Want to ask about Sundowning please.

[60'sGirl]

My husband has Lewy Body dementia with Parkinsons and spends most of his time in bed, his mobility is not good.
Sundowning has been going on for a long time but usually at tea time and he spends lots of the night talking to himself, scratching, clapping and shouting out, so much so that I am exhausted when I get up and going to go back into the other room, he asked me not sleep in there but now I have to.
He gets up at 7 and is usually fed and watered by 8.15 and goes back to bed and sleeps for about an hour, wakes up and is lucid for about an hour and then the sundowning starts and goes on all day. Talking about the past, what he is going to do in the future (fish and chip shop is the latest) who is coming to see him today and who he can see in the room. Every he talks about doesn't make any sense then after a while I can't understand what he is saying then he falls asleep for an hour, wakes up and starts again and so it goes until he goes to bed at 7.30 for a couple of hours. One strange thing he has started doing is pleating the bed sheet and tells me it is a book, a TV, a shop counter and goes mad if I touch the sheet when it is just on the bed saying I have broken whatever it is in his head. I can monitor him on the camera and he never seems to stop pleating and folding.
Is this usual for Lewy Body as I don't know what is usual, it is the time it goes on for which is wearing, a couple of hours at teatime I could cope with but this last 4 weeks has been awful. I don't know what to do, I have a Parkinsons nurse, Social Services etc but no actual dementia person, the Memory Clinic dismissed him a few months ago. What I am asking is this the norm with people with Lewy Body ? Thank you.

 

[windyhill]

My husband has Lewy Body dementia with Parkinsons and spends most of his time in bed, his mobility is not good.
Sundowning has been going on for a long time but usually at tea time and he spends lots of the night talking to himself, scratching, clapping and shouting out, so much so that I am exhausted when I get up and going to go back into the other room, he asked me not sleep in there but now I have to.
He gets up at 7 and is usually fed and watered by 8.15 and goes back to bed and sleeps for about an hour, wakes up and is lucid for about an hour and then the sundowning starts and goes on all day. Talking about the past, what he is going to do in the future (fish and chip shop is the latest) who is coming to see him today and who he can see in the room. Every he talks about doesn't make any sense then after a while I can't understand what he is saying then he falls asleep for an hour, wakes up and starts again and so it goes until he goes to bed at 7.30 for a couple of hours. One strange thing he has started doing is pleating the bed sheet and tells me it is a book, a TV, a shop counter and goes mad if I touch the sheet when it is just on the bed saying I have broken whatever it is in his head. I can monitor him on the camera and he never seems to stop pleating and folding.
Is this usual for Lewy Body as I don't know what is usual, it is the time it goes on for which is wearing, a couple of hours at teatime I could cope with but this last 4 weeks has been awful. I don't know what to do, I have a Parkinsons nurse, Social Services etc but no actual dementia person, the Memory Clinic dismissed him a few months ago. What I am asking is this the norm with people with Lewy Body ? Thank you.

 

[windyhill]

My wife has alzheimer's with vascular dementia. Her sundowning begins normally between 2 and 3pm and continues until 7pm. If she is having a bad day (moody, argumentative etc.) the sundowning period is very challenging and tests my patience to the limit (and beyond) especially when I'm making dinner. She becomes delusional and usually the capgras syndrome kicks in during this time where her husband (me) disappears, and another person (normally a relative of mine) is present. I used to find this disturbing but I am now used to it.
If she is having a passive day (not so common) she can hallucinate that there are other people in the house or that they are coming later, normally for dinner. She still gets delusional even in this state.
The way I have managed to somewhat alleviate the sundowning is that we sit down together around 8pm and I put on a stream on the TV of sitcoms which we both enjoy such as Still Game. We watch programmes that she likes until 10pm then we go to bed and she is then asleep within about 10 minutes until about 5-6am.
If she is in a bad mood, the mornings are a nightmare. She has nothing to do because of her total lack of cognitive skills so she occupies herself by making a nuisance of herself and creating argument after argument. It is quite exhausting.
She has just started taking lorazepam recently (she has been on memantine for 6 months) and I'm hoping that will slow her down enough to minimise the sundowning and hallucinations.

 

[60'sGirl]

Thank you - I have tried watching TV with him but he ignores it and goes on with scratching and folding and talking to himself so I give up in the end and go back downstairs and leave him to it. I also leave when he starts being argumentative but sometimes after I have had my say which I know I should zip it but it is not always easy.
He shouts and I can hear him through the intercom and I dread going up sometimes not knowing what he is going to come out with next.

 

[SeaSwallow]

Thank you - I have tried watching TV with him but he ignores it and goes on with scratching and folding and talking to himself so I give up in the end and go back downstairs and leave him to it. I also leave when he starts being argumentative but sometimes after I have had my say which I know I should zip it but it is not always easy.
He shouts and I can hear him through the intercom and I dread going up sometimes not knowing what he is going to come out with next.

I might be an idea to have a talk with your husband’s GP, there are medications which can help with these symptoms such as Memantine.