Charles Bonnet Syndrome and Visual Hallucinations

Picture: Charles Bonnet


I want to write about this syndrome as it is not very well known. I had occasion to take Mum to the Sydney Eye Hospital the other week - one of the best in the world. The specialist asked if Mum had hallucinations. I was really surprised.

Charles Bonnet Syndrome is characterised by the presence of complex visual hallucinations seen by people who are vision impaired, for example, due to glaucoma or macular degeneration, both of which Mum has.

The condition was first described in 1769 by Charles Bonnet, a Swiss naturalist, who documented it in his 89-year-old grandfather, who was nearly blind from cataracts in both eyes, but perceived men, women, children, carriages, buildings and tapestry patterns.

The syndrome is portrayed in the book "Phantoms in the Brain" by V. Ramachandran and in "Sacred Games" by V. Chandra. It is thought that James Thurber, American author, may have derived his extraordinary imagination from this syndrome. Thurber was accidentally shot by an arrow in one eye when he and his brother were playing William Tell.

The hallucinations commonly involve detailed images of people, buildings, patterns or straight lines (not an unfamiliar scenario if you're young enough to have lived through the '60s!)

The experience can be pleasant if the sufferer understands what is causing these hallucinations. But for a person with dementia, the hallucinations can cause distress and fear; or the elderly person may believe there really are people in their house or garden. Younger people with Charles Bonnet Syndrome are aware that these images are not real.

Charles Bonnet Syndrome can affect people with significant vision impairment of all ages. However it is more common in those who lose their sight later in life. The condition appears after a period of worsening sight and is most common in people with macular degeneration.

Sometimes the hallucinations stop within a year to 18 months.

There is no cure or treatment for this syndrome. However it may be useful to discuss it with elderly relatives who are seeing people who are not there. This explanation may put their minds at rest.

Mum was seeing people outside her bedroom window, shadows of people on her bedroom wall and intruders in the garden.

Although she has quite advanced dementia, I was able to tell her these things were caused by her macular degeneration, which is a lot easier than trying to argue about it logically (waste of time), accusing an elderly person of imagining things or telling them they have hallucinations caused by dementia.

Many of the hallucinations suffered by elderly people with dementia may in fact be caused by worsening vision.

Things are getting worse.....

A few weeks ago - or was it a few months? - Mum stopped being able to recall what day it is. She takes vitamins - no pharmaceutical medicines - and I got her one of those plastic pill boxes with the days of the week on it. I also bought her a little red box that has a button that you press and it says, "It's Thursday, 9th September, 2010 and it's just past three o'clock." This came from the Blind Society. It's been a huge help and has prevented many a phone call to me to ask what day it is. It cost around $200, but it's worth every cent.

The last few days, though, I've noticed she no longer knows what month it is. She'll start talking about something she recalls such as the birthday of her brother and she'll say "I was thinking about him because his birthday is coming up this month." Her brother's birthday was in February. This is September.

Quite often, she'll be out shopping and say, "I want to buy something for Loretta for her birthday. I'll have to send it soon or it won't get there on time." Her birthday is in May. And this is September.

I've learnt from the marvellous Alzheimers Reading Room not to contradict her when she gets the month mixed up. I just agree with her and change the subject. That way I don't offend her or make her frightened that she's 'losing it'.

Having the box that tells you what day it is doesn't help with the cat food. I put out the cat food for each day, label it and leave it in an obvious place on the kitchen cupboard.

Every day when I go to her house, that day's cat food is untouched, but she has walked down to the shops and purchased as many tins of cat food as she can carry and carted them home. The cat food she bought has been opened, sometimes nine or ten cans of it, and left all over the place. There'll be bowls of cat food in the bathroom, bedroom, kitchen, dining room and laundry. There'll be opened cans in the cupboard which have to be thrown out and more open cans in the fridge.

If I have to go to work, I'll get calls in the mornings, "There's no cat food in the house!" I'll tell her to walk to the kitchen with her mobile phone. I'll say, "Look right in front of you now. Reach out your hand. The cat food for today is right there on the cupboard."

She can't see it. It's not an eyesight problem, her sight is bad, but she can see a can of cat food. She could also reach out and feel for it, but she won't do that. She won't try. In her mind, I am trying to kill the cat by starving it to death.

If I'm not working, I go over there and feed the cat. But if I am at work and she can't or won't try and find today's cat food, there is nothing I can do to stop her going to the shops and getting more, then opening all the cans she has bought in one day.

I really don't know what I am going to do about this. It would be better if I brought the cat to my house, but she would be too upset.

If anyone has suggestions I'd appreciate hearing them.

The neighbour says I'm imagining it

I feel so annoyed and frustrated with people who've never dealt with dementia. This week has been a nightmare. Due to a badly leaking tap washer that had to be ordered and takes five days to get here from Melbourne, I've had to go and turn on the water in the mornings for Mum to have a shower, then turn it right off again, or all the hot water would run down the drain and the cost would be terrible.

I found someone to fix the washer, but the neighbour doesn't approve of the man. He spoke to my mother while I was at work and convinced her not to let him into the house. My mother agreed because she'll agree to anything someone else suggests. This neighbour plans to ring a plumber for Mum. That will cost around $200. I'm trying to sort the matter out.

I said to the neighbour, "My daughter has Power of Attorney and she makes all decisions on maintenance and money, and I have Guardianship so I make the decisions on Mum's care."

The neighbour replied, "There's nothing wrong with your mother. She comes up here to visit us and talks to us perfectly normally. She knows why the water is off at her house, she understands it's the tap washer. You and your daughter don't have the right to make her decisions. She can make her own decisions."

What can you say to someone like that! Every day, I get dozens of calls from Mum. "I haven't got any water." "I need to ring the Water Board, my taps are not working." "Everything is broken in my house, the toilet is broken, the taps in the laundry and the kitchen are all broken." "I need to call a plumber and get all my taps fixed."

The information, "The tap washer is broken. It's a special one that's been ordered and will soon be fixed" does not stay in her head for more than 30 seconds.

When the neighbour spoke to Mum, he would have said, "Your tap washer is broken" and she would have replied "Yes, I know that's why the water has to be turned off", because the neighbour had reminded her of what was wrong. If he'd asked her 2 minutes later, "Why is the water off at your house?" she would not have had a clue. She can only respond sensibly to such questions if the questioner has either given her the correct answer or given her enough hints so she can respond with the correct answer.

Those who have had to deal with someone who has Alzheimers will know exactly what I mean. They can present such a good front to others, they can have good conversations and not get confused depending on what subject is being discussed, they are experts at avoiding subjects they know will trip them up.

And they make it look as if you, the carer, are just trying to get a perfectly well elderly person into a nursing home for your own advantage.

Outsiders have NO idea what is going on.

Attacked over cat food

What a horrible day. I left Mum at the doctor's at 8.00 so I could go to work and she could get the bandage on her leg changed. The doctor is situated in the Westfield Shopping Mall.

I knew she would probably buy unnecessary cat food while she was at the shops. I wasn't worried as I just hide it once I get to her house and put out only the cat food for that day to save wastage and attacks of paranoia resulting in six full bowls of cat food appearing in various parts of the house. Then she chocks open all the doors with chairs in case an earthquake happens and the cat is trapped somewhere that it can't get to its food.

When I got back from work sure enough, she had bought more dry food. We have the Science Diet from the vet and the vet has told her twice not to feed any other types of food with it to ensure a balanced diet. So I've been putting the Science Diet into plastic containers labelled with the day of the week. That has been going all right for a few days.

So I got rid of all the excess bowls of dry food (about five bowls full to the brim) and then had a look in the fridge. In the fridge there were SIX CANS OF EXCLUSIVE-BRAND TINY TINS OF GOURMET CAT FOOD WHICH ARE $1.90 EACH and each can had had one teaspoon of cat food removed from it, then wrapped in a sandwich bag and placed in the fridge. SIX CANS IN ONE DAY. Thats $11 or more depending on where she bought the gourmet cans. When the cat wouldn't eat a teaspoon of the food, she's opened another can, then another, then another because she gets this idea into her head that THE POOR CAT IS STARVING and she HAS TO FIND A WAY TO ENCOURAGE IT TO EAT, so if it doesn't eat the first flavour, she opens another one. It's just another type of paranoia.

So I got all the cans out of the fridge and asked Mum to sit down at the table and we would talk about cat food. I put all the cans in front of her and I said, "You have opened six cans of cat food today which you bought down at the shops this morning. This is wasteful because in a couple of days they would have to be thrown out. This is why you have to let me look after the cat food and organize the feeding of the cats." (it was CAT, but she has stolen a neighbour's cat by enticing him with gourmet cat food. The cat's owner was very angry at first but she's just given up the fight to keep her cat and no longer worries about it).

I reminded her that the vet said not to give the cats any other type of food apart from Science Diet. I reminded her that we don't need tins of cat food any more because we have SCIENCE DIET FROM THE VET and we are following the VET'S INSTRUCTIONS.

I said all this very calmly and SLOWLY as people with dementia don't like others saying or doing anything quickly. Then I said, "I will take these wasted cans of cat food home to my cats to get rid of them."

At that point, she jumped up, an evil, angry look on her face and grabbed at my face and at the bag I was holding with her fingernails. She screamed "You are not taking my cat food off me! Get out of here! I hate you!"

Well, I have had ENOUGH of her today, ABSOLUTELY ENOUGH.

I do NOT want her living on my premises even if in a granny flat. I could not put up with this kind of thing. It is as bad as living with some poor person who has schizophrenia. In fact, the similarities between the two diseases are so obvious I'm surprised no-one has remarked about it in the past and no research is being done into whether the two conditions are linked.

I grabbed the cat food anyway and made for the door. As I was leaving, she got all maudlin. She said, "Give me a hug." I stepped aside and avoided it.

No, I am not hugging you. I don't know who you are. You are not my mother. You are a horrible, nasty, violent, insane person who has taken over my mother's soul.

Feeling very alone

Over a year ago, when Mum started to get noticeably worse and need me to be at her house for hours every day, my brother was still in occasional contact with her.

He's never bothered with her much. He doesn't send her a card on her birthday, mothers' day or Christmas. He doesn't ring her up. She has always had to ring him. I don't know what his problem is with her, although he did admit once that during his child custody case, he didn't like the evidence Mum gave that my former sister in law was not a bad mother. Mum said she'd never kick someone when they're down and my sister in law had been suffering from a nervous condition.

So Mum got worse and she would tell my brother conflicting things on the phone. He took this to be 'lying' and began to dislike her. I think he decided she was turning into a 'liar' in her old age. For example, I was there once sitting in the lounge room as Mum was talking to him. He asked her if I was there. She said no. Then, a minute later, she called out to ask me something. He said, "Stop lying Mum, she is there," and hung up on her. She just hadn't remembered that I was in the house.

I have never understood why my brother won't talk to me. I don't recall ever having done anything wrong. I would take Mum to his house several hundred kms away 5-10 times every year so she could visit him, but he'd never say a word to me. I learnt to live with it.

In December Mum suffered a blackout on a plane coming home. She was taken to hospital in Sydney. She wasn't conscious. I thought she was dying. I called my brother and asked him to come. I even offered to transfer money for petrol to him so he could afford to drive the four hours to Sydney.

My brother phoned the hospital to inquire about her and they put Mum on the phone. She was by then conscious again. It's thought she suffered a seizure, something that's common in people with dementia. He asked her how she was. She said she was fine. She said, "I'm going home now, the doctor is discharging me. Don't worry, there's nothing wrong with me." He asked if she'd been unconscious. She said no. She had no idea where she was or what was happening so nothing she said was true, but he believed it.

He got his daughter to drive to Sydney instead with a view to taking Mum away from me permanently, since I was making up stories about her being sick when she wasn't. By the time she got there, Mum was sitting up in bed drinking tea. She'd been hallucinating though, and nurses had found her wandering in a corridor as she'd got lost, but my niece didn't know this.

Mum was released from hospital the next day and my niece told me she'd take Mum to my brother's place for a couple of days' break. I found this a bit unusual as he hadn't wanted her staying there ever before, but I wasn't suspicious. I let her go, though she was reluctant, not wanting to leave her cat.

As soon as she got to my brother's place, all contact with me was cut off. My niece, when I rang to inquire about Mum, said, "You are a liar and I'm not talking to you ever again." My brother and his de facto wife just hung up the phone on me as soon as they answered. I didn't know what the hell was going on.

Over the next few days I spoke to Mum quite a few times on her mobile phone. She can still use it, which is great. I have programmed it so that she only has to press down number 3 to get me, or 2 to get my daughter, or 4 for my son.

Mum had been taken to the bank to inquire how much money was in there and to get statements. As soon as I heard this, I went online to her account and transferred $3000 to another of her accounts, inaccessible by keycard, for safety. Sure enough, my de facto sister in law tried to withdraw that money, then sent me an angry email when she couldn't get the money out. She said she needed that money for Mum's 'board and lodgings'. She said I had 'stolen' the $3000.

My niece wrote on Facebook, for all my friends and other family members to see, that I was a liar and a thief and had taken $3000 from my mother.

Next Mum told me she was being taken for a brain scan. I rang my brother again to find out why. He hung up on me.

Mum couldn't remember why she was having a brain scan, so it was no use asking her. I was very alarmed by this time. She was being financially abused and taken for unnecessary tests and doctors' appointments. She said to me over and over, "I just want to go home to my house and my cat. Please come and get me."

Emails to my brother's house asking when I could collect her got no response.

I discussed the problem with several family members and Mum's friends and they all said I must drive to my brother's country town, go to the local police and ask them to help me get her back.

So this is what happened. I got Mum back home. She was very glad to be home.

I thought that would be the end of it, as my brother had no interest in Mum and had barely ever lifted a finger to help her with anything.

But he turned up at her house unannounced a few days later with his de facto wife. I had arrived to do my day's work at Mum's place and he was there. He was shouting and being nasty, telling her I was after her money and telling people lies that she had dementia. I asked him to leave. I said, "I have Guardianship and I won't have you talking to Mum like this. I want you to go."

He then assaulted me and left. I called the police and an Apprehend Violence Order was issued. What a terrible way for things to turn out. I had hoped for help from my brother with Mum's problems and this is what happened.

My brother notified police he would not accept the AVO and would contest it in court. So this happened on Monday.

It was terrible. I had to give evidence. I didn't tell lies, but they did. They had got together and concocted various stories. The magistrate saw no reason for an AVO since my brother stated in court, "I have hated my sister for 30 years and I never want to see her again, so I won't be any problem to her in the future." The magistrate accepted this.

How horrible to hear in court that your brother has hated you for 30 years.

He also said that I was telling lies that Mum has dementia. He said he had taken her to his doctor, who tested her and found no sign of dementia. He'd then got a brain scan done, which showed no sign of a problem. He told the court I was inventing the dementia in order to get control of Mum's assets.

My de facto sister in law stated I stole $3000 from Mum. The magistrate said he was going to ignore that evidence as he was not in any position to make a decision on what happened to the $3000.

They both said terrible things about me. They told dreadful lies. I didn't care that there's no longer an AVO, but I didn't like hearing those things said.

So now I am on my own. I do have my 22 year old son living with me, so that's a bit of a help. My daughter is too far away to help.

I have lost my eldest niece, I will never see my brother again (probably a good thing) and I am on my own as far as caring for Mum.

I don't understand why any of this happened. Why would my brother disbelieve me when I said Mum has problems with her memory and behaviour? I know she always managed to pull herself together and act normally in his presence.

I think he knows something is wrong and he doesn't want anything to do with the situation. He doesn't want to see Mum go downhill and so he's made up a reason never to see her or me again. He has not contacted her in six months and has changed his phone numbers so she can't ring him.

She cries all the time about it. Her grand daughter hates her too and calls her a liar as well as me. Mum has a great grandchild on the way that she will never see.

I have heard these kinds of things happen in many families after a person has been found to have dementia.

The magistrate was good in his summing up of the case. He began by saying positive things about me. He said, "It is plain to see that the defendant's mother is in need of assistance. In my experience, when an elderly person suffers from dementia, the burden is placed on the shoulders of one person, and in this case that person is the defendant's sister. It is clear to me that the defendant has done nothing for his mother in recent years."

He said other things, too, that supported me, but at the end he said that since my brother hates me and will never see me again and never intends to visit the town to visit his mother either, there is no point in having an Apprehend Violence Order.

The Cat Food Battle

The battle of the Cat Food continues. Yesterday Mum walked down to the mall by herself before I got to her house. She admitted to me that she had terrible trouble finding her way out (she says this is because of her bad eyesight but I know it's more than that) and had to walk round and round looking for the exit.

So, at the mall she went to Coles and bought about 20 of those little expensive gourmet tins of cat food at $1.80 each. She also bought another cat food dish - she has 7 or 8 now.

When I arrived at her house, the old problem had happened again. I found several tins half-opened and left in the cupboard to go bad. I found two plates - not cat food plates but parts of her dinner set - full of cat food and 'hidden' by saucers on top so I couldn't find them, in the fridge. And about 4 plates of cat food on the floor in various parts of the house.

All up about 9 tins of cat food had been wasted (the cat was not hungry as I fed her a few hours before) at a cost of $16. I can't allow this waste of money to continue so I said to her, "Mum, you have tins of cat food EVERYWHERE. You have to let me take care of the cat food!"

I always say things I wish I hadn't. She didn't know there were tins of cat food and plates of cat food all over the place. She denied this and said I was making it up to make her look 'mad'. She shouted and ranted about my efforts to kill the cat by starvation because I hate the cat.

I have three cats, all shiny and well fed - but not fat.

There were a lot of nasty words said as I disposed of the excess cat food and hid the tins that were left when she wasn't looking.

Then I put two tins on the kitchen cupboard, one labelled 'WEDNESDAY' and the other 'THURSDAY', but I know I'm wasting my time, by later today she'll have opened both of them and put them on the floor, probably on plates she expects people to eat from.

I should have taken the two nice dinner sets to my house and hidden them months ago. I cannot offer them to family members now, once she has gone to her rest. I don't know which plates the cat has eaten off. I will probably just throw the dinner sets out one day. Am I being over-fussy?

Mum dies for 15 minutes on operating table

Dramatic developments the past few weeks. The surgeon was going to remove her pre-cancerous adenomatous polyp. The anaesthetist misjudged the amount of anaesthetic to give her and her heart stopped. It took 9 electric shocks to re-start her heart. She was in a coma on life support. The family came to say goodbye. I took out her pre-planned funeral booklet and started to think of arrangements.

But next morning, at 10 a.m., just as my daughter arrived from interstate. she woke up and asked for a cup of tea!

I have mixed feelings about this. I think if it were me, I'd only want to die once; I wouldn't have wanted to be resuscitated at the age of 83. But then, Mum does not know she has dementia. She thinks I am the one who is crazy and keeps making mistakes. I asked her if she wanted to be resuscitated if her heart stopped again and she said yes, it's good to be alive. So I should be glad that she wants to be here. But hey, God, what are you doing here? You sent her back to suffer more?

My cousin said to me, "God's timing is always right." For all the nice atheists out there, I apologize for this venture into the spiritual world. I'm sure you have your way of looking at things too. But this is how I look at it. So, I am trying to accept that she was sent back for a reason, that there is more work for her to do here, OR MAYBE I HAVEN'T BEEN PUNISHED ENOUGH!!!??

So, she was in hospital under close observation for a week. They could find nothing wrong with her heart. It wasn't a heart attack.

The surgeon and anaesthetist apologized. I won't be suing, that's for sure. It was good to get an apology for this horrible mistake.

The surgeon said he'd give her two months to think whether she'd like to try again. So we got a few opinions. Most opinions were that dying of bowel cancer is a very nasty way to die and even though the operation might kill her (again), that is a better way to go.

Meanwhile she had an operation for a large skin cancer on her leg. The surgeon had to cut about half an inch down. She had skin grafts. It has been painful and there's been a lot of suffering associated with it. She's still in pain and has to sleep at my place. I take her home to her house in the day time. I have to take her to the local doctor every day so the nurse can change the dressing. My workload has multiplied. I have very little time to myself now. I have to do everything for Mum. When she showers, we have to wrap the leg in plastic and make sure we don't get it wet. Goo runs down into her sock and so socks need changing several times a day and soaking in bleach. It is horrible.

I am trying to take over feeding the cat. She is resisting. I just can't take any more of her forgetting if she's fed it or not and trying to feed it six times a day at least and leaving several plates heaped high with dry cat food througout the house. There have been arguments: she says I'm trying to starve the cat to death because I don't like it. She says I'm a bully and I'm a cat-killing cat-hater. But I'm being stubborn and sticking to my plan. One plate of dry food and one small tin of food each day - no more.

God it is hard.