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 My Courageous Father 
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post My Courageous Father
My name is Tracey, and I live in the Rocky Mountain area. I never heard of Lewy Body until early this year, when it was first mentioned in relation to my dad. Although I and other family members, friends, and colleagues had been seeing deficits in his functioning for a few years, dementia wasn't suspected because what we were seeing did not resemble Alzheimer's, and that's what we thought all dementias were.

My dad was good at hiding his deficits--the minor car scrapes, the missed appointments, the soiled underwear, the missing money. The habit he had of always saying "no!" to even the slightest change in plans or schedule was, well, "just Dad being Dad." But then I started getting calls from his patients and their attorneys claiming that he was falling asleep in sessions with them, that he was filing reports in the wrong cases, and that he wasn't making logical connections in his thinking. It was easy to blame his wife; after all, she was not really "family," not our mother, not "our kind." It was easy to pass it off on the stress seen because she did not work at a job and on the mounting anxieties that seemed to define our father more and more. That is, it was easy until he had a more substantial car wreck and couldn't cogently tell me what happened. That is, is was easy until he went into a fugue state for three hours and didn't know where he was (when in fact he had been sitting in his car outside his office for three hours straight).

It was at the hospital that the word "dementia" was first mentioned, and then in looking through his office, the house of cards came crashing down in a truth so painful that my sisters have split with me so as to protect their denial. My dad's wife found LBD in her research, and his symptoms seemed to match: the hallucinations, the anxiety, the trouble walking, the cognitive impairment--they were textbook, and that's what we helped my dad's doctor to see also.

i am going to stop here to be sure I am posting this right.

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Wed Sep 19, 2012 1:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Courageous Father
Yes, you are posting it right! Welcome to our forum! Hope you get as much support and information from it as we all have. LBD is a heartbreaking disease, also frustrating and unpredictable. I'm so, so sorry you have to be here but we need this forum and I am so grateful it is available.

_________________
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.


Wed Sep 19, 2012 2:19 pm
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post Re: My Courageous Father
Thank you, Mock Turtle. Now I will continue: I think my Dad is quite courageous. He faces his disease with humor when he can and tears when he cannot. On good days, he laughs and smiles a lot, and he writes about what is happening to him. On bad days, well, we just weather the storm together. Sometimes I can reason with him, most times not, but the Alzheimer.org classes I have been taking are most helpful in learning coping skills. My patience has been enhanced the more I learn. "Comfortable and Involved" have become my watch words, and "Compassionate Care" my motto. And I, like my father, am a work in progress. I wouldn't trade this time with him for anything, for my father is my hero and my walk with him is a sacred one.

I will strive to bring positive lightness to my posts. This isn't all bad. I listen a whole lot more closely now. I feel a whole lot more tender now. My husband, my dad's wife, and I work as a supportive, informed, and integrated team now. We act in my father's self-interest, rather than in ours, as a matter of commitment and care now. And he knows we love him, even when he can't quite remember why.

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Wed Sep 19, 2012 5:12 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: My Courageous Father
Tears in my eyes. Thanks for sharing. Hoping you find as much strength as you've shown in your post. You've given me hope for my children to see what a courageous person their father is in this also. Hugs.


Wed Sep 19, 2012 5:47 pm
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post Re: My Courageous Father
You, too. There is grace to be discovered in the surrender. Thich Nhat Hanh said, " Some people think the miracle was to walk on the water, but the real miracle is simply to walk upon the earth." peace.

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Wed Sep 19, 2012 6:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Courageous Father
Tracey, may God bless you for your caring attitude and involvement. What a wonderful daughter you are!

_________________
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.


Wed Sep 19, 2012 6:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Courageous Father
Tracey, has your father read Life in the Balance by Thomas Graboys? He is a cardiologist who contracted LBD and wrote a very insightful book about the progress of his disease and how he and his new wife coped with the challenges.

_________________
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.


Wed Sep 19, 2012 6:32 pm
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Joined: Tue Sep 18, 2012 10:14 pm
Posts: 6
Location: Colorado
Post Re: My Courageous Father
Thanks for the book idea. i will order it. I have been watching "Boss" on TV-Kelsey Grammar as the Mayor of Chicago, with LBD. Also read, Still Alice. Now reading [i]A Bittersweet Season[i peace.

_________________
Tracey, adult child of father, age 81, diagnosed with LBD in 2012. Father lives at home with his wife and is functioning in the 4.25 range on the Allen scale.


Wed Sep 19, 2012 6:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: My Courageous Father
Welcome Tracey, and I, too, am sorry for your need to be here. It sounds like you are approaching this journey in as productive and positive way you can. As the road gets tougher please be sure to take care of your own health, and your step mom will need to do the same. I'm guessing she is carrying the brunt of the caregiving and probably needs or will need some respite from the CGing duties. All the best to all of you during this very difficult journey. 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.


Wed Sep 19, 2012 10:15 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My Courageous Father
Tracy,

Welcome, I think when pieces start to fit together is really is an eye opener, sadly your siblings are not ready for that eye opener, I am hoping they will come around and be an asset in the care that your Dad will need as time goes on. In the meantime I hope you get much information and compassion from this forum!

_________________
Irene Selak


Fri Sep 21, 2012 12:07 pm
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