Hallucinations

[nightowl]

The consultant visited and said there is no cure, only medications that ease the hallucinations but the medications come with side effects. That said, I would like to share what has been happening. After reading this - my real question is, does anyone know what drug might be offered in the future and what the side effects might be, please?

Probably about last September, mum came to my room to tell me that my 24 year old daughter was fast asleep on her computer chair (which had transformed into a bed, at the same time, what mum was seeing was all blue. This happened on and off occasionally, with stray cats, dogs, girls, boys all coming and going. Consultant said that whilst these hallucinations were not distressing it was best to do nothing (to avoid side effects of medicines).

Gradually they have got worse. This week was particularly bad culminating at 6.00pm yesterday afternoon when she was watching Eggheads on TV. She came through to say that I had to come and see them all because there were so many of them and it would be awful if they all left at once.

Apparently, in mum's eyes, there were three people sitting on the computer chair, three on her armchair, many on her bed, some on the computer table and others just standing in what space was left. They were all talking amongst themselves, discussing the rights and wrongs of the contestants answers on Eggheads.

Until yesterday I had always been able to make these people go away, by gently moving a cushion, or sitting on a chair, and mum would b amazed that they had gone and would gradually accept that they were the "blue people" that she had discussed with the consultat. But yesterday nothing worked. It wasn't that she couldn't understand why I couldn't see them, (we never got to that stage), it was that she couldn't understand why I was trying to stand in the middle of them when there was no room to do so. Eventually she got very distressed and put on her coat to leave the house.

She never did leave the house. I played the "stay calm" game and after a couple of hours she finally took off her coat and had a little tea. The people seemed to go of their own accord. She does understand that they could not have been real, she came to that conclusion herself, but that leads, of course, to the understanding that she is going mad. Her thoughts, not what anyone would say to her. At bedtime she asked where my daughter was. I said she had just, just, gone to bed. Apparently she had been asleep in mother's room again.

As I say, I thought I would share this with you. I just have to handle it as best I can.

Nightowl

 

[Rachel T]

Nightowl, I have no advise, but reading your thread I just wanted to reply to let you know you are not alone and that I and I am sure many others know what you are going through.

My mum had hallucaintions simular to your mum. My mum was in a care home and she was always telling me that there were people in her room, that they would sleep in her bed and sit in her chair. They were sometimes children but often they were men with deformed faces, she also saw animals. It was always at night time when we weren't there so we couldn't do anything to calm her. As she got worse she had them in the day time, she would point to empty spaces and say someone was there. She was very frightened.

Her GP did put her on medication to calm her, I am afraid I don't know what it was called, I was never told and too stressed to think about asking. It did help with the hallucaintions, she still had them but not so often or as bad.

As for side affects, I am not sure, she was so poorly and getting worse every day it was hard to say what caused what.

I do hope you can get help for your mum soon, it's so frightening for the sufferer, and painful for us to watch.
I wish you all the very best. Rachel

 

[Jo1958]

Nightowl, hi
As Rachel says you are certainly not on yor own with this one, we have the same here.

Hubby has terrible trouble at night, at the moment it's spiders and mice but other crawlies are also around, they fall on him and are all over the bed, in the bedding and under his pillows, he is very disturbed by them. There are people around too and it's always worse when there is someone using the toilet when he needs to go, sometimes they break the toilet and he can't use it. We try lights on, lights off, I go with him to the toilet and that usually makes things easier because we are talking as we go. It leads to very disturbed sleep which I think doesn't help. At the moment he doesn't want any medication because of the side effects that they could cause so I have no experience to pass on, sorry.

Keep trying to find what works for your mum, I hope you all get some rest from this upsetting part of the disease soon.
Take good care of yourself, with kind regards from Jo

 

[nightowl]

Thanks, both! It is always reassuring to know that this is not so unusual. It is a strain though on the rest of the family and eventually decisions will have to be made But, in the short term, we shall just see how we get on. I'll talk to the doctor, I ahve a telephone consultation booked for tomorrw, and see what he knows about the drug, but I'm not hopeful as he had never heard of anyone having hallucinations like these before.

Thanks again (ps, she does see mice running along the bed, but not spiders, fortunately)

Nightowl

 

[parkerdart]

Hi Nightowl-

I have vascular dementia and I also do see things. I am on risperdal but you need to being careful about these kind of meds. because side issues can be very bad and need to weight that out. I say I have more good days than bad still but my son says my good days only seem good because I am comparing them to my bad days. Maybe he is right but they seem good to me so oh well. Even on good days I sometimes see things (for me mainly mean, wild, very vicious animals). On those days they are still scary but I can get my head around fact that they are because my brain is doing strange things. On the bad days though, that is different. Was put on meds. because Dr. afraid my fear could cause yet another stroke or I could run away from them and get hurt. I know there are being pros and cons to these kind of drugs but just want to say again, please research to be sure they will do more good than harm. Take good care and I am sorry your family and your Mom is having to go through this. Have a Blessed Day. Love, Vickie

 

[Rachel T]

I am suprised the doctor hasn't heard of these type of hallucinations, I thought it was quite common. My mum also used to see mice and spiders.

I wrote a tread a few months ago when my mum first became ill about her hallucinations and I had so many replies form other TP users who were experiencing the same thing.

I'm sure over the next few day's you will get replies from TP user's out there who can give you some good advise.

 

[Jo1958]

Nightowl, hi
Good that you have a telephone appointment tomorrow, I hope you get the information you need. I'll be interested to know how it goes and how you are feeling about it all.
Take good care of yourself, with best wishes from Jo

 

[shelagh]

Ihave a wonderful array of insects and mice that visit mee. I'm still able to know they are not real although they are very very distinct. I can usually distract myself, mking a drink, coming into the lap top. It's not easy when I think there are people outside - because of course there may be. the upsetting thing is when I go to let someone in or to tell Paul there is someone there and then there isn't. This isn't helpful really except to say that it masy upset you more than the person hallucinating. We just get jues to it.
Shelagh

 

[nightowl]

Gosh, more very helpful and very interesting replies. I had never thought of "people outside" as being the same thing. All last summer (before the first visual hallucination that I know of)mum complained that the four girls who lived across the road were constantly standing under her window going "ssss..ssss.ssss". Of course, there was never anyone there.I see it's possibly the same thing, just like a bit further back in time when she had a bedroom upstairs, and a cat jumped off her bed. We've never found that cat!

And thanks for the name of a possible drug - reserpidol - I'll check that one.

Nightowl

 

[BeckyJan]

Hello Nightowl:
I am sorry about your Mum and understand how disturbing it is for both of you.

My husband also hallucinates but as he is bedridden and fairly calm about them I can just play act along with him.

This factsheet may give you additional information:
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=172

 

[Souffle]

Hi Nightowl

Mum had a man who used to come into her lounge and try and buy her china cabinet. She said he was scruffy and rough. Trouble is I believed her at first (it was summer and her patio door was open) and was worried sick. then I realised he kept coming back and nothing had happened! She also suffered with musical hallucinations - a full brass band playing in her head all night! These seem to have stopped lately, but she now has an imaginary friend she talks to most of the time, and has a right laugh with! She also argues with them. She seems to get it mostly in the evenings, when she can get quite "high" whereas in the mornings she is very quiet and withdrawn. Suppose it can only get worse!

 

[nightowl]

Looking at these hallucinations objectively, it is very interesting. Firstly mum has not mentioned anything tonight but I can see that familiar look on her face that means that she can she these people, but no way is she going to tell me because I won't believe her.

Mice, cats, dogs, girls reading books, little boys playing on the floor, and a tall man, over 7' tall have all been around for at least six months now, maybe a lot more, and they are in one category of her hallucinations. I@m often with her when she sees them and they don't worry her, she just looks at them (except the mice) and smiles lovingly at them, they seem to be rather cute and a little bit sad. There is nothing in her history to make her react in a certain way (no infant deaths or anything), she just does.

This second category of sightings is different.Just before Christmas she hurt her knee and we had to move her bed downstairs. Her knee was very painful. That was when things got worse. These are real people. At first it was generally my daughter and sort-of-son-in-law who would be sleeping on her computer chair, she would creep out to tell me, not wanting to wake them up. When I moved the cushions off that chair, the people would disappear. The first time it happened the whole room turned blue. At that time I had to get carers in, just in the mornings. Sometime last month the people became more numerous and more varied. When I was out at work one afternoon, two carers came and sat in her two chairs (she had her feet up on the bed), they read through their notes for an hour, but they never said anything and they never talked to mum. A few nights ago I walked into her room about 9.00pm and she said, with total belief, "look who's parked herself here, then!". There was a lady sitting on the chair next to her, also a man sitting on the ocmputer chair. The lady, she said, would not move, and she had her hand on mum's knee. Mum lifted up this lady's hand and said to me "look!" - but it was mum's own hand, it just didn't belong to mum at that time. She had been having problems with her feet, too, when I took her slippers off at nighttime. On top of all this, mum has very little speech, so it is really difficult, sometimes, to understand what she is saying. Then of course, there was last night, with so many people in her room.

Mum's history is that she began to lose the names of things over ten years ago and eventually persuaded the doctors to investigate. A scan was done and a benign brain tumour was found. This was removed, I think it was about 2000. At the same time her breathing problems became more noticeable and she has access to oxygen whenever she needs it.

I hope that you don't mind me writing at such length. After a while I thought I would continue because she has just had an appointment to go for another brain scan, and I can print out just my contributions to this thread for when we see her neurologist a few weeks later.

Nightowl

 

[Gill66]

My Mum has regular visitors. Some during the day, which don't seem to worry her as such. It's the men breaking in at night that she finds distressing. I actually spent several nights sitting outside her flat (without her knowledge) just to satisfy myself that there was nobody there!!!! We 'changed' her lock and key and for a while the men disappeared. Unfortunately they have returned and she is now barricading herself in the lounge every night - she won't even consider going to bed.

 

[LMN]

My husband has them on a daily basis. He has been having a 'patch', called Exelon 9.7 mg. It helps the hallucinations, to the extent that they are not as violent.I do not know if exists in UK, we are in France.
An example, he was in bed asleep, bars on the side of the bed, and he woke and thought that the bed was a boat, and he had to jump, because the boat was sinking. End of this story is that somehow, he worked his way over the bars, fell flat on the top of his head, and was rushed from the Nursing home to hospital for a brain scan. He had 16 stitches. By the time, some hours later, he was back in his bed, he had totally forgotten the whole episode.
Since then he has fallen agaisnst a table, and broke his upper false teeth, and looked like a hamster for a few days. 3 weeks ago he broke his nose.
No blame can be put on the staff, my husband has his own room, and whilst he can barely walk, he does from time to time get up and wobble around.
The day will come, I fear, when restraint will have to be used. However, I and his doctors prefer to take the chance. He has physio every day, some times it seems to help.

 

[gard639]

What a relief to know that these hallucinations are not uncommon. My husband has Parkinsons Dementia, and his hallucinations are constant now. They have been on and off for over 4 years, and within the last 6 months it has got much worse. He sees the same ones that everyone has been speaking about, 7 feet men, little boys, plumbers doing work in the toliets, spiders and mice everywhere, faces distorted, men moving a large cupboard, people outside the window and it is always raining and the flat is full of water, all very similar, which is puzzling. Our neurologist reduced his PD meds thinking it would help, it hasn't, we tried Exelon which did not agree with him at all, and now they want him to try aricept. I am not keen but we need to try something. The worst part is that he 'goes in and out' of recognising me throughout the day. He calls me a different name at times and wants to know where his wife is. He doesn't want to be left in a room and follows me everywhere. It is very emotionally draining, but I am trying to be strong and continue with the compassionate communication.

 

[nightowl]

Thankyou again for the latest replies, my knowledge and understanding of this condition is increasing via this forum and it helps a lot. I also discover that things that I had not previously associated with it do seem to be related.

Gard639 you specifically mentioned plumbers - for the last week mum keeps on asking if its OK to go into her bathroom - have the men gone, yet? And the night before last she was in my living room when a spot of water fell on her leg. There was no water, no leak, but a week ago, when we had the heavy rain, she was convinved that the rain was coming in through the ceiling of her extension - it took a lot of convincing that her room was the newest in the house and the least likely to flood, but she said that she had been up all night, on her hands and knees on the carpet, feeling for the damp bits.

Also, on really bad days, I am accused of moving the house. It used to be on the other corner of the street.

I'm thankful that you are sharing your experiences, and so pleased, Gard639, that this thread describes what your husband is experiencing. It doesn't change anything, but at least it all sounds more "normal".

 

[Onlyme]

Hi Nightowl

What colour is your Mum's carpet? When Mum can see and hear rain she thinks that the blue carpet is a river and that her room is flooded. Nothing will comfort her and she remembers that it 'flooded' for days afterwards. Its strange that this false memory sticks when she often can't remember anything else.

 

[nightowl]

Mmm. Mum's choice of carpet colour was a deep burgundy - and she was crawling around in the dark (there is always some light from her bathroom light which is always left on). It was only two nights ago, when a splash of water landed on her leg in my room that it dawned on me that these water related things are another form of hallucination, until then they had always seemed quite plausible.