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My husband is in the fairly early stages of Lewy Body Dementia with Parkinsonism. (No hallucinations yet. But yes—Cognitive impairment eg, following instructions, finding words and troublewith some Visual processing—like confusing the phone and the tv remote). The hardest thing is getting him “settled”. He wants to take a lot of naps and gets in bed, asked me to help him cover up, etc. This makes sense cause his movements are stiff. But then after he’s lying down for 2 min he’ll get up, call me, “can you help me with my quilt”. I go in “what’s wrong”, he says “I don’t know, should I face this way, or that way?” “I want NYU socks off “ Etc etc. This can happen literally 10 times. He’ll finally decide we wants to lay down on the living room sofa. And it starts all over again. I’ve been working so hard on my patience with him but this gets me nuts!!! We saw his neurologist today who is upping his anti depressant and may increase his sinemet. She said we could also try a low dose benzodiazepine but she’s understandably reluctant to go down that path. It would just help me to know others are dealing with similar things.

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Dad just passed with PD with dementia, and now I will always wonder about LB. And, yes, he used to drive me nuts with his fixations -- usually about going to the bathroom. He was always sure he had to go, even if he'd just gone. And, in his mind, he always either had loose stool for 3 days or it had been 3 days since a BM. He insisted on taking Kaopectate constantly, so I gave him chocolate milk in a medicine cup, & he never knew the difference. I miss him terribly. You will learn to choose your battles and to improvise.
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Thank you talkey. I know this goes with this condition but it’s nice to vent and get a little feedback/support.
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