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My mom has Lewy Body Dementia. My father passed away five years ago and he also had LBD. My mom has been talking to my dad recently, saying she can see and hear him which she couldn't the past few years. Tonight she told me that he was sitting next to her talking about them going on a cruise together next month. My parents never went on vacations together in most of the 55yrs they were married. As soon as I responded to her with "Oh, a cruise" she yelled at me saying "It could happen. He was here. He came back for her." She was very agitated. I told her I knew she really missed him and wanted to be with him, that a cruise is a beautiful vacation. She just stopped and started staring at the TV again. I feel so lost at what to say to her sometimes. I am her daughter and her caregiver.

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Sheila, welcome!

I think you responded just right.

If mom is experiencing a sudden change in her level of upset and agitation, consider the idea that a UTI may be the root cause. In elderly folks, the can cause behavioral changes with no other symptoms.
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Reply to BarbBrooklyn
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Great answer! I know it’s hard. And lonely.
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Reply to Suzy23
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When my late husband was in his dying process he too saw and talked to people that I couldn't see but he could. I believe this is quite normal, and for your mom so very comforting.
So I would just go along with whatever she is telling you that she's seeing and don't try and argue about it, but just agree and tell her how wonderful that she gets to go on a cruise with her husband, and you know she'll have a great time.
Perhaps next month your father will come to take her on that cruise to the life that is beyond death.
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Reply to funkygrandma59
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Yes, this sounds very like a Lewy's Body hallucination. They are exceptionally real. My brother had them and he could describe entire pool parties outside his window with "The one guy has on white shorts and a white towel round his neck; he has black hair, oiled back like an Elvis haircut".
Or "There is an immigrant woman in the corner, dressed in a brown homespun cloak, and she is hovering over her baby, trying to protect it; she's hiding".

Now if these are new to her, these hallucinations, you are going to want to discuss with her doc. You can begin with a simple dipstick to test her urine for nitrites and leukocytes to be certain there is no UTI involved here; you wouldn't want to miss something thinking this is common to Lewy's. These dipsticks are easily got through amazon (get the Azo which are easy to read) or at local pharmacy. Any sign of infection means a Urine C&S done at lab.

As to what to do about it, there honestly isn't much after medical is checked. You might ask the doctor if this ramps up the anxiety a lot for some try at a mild anti-anxiety drug. Eventually these things become something that is pretty difficult to handle one on one 24/7 without several shifts of several caretakers each. Only you can make those decisions personally and for yourself.

I wish you the best.
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Reply to AlvaDeer
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You are doing great! Just give lots of love, because LBD is going to take her from you in the near future. Get help to help yourself when you can.
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Reply to Tiger8
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My mom is in year 6 of Lewy Body and now is in a NH. She moved out of the MC. She has recently started seeing my dad. He visits and she makes his bed everyday. She chats about him and I just go along with it. She looks happy and content. Not a bad place to be when you have dementia.
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Reply to Sadinroanokeva
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roadtrip54 Dec 24, 2024
Can I ask why your mom was moved out of MC? How would I know it's time for my family member to move? She's been in MC for 2 years.
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During the last year of her life, my mother with dementia was constantly talking about her mother and sisters who were all deceased, and dreaming about them. She was quite obsessed with them, actually. Not my father, however, who she was married to for 68 years and always cutting down for one reason or another. I believe moms deceased relatives were preparing her for death and to get ready for an exciting journey.
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Reply to lealonnie1
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Sheila70: Perhaps she has a U.T.I.
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Reply to Llamalover47
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