It seems surreal that Lewy Body Dementia is getting “press” since Robin Williams’ suicide and the news that Mr. Williams had been diagnosed with LBD. For so long, few people knew what Lewy Body Dementia was. Ten years ago, our family became aware of it because we realized that my mother-in-law Audrey had it.
Looking back, the first hint was the day she called and said to me, “The life insurance company doesn’t want me to be insured with them any more.”
What? What a strange thing to say. Although she was 88 years old, there shouldn’t be any problem with her insurance policy.
“Really, mom? How do you know?”
“The letter they sent me.”
“Okay. Well, when I come over later today, I’ll look at it.”
“I can’t find it.”
“Oh.”
We didn’t realize it but that was the first evidence that we noticed of her paranoia–one of the symptoms of Lewy Body Dementia. She believed the insurance company was against her and withdrawing her policy. In time, she believed everyone was against her–including us–her son and daughter-in-law, even though she came to live with us and we provided for everything she needed. She still believed we were trying to kill her.
Another symptom was her delusions: she could tell you the history of her life–completely re-created. With a straight face, she could tell you that Don, her second husband, had murdered her first husband so that Don could steal her money. The truth was that Don was her first and only husband and had died only a short time before.
Another symptom of Lewy Body Dementia is hallucinations. She could tell you that the TV was spewing out poisonous water. She would hold up anything–a piece of paper–in front of her face to prevent the spray from reaching her face.
And finally, she had Parkinson’s symptoms: she shuffled along, and at times her hands and fingers shook.
In the beginning of our journey with her disease, we tried to talk her out of her wrong beliefs and false stories. But in time we realized it was futile. It only made us frustrated that she would never agree and it distressed her that we didn’t believe her. Our responses became cooperation. Oh, there’s a man coming into your room with a knife? We will get a new lock on the door so that he can’t come in. And we also found an effective medicine that prevented many of her symptoms, including her ceaseless pacing throughout the night.
If you’d like more information about Lewy Body Dementia, check out www.lbda.org.
I’ll share more in my next post.
