Lewy Body Dementia.

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It's not about you.


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My husband has Lewy Body. Can we talk?
So sorry. I wrote a long winded message then my iPad died. My mom was diagnosed with LBD about 5 years ago. In the past 5 years. She also had an acustic neuroma tummor removed twice. The last one sitting on her brain stem. She fell pretty bad and had hip surgery, bowel surgery, and eye surgery. My mom has 7 kids and 14 grandchildren. She waited on my dad hand and foot. She was a nurse by profession and has always helped anyone who needed it. She completely needs full skilled nursing. She didn't want to be in a home, so one of my sister' stakes care of her. She lives out of states so I don't see her too often. It's horrible. I call to speak to my mom, but her speech is bad. I can't understand her. I recently visited her, b/c my sister told me she is getting worse. Instead of talking, I started reading GuidePost and Angels on Earth stories. She was a faithful subscriber to those magazines. So the point of my post.... LBD is painful to watch, but I think about my mom and wonder how is she feeling. She was so independent and now she can't do anything for herself. I just wonder the last time she drove her car, was she thinking this is the last time I'm going to drive? She wants to talk and tries too, but gibberish comes out. My heart breaks for her b/c her body is failing but her mind is there. On boards like these I hear from the caregivers, but I like to hear from a person suffering with LBD. I just think it's so sad. No one deserves this painful illness.
You might want to go to another forum that can give you more information and support regarding LBD. Go to ftdsupportforumdotcom and look for the section on other related dementias. I was worried in the past year about an acoustic neuroma, but that turned our not to be the case. There is also another forum for acoustic neuromas, ANAdotcom, I think. You can google it. That one has a lot of info from people who've had surgery and how they've done afterwards. Several bad health problems here, find more specific sites for more practical help.
I had to take his car keys today.

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