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SweetSioux Asked July 2021

Does Charles Bonnet Syndrome cause confusion? My husband has experienced hallucinations usually upon waking.

He has awakened me during the night coming to my side of the bed while he is trying to find the bathroom. (The bathroom is the other direction close to his side of the bed. This afternoon I returned to the family room to find him standing and peeing on the floor. He thought he was in the bathroom. Am I dealing with more than CBS here? My heart breaks for him. Who should I talk to? What can I do for him? I remained calm and helped him get to the bathroom to finish, cleaned the floor. I don't think he remembered it later. He had the "look" he gets when he is having a CBS hallucination. He's experienced significant vision loss due to glaucoma. I first noticed the CBS hallucinations about 6 months ago. He's not incontinent -- it's not incontinence.

LavenderBear Jul 2021
My Mom was diagnosed with Charles Bonnet Syndrome due to Wet Macular Degeneration over 10 years ago. She has never had confusion from it. She actually enjoyed seeing the little animals and flowers. She is aware that it's a neurological issue due to the loss of sight. The Doctor explained it to her & she understands it.

Now - on the other hand - when she had delerium due to an infection, she was very confused & had similar type hallucinations.
But, it was very obvious that something was wrong and she required hospitalization due to her altered mental state for the infection. (She had a UTI and Cellulitis)

SweetSioux Jul 2021
Thank you for your kind message. My husband was just very confused and thought he was in the bathroom. He had tinkled a bit on the floor. When I told him what he was doing and directed him to the closest bathroom he finished his business. He hasn't mentioned the incident so I don't know if he doesn't remember -- or is just very embarrassed. I was a couple rooms away in the laundry room when he got out of his chair and noticed him standing next to his chair. He had that far away look in his eyes he gets when he's having his CBS visions and I asked what he was doing -- he said going to the bathroom (and he was!) -- he thought he was standing next to the toilet. I told him where he was and took him by the hand into the closest bathroom where he finished peeing. A couple times I've awakened in the night to him walking next to my side of the bed -- trying to find the bathroom. I do think I will get an alarm to know when he gets out of his bed or chair. Thank you again for your wise counsel.

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cwillie Jul 2021
Many people who lose their sight "see" images that aren't there but nothing I've ever read about CBS mentions that kind of confusion where they are an active participant in the hallucination.

"People with CBS visions usually come to realise that the images are not real - that they can't touch them and they are 'mirages'. In medical terms they are illusions (false images which the person knows to be false) rather than delusions (false images which the person firmly believes are real). In a Canadian study, 8 out of 10 of participants knew that the visual hallucinations were not real after the first episode, and 9 out of 10 by the second, although a few did not realise until they had experienced 10 or more episodes.
At first, however, those experiencing the hallucinations may think that they are real. They may prove to themselves that they are not by turning on lights, or by reaching out and attempting to touch the images. One patient described trying to fight off the images of wild animals by using an umbrella."

https://patient.info/eye-care/visual-problems/charles-bonnet-syndrome#nav-2
SweetSioux Jul 2021
Thank you for your kind response. My husband thought he was dreaming when he would have the CBS hallucinations or visions. I have talked him through them and he seems to see our home but with other things overlapping -- a lady, a cat. He sometimes thinks something has happened to the house like things are in disarray. A day or so ago he thought a war was going on and the house had been damaged from everything going on. He often remembers his visions. He understands what is going on now but at the time it helps if I talk to him and reassure him. Many of the images he sees (woman, cat) are small. He thinks they are small because they are far away but when he tells me where he saw them, the visions were just a few feet away. So I summize that any animals or people appear smaller. At the time it feels very real to him. They always or almost always occur when he is waking from a nap or sleep.
Countrymouse Jul 2021
Will he use a portable urinal? If he can, and you combine that with a chair alarm so that you'll know when he gets up, it'll give you a better chance of being in time to prevent future bathroom misunderstandings.

You say he didn't remember the incident later. At the time, what did he say or how did he respond when you explained he wasn't in the bathroom?

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