Mon Feb 07, 2011 4:23 pm
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