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 My dad with LBDA. 
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Joined: Tue Apr 05, 2011 11:15 am
Posts: 2
Post My dad with LBDA.
Hi everyone. My name is Tobias and I'm from Germany. As there is no decent german web site dealing with LBD, I searched the web and I found this. First of all I'd like to thank everyone for sharing and giving suppport. Even just reading a bit helped me.

In 2006 I went to Vienna with my father, whom I hadn't seen in quite a while as he used to be very busy and I lived and still am living three hours away. He had always seemed a bit confused, used to forget things, even birthdays, so I guess that's why in the beginning people wouldn't really notice. But seeing him for the first time in a couple of months I got scared of what I saw. Words kind of fail me here, hard enough to express this in German but I'll try. My dad seemed even more confused and in spite of him really being smart and eloquent, he would just not make any sense at times. He would say things that just didn't make any sense and then forget what he had just said a few seconds ago. Some of his friends noticed it as well and we all though he must have suffered a stroke or something like that.
At first, he was diagnosed with Parkinson's disease which accounted for a lot of symptoms but not all of them. And then it took his doctors some time to figure out what it was. And there it was, that disease I had never heard of: Lewy-Körperchen-Demenz. Körperchen meaning "body". And before too long we should all learn what it meant:
My dad literally believes that the army is going to pay him a ton of money to go to Afghanistan. He saw a couple of adolescents by the dining table holding knives, threatening him. He saw tanks rolling throug the small street he lives on. When I visited him with my twin sons he would talk to them, ask them the "normal" kind of questions that grandfathers ask their grandchildren. Except, he was also talking to a chair next to him, believing he had three grandsons.
The decline went extremely fast (though I learned here, that's just the way it goes with LBD) and my dad is now dependent on full time care. He can barely eat and hold a glass. That's about it.
Next week, my brother and I are going to talk to his girlfriend to convince her that she cannot do all the caretaking by herself. Luckily, our health care system offers a variety of possibilities. But dad will probably end up in a nursing home. And that's a good thing for all of us I believe.
In another article here I read about feeling numb. Now, that's the weirdest part. I feel like my dad's gone and I missed the chance to say good bye. Writing this makes me cry. I haven't been able to cry over this. So, I guess that's a good thing.
Thanks everyone. And all the best to all of you!
Tobias


Wed Apr 06, 2011 6:25 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: My dad with LBDA.
Dear Tobias:

Welcome! Your description of your father's delusions is very familiar. My late husband often believed he was a football coach and he was late for his plane or there were basketball players in our house. He was also diagnosed originally with Parkinson's.

I'm so sorry to know of your father's decline. My husband's disease progressed extremely fast between November, 2010 and his death recently. I wish you the best for your father.

We lived in Gross Gerau 83-93 - (between Darmstadt and Mainz) when we were contractors at the Darmstadt Army base. I still have friends in that area.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Apr 06, 2011 7:12 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My dad with LBDA.
Welcome Tobias. Isn't it wonderful how the Internet shrinks the globe? Resources are different from place to place, but the disease is consistently horrible everywhere.

It is normal to be in mourning. You have suffered and will suffer very sad losses. You can still be there for your dad, helping to ensure that he has appropriate care and love.

Jeanne

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


Wed Apr 06, 2011 9:01 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: My dad with LBDA.
Tobias,

Welcome to the forum. You will find a lot of help and support here. I am so sorry to hear about your father's decline. You are right, it is quite a shock and can leave a person feeling numb. And my sister and I talk about how we have already lost our mother, who will be 87 this weekend and has been living in a nursing home since her diagnosis a little over a year ago. She, too, is a very intelligent lady and it is hard to watch the changes in her. But I hope that, like my mother, your father still has some lucid moments when you can still see who he was.

Best of luck to you in your search for what's best for him.

Julianne


Wed Apr 06, 2011 9:10 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My dad with LBDA.
Tobias, I was greatly moved by your introduction and description of your experience with your father. I know exactly what you mean when you say you didn't get a chance to tell your father 'goodbye', as that's the way I feel about my husband, even though I have been with him all along. It's especially sad to lose our loved ones when their likeness is still with us. My husband was a PhD research scientist with a brilliant mind and facile wit. He is still the love of my life and my raison d'etre but I miss him terribly.

Welcome to the forum. I am sorry you have to be here but so glad you found us! God bless.

_________________
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 Apr 06, 2011 9:59 am
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Joined: Tue Apr 05, 2011 11:15 am
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Post Re: My dad with LBDA.
I don't know what to say. Thank you all so much for caring!


Wed Apr 06, 2011 10:09 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: My dad with LBDA.
Welcome to the place where everyone knows your pain. We are all very personally aware of what you are seeing and having to do. We are there, also.

There is a wealth of information here. You will learn so much. Take good care of yourself, too, as this disease has a way of taking a toll on family members.

Best wishes to you and your family. Nan


Wed Apr 06, 2011 10:31 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My dad with LBDA.
Tobias,
Welcome to the LBDA forums and I am glad through the internet you could find a place to learn , share and feel! So much of what you have written about your Dad is/was true for many of us in our own situation, I welcome you to join in here !

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Irene Selak


Wed Apr 06, 2011 12:40 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: My dad with LBDA.
Welcome, Tobias. Here you will find understanding and a certain amount of consolation, as you will see that you are not the only one in this situation. We have all been there, and are all travelling a difficult road. I know exactly what you mean when you say you never got to say goodbye to your Dad. I feel the same way. But you may be lucky, and he will have lucid moments, that you will learn to treasure, as I have done. I have often said my Dad passed away 5 years ago, and it is only his shell that remains, but there are times when I get a glimpse of the man he used to be, and these times, even though they are less and less, I hold on to tightly and they get me through the difficult times. God Bless you and your family. Visit here often, it is a temendous help,
Ger x

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Apr 06, 2011 12:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My dad with LBDA.
Tobias,
Thought this would be of interest to you as it was just posted here recently by one of our forum members:

viewtopic.php?f=4&t=2872

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Irene Selak


Wed Apr 06, 2011 12:44 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: My dad with LBDA.
Tobias, As everyone has said, this is the place to visit often. We all understand and can offer suggestions and say what has or has not worked for our LO. Take care of yourself and please share, sometimes in the "off topic" we even get some laughs.

Gerry

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


Wed Apr 06, 2011 1:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3331
Location: Vermont
Post Re: My dad with LBDA.
Welcome Tobias - this forum has become like family to me. Like your dad, mine suffered a huge decline about 2 years ago, and overnight became totally dependent on others. He spent his last 1 1/2 years in a wonderful ALF (assisted living facility). I too, felt like my dad had died before he actually did. His personality changed so much from the disease that he often wasn't recognizable, and he lost 135 lb. by the end, so physically he was barely recognizable. He was unable to do anything for himself at least his last 6 months. Watching him suffer was the worst part - it is so hard on everyone. We are a supportive community of people who are either in the midst of caregiving or our journey is over. Please come here often for whatever we can help you with. 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 Apr 06, 2011 2:03 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: My dad with LBDA.
Tobias:

How is it that your English is so perfect? Not what you get from lessons. I've only visited Germany twice, but loved it.

I read your post about not feeling you had said goodbye to your real father while I was bawling about my insufficiency of attention to my husband when I could have done better. C'est la vie--a normal reaction for us all, I think.

Gail


Thu Apr 07, 2011 12:04 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My dad with LBDA.
Tobias,

Sorry you've had to join us here. Is there a Lewy Body Dementia-related organization in Germany? There's the Lewy Body Society in the UK but I'm not aware of others (since I speak no European language).

About feeling numb...I think it is hard to care for a parent when the loving parent we knew is mostly gone. The tables get reversed: we are caring for our parents as if they were children but, in this case, there's no real hope of improvement. You might consider getting grief counseling though your father is not deceased.

It's very sweet that your siblings are trying to take care of your father and your father's girlfriend. Your father must be very proud.

Tobias


Sat Apr 16, 2011 5:22 pm
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