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 Glad to have found LBD forum and here's our story- My Dad 
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Joined: Sun Apr 25, 2010 8:24 pm
Posts: 5
Location: Michigan and Indiana
Post Glad to have found LBD forum and here's our story- My Dad
My dad is 86 and we started noticing problems in Sept 2008. Looking back, we probably saw them earlier. In Nov 2008, he moved in with my sister and brother in law. That went okay until he really started hallucinating and then he moved into assisted living in April 2009. That was a awful day. He was so upset. He did okay there until Sept 2009 when his hallucinations and behaviors took a turn for the worse and he was hospitalized. At that time, he became totally wheelchair bound and incontinent. He moved from the hospital into a skilled care facilty. We found a beautiful place, but it still isn't home.

He was orginally diagnosed with Alzheimers, and then Parkinsonisms with maybe LBD and/or Alzheimers. One doctor bascially told us he has dementia, it does not really matter what kind it is. The more we are around dad and the more we read, the more my sister and I believe he has LBD. He is on aircept, namenda, seroquel and carbo-levodopa. He was also taking Prozac- but we are taking him off that- slowly of course. He was doing okay, but recently took a turn for the worse and seems to be sleeping more and more and less and less interactive. More hallucinations- someone is stealing the horses, there is a bear in the room, etc. This coincided with an increase of the Namenda dose, but Dr thinks it is unrelated.

The most interesting thing about my dad's illness, is that he thinks he is dead and has been since Sept 2009. That was an interesting call... "Your dad woke up dead today." He describes how he has been cremated, where he is buried, what his tombstone says. His story is always consistent.

My mom passed away three years ago and my sisters and I are taking good care of our dad as she asked us to and of course we want to do that as well. Our dad is a great guy and we hate to see him like this, but there is a lot of comfort in being able to be there for him as he takes this journey.

He still knows who we are and seems to take great comfort in our visits.

There is a lot of good information in this forum and I look forward to participating. Robin has already been a huge help to me with some questions on advanced planning for brain autopsy. Special thanks to her here.


Wed Apr 28, 2010 7:14 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Welcome!

Happy to help any family accomplish brain donation. It's of critical importance to us all.


Wed Apr 28, 2010 7:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
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Hi Kay - glad you are here. There are lots of wonderful people on the forum and the chat and tons of helpful info. My 88 yr old dad has so many possible diagnoses, with nothing definitive. So I am just trying to accept the fact that he has dementia and who knows what else, and try to deal as effectively as I can with all the downward shifts and changes. I know he will never get better and I just try to do whatever I can to make him comfortable with the time he has left with this awful set of diseases. Anyway, there's a lot of comfort in being able to discuss this stuff with others who are going through similar situations. Welcome, Lynn


Wed Apr 28, 2010 7:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Welcome to the forum. It's a very informative and supportive place. Sorry you had to join us in Lewy Land but there is strength in numbers! --Pat


Wed Apr 28, 2010 8:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Kay,
Welcome to the LBDA forums, sorry for your need but am glad you found us. You will find many stories that are very similar to yours and your Dad's journey. Vist often and I am glad Robin has been helpful with the questions you have had with Brain Donation, she is the go to person for that!

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Irene Selak


Thu Apr 29, 2010 11:07 am
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
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Hi Kay, Sorry you have to join us here but welcome. I experienced something with my mom a month ago that was similar to your dad's account of being dead. She woke up one morning and at first, it was her mom who had died, but by the time I got her up and dressed, it was she who had died. It only lasted one day, thankfully, but she told my husband, my brother who called her, and the hospice chaplain who visited that day about her death and her funeral plans in specific detail. Does your dad still think he's dead? I'm glad you found this forum as it's such a great place for information and support. And yes, Robin is so helpful with making the brain donation. We should all be thankful for her efforts in helping us. May God bless you as you tend to your dad, Kitkat


Fri Apr 30, 2010 2:52 am
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Joined: Sun Apr 25, 2010 8:24 pm
Posts: 5
Location: Michigan and Indiana
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Kitkat, Yes my dad still thinks he is dead. He has never forgotten it since it started in Aug 09. He doesn't bring it up everyday, but he does a lot. And if you asked him, he tells you. The amazing thing is that all the details are consistently the same and a lot of details- and interestingly different than the funeral arrangements he has preplanned. One day I asked him how he was doing and he told me "I am dead you know." and I said well besides being dead, are you doing okay? He laughed a long time at that. Silly daughter. Another time he was in the emergency room (an infection) and he would look at us and just laugh and laugh. We asked him what was so funny, and his answer was "You two, taking a dead man to the hospital." When it first started we asked him how he could talk to us if we were alive and he was dead. He said he knew that was odd and he hasn't figured that out yet, but he was dead, he was sure of that. The brain is such an amazing thing.

You are the first person we have found that has had a similar experience if only briefly. That is reasuring to us.

And everyone else, thanks for all the kind comments.


Fri Apr 30, 2010 5:32 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
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Kay, Wow, his delusion is so strong. I had to smile at his reactions to your questions as it sounded similar to a reaction I got from mom when I asked her what she wanted to eat for breakfast that morning. She said "dead people don't need to eat." I told her that was true, but to just humor me. Later when my husband came home for lunch, she told him that she was dead and I didn't believe her. He's a pastor and she asked him what he was going to say at her funeral and reminded him he'd need to get a "fill-in" pastor for Sunday as we she wanted to buried in another state. Once I got a mirror and let her look in it to show her that she wasn't dead, and she just said that didn't prove anything--she was dead and she would be buried in a few days. So, I just played along from then on and as I said, by the next morning, she'd forgotten it. She was a bible study teacher at church and a business and english teacher at a high school, and for the past few days, she's been "teaching" all night and every time she's falls asleep during the day. It's amazing how she can quote scriptures, do math problems, etc. It seems as if your dad isn't upset about it though and mom wasn't either--very calm. Strange. . .


Fri Apr 30, 2010 9:09 pm
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