Seeing Is Not Always Believing

This year has been strange and difficult for everyone. In this very unusual 2020, my family experienced a rare and unfamiliar condition relating to my mother’s eye health.

I asked her if I could share this story to help others because it was discovery learning for us and it was a shock. It would be much better for people to have some prior knowledge of this condition just in case it happens to them.

My mother has dry macular degeneration

My mother, who is in her mid-nineties, has had dry macular degeneration for over 20 years. She’s classified as legally blind, but she copes well and most people can’t tell that she has these sight difficulties. Mum’s as sharp as a tack and doesn’t have any memory problems. She lives in residential care with my father, unfortunately, a long way from me. Our conversations of late have had to be over the phone because visits during the COVID pandemic are strictly limited.

My mother started making strange little comments

So - what happened to make this year even more confusing?  My mother began making comments to me regarding things she had never mentioned before. And they were strange little things, such as saying that the nurses had left clothes all over her room, especially on the bed, and it was very untidy. My mother had been a dressmaker and loved her clothes, and dressed nicely each morning, so this was particularly upsetting for her. I assured her that someone would be in to help tidy up soon. She can’t reach most of the shelves herself because she’s in a wheelchair. She said she’d asked my father to put the clothes away but he wasn’t cooperating. This was strange for my usually very helpful father. This conversation didn’t go any further because it was time for their lunch. I didn’t think much more of it at that stage.

Seeing odd things

Another time I called, my mother told me about looking out the window to see the lovely flowers on the big tree outside their room. There is indeed a tree there, but as it was winter, and this isn’t a flowering-type of tree, I was puzzled.

I was also told about all the shelves on the wall, which she knew weren’t there, but she thought they were a good idea!

I knew we had a problem

On the next call, I heard about the people who had been visiting “dressed in full regalia” which included headgear and cloaks to the ground. Alarm bells went off for me then, because groups of people aren’t allowed in to visit in residential care at this time, and there’s no reason why anyone should be “dressed up” like this.

When her food started moving around the plate, and she said my father wouldn’t catch it for her, I really knew we had a problem.

Diagnosed with Charles Bonnet Syndrome

A geriatrician was called, and after a lengthy visit, she diagnosed Charles Bonnet Syndrome. We said “Charles who?” We’d never heard of this condition, and it meant nothing to us. But it does now! In very brief layman’s terms, the brain is “making up” for the things the person can’t see, by sending lots of other “visions” to the eyes. The “visions” usually aren’t scary, and the person usually knows they’re not real.

Many people aren't aware of Charles Bonnet Syndrome

Specialist eye doctors don’t always mention Charles Bonnet Syndrome to their macular degeneration patients, and sufferers often discover it for themselves somewhere down the track. The unknown can be frightening and people wonder what’s happening to them. Sometimes they’re scared to tell anyone in case others think they’re losing their mind. It’s much better to know and understand in advance what might occur if this happens to you or a family member.

A very bumpy ride for everyone

Once we had a diagnosis, we had to work out how to help my mother (and my father!) cope with this dilemma. Everyone had to develop strategies - it might be only one person seeing the “sights”, but everyone else is along for the ride too.

As it turned out, this was just the beginning of a very bumpy ride for us!

Click here for a full explanation of Charles Bonnet Syndrome.