Looking for advice and support. Caring for my grandmother with Charles Bonnet Syndrome.

Hi everyone. I’m the primary caregiver for my grandmother, who has significant vision loss and was diagnosed with Charles Bonnet Syndrome (CBS). She experiences vivid, complex visual hallucinations. Mostly people and patterns and also struggles with spatial disorientation, which makes navigating the home difficult and sometimes distressing for her.

I’m a social worker by training, so I have some clinical background, but CBS isn’t something that came up much in my education, and being a family caregiver is a completely different experience than being a clinician.

A few things I’m hoping to learn from people with lived experience:

•	What actually helps when your loved one is mid-hallucination? I know reassurance and not playing along are often recommended, but I’m curious what specific phrases or approaches have worked for real people.

•	Spatial disorientation — has anyone found environmental modifications that made a real difference? (Lighting, contrast, floor markings, etc.)

•	Emotional toll — she sometimes feels embarrassed or frightened by what she sees. How have you helped a loved one build some acceptance or peace around it?

•	Any resources (books, organizations, communities) you’ve found genuinely helpful?

She’s sharp, has a good sense of humor, and handles a lot of it with real grace — but I want to make sure I’m giving her the best support I can.

Thanks in advance to anyone who shares.