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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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7. Dr. Jekyll and Mrs. Hyde

People with Lewy body disease often have hallucinations about inanimate objects moving or seeing things that aren't there. Mother had these problems too, in a relatively mild way. Usually, these problems occurred only in the late afternoon or evening. This "sundown effect," in which symptoms worsen in the late afternoon and evening, is fairly common among people with Alzheimer's disease and apparently for those with Lewy body disease as well. As noted, these problems were relatively mild, but sundown also brought a delusion that caused a lot of difficulty and grief in our family: Mother began to think that she wasn't in her own home and that Dad wasn't her husband.

"Mother began to think that she wasn't in her own home and that Dad wasn't her husband"
Mother would be fine in the morning, but the delusion often appeared by late afternoon, when Mother felt an urgent need to go home. To get a ride home, she would usually call one of her two children who live locally and express her dire circumstances. They started to dread getting a phone call. If Mother called and said, "Hello, this is Mother," they'd know she was all right; if she said, "Hello, this is B [her first name]," then they knew they were going to be asked to take her home. Mother could really make us feel guilty saying, "I'm relying on you," "You promised you'd help me," "My parents are waiting for me and don't know where I am," among other things. When told that she was already in her home and that Dad was her husband, she'd say, "Yes, this is my home, but it's not my home" or "There are two identical houses and two identical Dads and I'm with the wrong ones."

These delusions hit Dad particularly hard, since Mother could become quite agitated and adamant that she had to go home. Although he knew it was all due to the illness, it was hard for him to deal with her agitation and hard for him not to take it personally, since Mother seemed to be saying that she didn't want to be with him. He would tell Mother that she's staying there and she'd be sleeping in the bed with him, the bed they'd shared for nearly 50 years. From Mother's perspective this was horrifying, because she didn't want to share a bed with someone who wasn't her husband. If Mother could be calmed down and did go to bed, the next day she was fine — until the afternoon. Dad started saying she was like Dr. Jekyll and Mrs. Hyde.

"Mother wandered out of the house to find her real home"
On several occasions Mother wandered out of the house in the afternoon to try to find what in her delusion she thought was her real home. One time, Dad found her on the corner of the street. Another time, she went to the home of a neighbor, who took her in and fed her. Both times, it was only after extensive persuasion that Dad could coax Mother to return home.

When Mother's pleading was strong or Dad was desperate for help, one of us would drive over to calm the situation. Often, it was enough for someone else to be there until Mother became too tired to stay up. If that didn't work, the most effective treatment would be to take Mother out for a drive in the car. After spending 10 or 15 minutes in the car, she was so happy to be home that she would give Dad a big hug and ask if he'd missed her. In her mind she'd been away at an identical house somewhere far away.

The medication (Zyprexa) prescribed for the hallucinations did calm Mother down, but mainly because it tended to knock her out. After taking the medication, she became very sleepy, which didn't seem to be much of a solution either. It was mainly because of the delusions and the difficulty we had in dealing with them that we knew Mother and Dad needed a full-time, live-in aide.

6. Columbia Presbyterian Hospital
8. Living Arrangements and Daycare
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