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hi everyone just asking bit of advice my husband has lewy body he calls me grace 1 and theres grace 2 last early hours this morning he was putting coat on to go look for grace 2 he hardly ever sleeps and thats with sleeping tablet could anyone give me any advice please thank you
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You are not alone in this. What you’re describing is very common with Lewy body dementia and it can be incredibly distressing for both of you.
With LBD, the brain can create very real experiences that feel absolutely true to the person. The idea of “Grace 1 and Grace 2” is not him trying to upset you. His brain is misfiring and trying to make sense of what it’s seeing or feeling. Poor sleep makes this much worse.
A few things that often help in the moment
• Avoid correcting or arguing about Grace 2. Telling him she doesn’t exist can increase fear and agitation
• Respond to the emotion, not the story. You might say “She’s safe right now” or “You don’t need to go out, everyone is okay”
• Gently redirect. Offer a warm drink, sit with him, suggest resting, or change the environment slightly like dim lights or quiet music
• Keep doors locked at night if wandering is a risk and place the coat out of sight if possible
Sleep disruption and nighttime confusion are very common with Lewy body dementia, even when sleep medication is used. Sometimes medications actually worsen hallucinations in LBD, so it’s important to tell his doctor exactly what you’re seeing. Adjustments can make a difference.
There’s a helpful section on nighttime confusion, hallucinations, and agitation here that may give you more ideas
You may also find support in the sleep and nighttime safety section
Most importantly, please know this is not something you are causing or failing to manage. Lewy body dementia is especially hard because symptoms change quickly and sleep issues are relentless. If you can, reach out to his neurologist and describe the exact behaviors you’re seeing at night.
You are doing the best you can in a very difficult situation.
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https://alzheimerscarehub.com/guides/anxiety-sundowning-agitation?fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExYkJ4dDB1VkJrSGRzVVVtWHNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR4dTc6ltWsWg9NoouUkFpAEk39kl5V3o8xE2dKHPYD8pPMPTLYGalZ6vZ1CDg_aem_WvvYVfC7vItrenkkTqc5WQ
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https://alzheimerscarehub.com/guides/sleep-nighttime-safety?fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExYkJ4dDB1VkJrSGRzVVVtWHNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR6AR-rhXQT45sNXohpR-rSNjPfbCA-h8ZUCY3O3X88AOwwPcj1iiBXPDxjrXA_aem_ijceKjINpG6g7_VXRMDvmQ
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