For those caring for ALS with Lewy Body Dementia, can you say on average, how many hallucinations are they having in a month?
Just trying to see if Dad's hallucinations are the normal range - if there even is a normal range. The doctors don't really know. Dad has about 4-5 hallucination in a month. Today's was a doozer!
No. Every patient is as individual as his or her own thumbprint. There is no average for hallucinations. For my brother they were much more frequent in any time of any anxiety. Much less frequent when relaxed. They also could be brought on by patterns such as marbled walls, floors, hotels with patterned carpet, wallpaper with patterns and etc.
My husbands hallucinations or delusions are a daily occurrence. Sometimes it’s just seeing little things on the floor, sometimes he thinks we are moving to a new house tomorrow. The other day he said there were little springs on the floor. Even after I showed him there was nothing there. So I told him that he saw things before when he had a fever. I gave him two Advil and said when the fever goes away, so will the delusions. He believed me and after only a few minutes he said the things he saw were gone. I’m not sure if this will work every time or not.
Does your dad have a neurologist? My husband was diagnosed with likely LBD and his neurologist always asked in detail about his hallucinations, which were not frightening or disturbing to him and no antipsychotic medication was prescribed. He did have nightmares for years which he started acting out, a common early symptom.
I would definitely speak again to his doctor and preferably a neurologist since his hallucinations are distressing to him. The only time my husband had frightening hallucinations/delusions was a few times when he had UTIs, mostly in the night, so that might be worth asking about also.
Thank you. Yes, we have spoken with his neurologist. He gives us very general information - says what Dad is going through is quite normal. I did have him checked by his PC - no infection. And in regards to any antipsychotics - at his age - 96 - it was decided that he would do better without because he has falling issues as well. The meds made him dizzy - even at low doses, so it's safer to go the non-rx route. I guess everyone's journey with this would be different - I was just hoping for an idea. Thanks again for you input! I appreciate it.
For my brother his were sometimes brought on by stress, such as shopping, eating out in a restaurant. Sometimes by patterns (wavy intricate patterns in a carpeting or marbling on walls). More they hit at night in elaborate and intricate screnarios of garden or pool party, immigrant woman huddling in corner, etc. Some were story like and some involved frightening almost monster-like images.
He got many fewer when he went into ALF care. MANY fewer. His handwriting also improved and he could once again write letters. I was told some early cases do improve when someone ELSE takes over anything like rental payments, bills, POA, etc. There is less stress and anxiety and fewer hallucinations.
I think each case is so individual. My brother died of sepsis before his Lewy's could progress appreciably. Would have been as he wanted. So I cannot know where it would have gone.
Thank you. Interesting about the different things that brought it on for your brother. My Dad's are always during sleep and upon wakening. Today was another - yelling out for my Mom (She passed away 10 years ago) His are increasing - I have been handling all his affairs for years now. He doesn't even ask about his bills, bank accounts, or any of that any longer. I think the most stress he might have is no big projects. He still wants to use power tools and saws, drills & such and that's just not allowed any longer. Poor guy. He's always been a McGiver of the family - that man could fix anything. But, at 96 he's very limited - even his hands are stiff. So we just carry on as best we can. I'm just worried the hallucinations will increase. It's so frightening for him. Very sad. Thank you for your response.
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Every patient is as individual as his or her own thumbprint.
There is no average for hallucinations.
For my brother they were much more frequent in any time of any anxiety. Much less frequent when relaxed.
They also could be brought on by patterns such as marbled walls, floors, hotels with patterned carpet, wallpaper with patterns and etc.
The other day he said there were little springs on the floor. Even after I showed him there was nothing there. So I told him that he saw things before when he had a fever. I gave him two Advil and said when the fever goes away, so will the delusions. He believed me and after only a few minutes he said the things he saw were gone. I’m not sure if this will work every time or not.
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I would definitely speak again to his doctor and preferably a neurologist since his hallucinations are distressing to him. The only time my husband had frightening hallucinations/delusions was a few times when he had UTIs, mostly in the night, so that might be worth asking about also.
He got many fewer when he went into ALF care. MANY fewer. His handwriting also improved and he could once again write letters. I was told some early cases do improve when someone ELSE takes over anything like rental payments, bills, POA, etc. There is less stress and anxiety and fewer hallucinations.
I think each case is so individual. My brother died of sepsis before his Lewy's could progress appreciably. Would have been as he wanted. So I cannot know where it would have gone.