I think my mother has this. About a year ago, she started seeing visions of people and insects in her room at night. We sent an exterminator and he confirmed there were no bugs. I also noticed her memory was getting worse but not enough to worry. For example, she would forget where she put her keys and sometimes conversations go into a loop of repeating herself but she still has no issues with bills, medications or doctors’ appointments, etc… She is 73. She is diabetic and has been diagnosed with scleroderma.
Her insurance is not the best so her medical care, though at a very good hospital, is handled by different doctors each time. Communication can easily fall through the cracks. Unfortunately, we are not currently in a good financial situation to get a better plan.
She had head trauma a couple of years ago and also suffers from vertigo so she has neurology appointments about twice a year. She had normal MRI’s. One comment was that her veins were thin, but they were not sure why and thought it could be genetic or due to aging. The neurologist thought that one of her medications to treat scleroderma could be the root of her problems as it can have side effects on memory and can cause hallucinations. Her dose was reduced and now discontinued and she still has these visions.
She only used to see these visions in her bedroom at her home as she fell asleep or if she woke during the night. However, recently, we were in my backyard after dinner and she pointed out that she saw people dressed in strange 19th century clothing in the far side of my yard. On a drive through a wooded area with tall trees, she asked me why we were driving through so many tunnels. All of this happens in the early evening and at night when the light is low. She is fine during the day. The visions never make noise or try to interact with her, they usually disappear once she focuses on them but of course, it is highly upsetting to her.
I honestly am worried about dementia but then I saw an article about this syndrome and it has to do with the sight. It is also not a good diagnosis but the symptoms fit. I want to discuss this with her ophthalmologist but I would like to hear from anyone who is familiar with this or has dealt with this with a loved one. What questions should I ask the doctor? What should I look out for in her behavior? How much worse can it get? Any advice would be welcome.
Sorry I don’t have any helpful advice but you may also want to look at sundown syndrome. It’s not really a close match since it sounds like your mother isn’t agitated or confused, but sundown is associated with changes in behavior in the evenings and at night. Charles Bonnet does look like a closer match since it’s also associated with diabetes, though.
My mother had visual hallucinations - probably Lewy’s Body dementia. Her original diagnosis was Parkinson’s but LB symptoms were a much better fit. She actually kind of enjoyed the hallucinations and was mostly aware that they weren’t real. She liked to talk about them and it really was kind of interesting what weird things the brain will do. In her case the other main sympton was losing her sense of time. She stopped being able to deal with calendars.
I agree with @mathmom . Her symptoms sound consistent with Lewy Body Dementia or Organic Brain Syndrome because of her previous head trauma. She would benefit from a neurologist appointment .
A neighbor of my mother’s had this years ago although we didn’t have a name for it. The neighbor was diabetic and losing her eyesight. It took quite awhile before her family realized she was going blind. She would describe birds and vivid butterflies. I don’t believe dementia was involved at all.
Yes! My mother has lost most of her vision to macular degeneration. She had halucinations like you described and thought she was losing her mind.
Mom was so relieved when I read to her about the syndrome. Her brain doesnt receive all of the signals it used to so it makes substitutes. All women on TV are blonde with hair parted in the side. Her eyes don’t see them any more so her brain substitutes.
She is even able to laugh about it sometimes. One article reported about a lady seeing tiny people in outrageous costumes. So I’ll ask her if she’s seen any of those.
But yes, she has seen bugs covering the wall that aren’t there. Terrifying.
I was with her at her final Opthamologist appointment. The one where he told her she needn’t come back because he couldn’t do any more for her. It sure would have been nice for the doc to have warned her about this syndrome.
Wow Missypie, thank you for sharing your mom’s story. My mom is quite terrified of going to bed at night because of this. She has told all her doctors this and they all say they don’t know what it is. They even offered her sleep medication. She doesn’t want the medication. She wants to understand what is going on. Very frustrating. I keep telling her they are not real but I can understand how that does not make it better.