Help with hallucinations

[Macduff]

My wife (PWD) is suffering from hallucinations. i believe this is a legacy from a bad experience at a care home earlier this year. Every day she says 'they' are waiting for me and will get me as soon as I (me) go out, even into the garden. Also everything that goes wrong is 'their' fault. For example an accident in the loo is because these people, mainly women, made her do it. They stick her head down the toilet and threaten her. Apparently they are always telling her 'we're going to get you'. In a rare moment of calmness she admitted she is always scared. I have given this feedback to the wonderful caring people at 'Living with dementia' and they say it is possible to control hallucinations so she is not scared. An appointment with a specialist doctor has been made.

Meanwhile may I ask if anyone has had experienced this, what did they do to manage it and can anyone offer any advice or guidance?

Many thanks.

 

[MrCanuck]

My mom suffered from paranoia and often would talk about a "he" or a "him" that would be after her, ready to kill her. There were somewhat detailed backstories to "him" such as "he" kept coffins in the basement and had many shading business dealings etc. Many times she was convinced that "he" would be going to get her that night and my mom would write me a goodbye letter which brought tears to my eyes. Sometimes "he" had a wife or sisters and "they" would be going to get her.

At first I thought maybe "he" was an actual person that my mom might have been afraid of but I was never able to get any kind of description. Early on "he" was a doctor and later "he" become the owner of the house she was staying in (which was actually a care home). In the end I came believe "he" was some kind of construct her (damaged) brain had created. She could not understand what was going on around her or to her, but she could understand the concept of a "bad person", and so her confusion manifested as as "him".

I found confronting my mom about this, which I did at first, completely the wrong thing to do. I tried to explain there was no one after her, she was safe, I'd make sure she was safe etc but this just upset her even more. She fully believed in "him" and it seemed like I was dismissing her (legitimate to her) fears so it just made matters worse (oh boy did it make it worse!).

In some cases, it is often better to just agree with whatever the PWD says, but that doesn't work if they are claiming someone is going to kill them, so it puts you in between a rock and a hard place. Eventually my strategy was to just let her talk out her fears to me but I would be very neutral in my responses. I would show that I was listening to her seriously but wouldn't agree or disagree. A lot of "oh yes" and "OK, I see". After talking awhile her fears would peter out a bit and I could try to swoop in with a distraction like "let's watch a dog video".

This phase lasted about a year or so and "he" came into the picture more often when she was stressed or ill. Eventually "he" mercifully disappeared.

 

[Macduff]

My mom suffered from paranoia and often would talk about a "he" or a "him" that would be after her, ready to kill her. There were somewhat detailed backstories to "him" such as "he" kept coffins in the basement and had many shading business dealings etc. Many times she was convinced that "he" would be going to get her that night and my mom would write me a goodbye letter which brought tears to my eyes. Sometimes "he" had a wife or sisters and "they" would be going to get her.

At first I thought maybe "he" was an actual person that my mom might have been afraid of but I was never able to get any kind of description. Early on "he" was a doctor and later "he" become the owner of the house she was staying in (which was actually a care home). In the end I came believe "he" was some kind of construct her (damaged) brain had created. She could not understand what was going on around her or to her, but she could understand the concept of a "bad person", and so her confusion manifested as as "him".

I found confronting my mom about this, which I did at first, completely the wrong thing to do. I tried to explain there was no one after her, she was safe, I'd make sure she was safe etc but this just upset her even more. She fully believed in "him" and it seemed like I was dismissing her (legitimate to her) fears so it just made matters worse (oh boy did it make it worse!).

In some cases, it is often better to just agree with whatever the PWD says, but that doesn't work if they are claiming someone is going to kill them, so it puts you in between a rock and a hard place. Eventually my strategy was to just let her talk out her fears to me but I would be very neutral in my responses. I would show that I was listening to her seriously but wouldn't agree or disagree. A lot of "oh yes" and "OK, I see". After talking awhile her fears would peter out a bit and I could try to swoop in with a distraction like "let's watch a dog video".

This phase lasted about a year or so and "he" came into the picture more often when she was stressed or ill. Eventually "he" mercifully disappeared.

 

[Macduff]

Thank you so much MrCanuck. I don't feel so alone now. Yep, trying to dispel or dismiss the fear doesn't help and I have given up on that approach. Hoping to get some medication that will make this disappear.

 

[MrCanuck]

I forgot to mention that my mom did go on Trazodone. This helped to calm her agitation and when she was less stressed the paranoia decreased and was easier to distract.

 

[LadyA]

Hi @Macduff . Paranoia and hallucinations were also a very prominent feature of my husband's illness. It was very extreme, and he was living in terror, day and night. Things came to a head when, twice in one week, I found him hiding outside my daughter's bedroom door with lethally sharp items (kitchen shears the first time, barbeque fork the second time) hidden under his jacket! He was waiting for the evil men who lived in the room and tortured my daughter, pouring acid in her eyes, and (literally) killing her, every night - and he was going to kill them as soon as they opened the door! At that stage, he was put on anti psychotics and relaxants, and although it took a while to find the right medication/dose, once the doctor found what suited him best, it literally switched his terrors and hallucinations off.

Paranoia and hallucinations are actually much more common symptoms of dementia than you'd think. ItsI one of the things you generally won't hear about until you encounter it!

 

[JJwren]

Hi there, not sure my hubby’s hallucinating will help but hallucinations began about 4 years ago. Two and a half years before his diagnosis in January this year he was found clear if Alzheimer’s and the hallucinations were attributed to Bonnet’s syndrome which affects the blind or partially sighted, hubby is registered blind.

As of a few weeks ago hubby’s hallucinations have returned but they do not scare him, in fact he chats away to persons unseen in a very lucid way. However! He does seem troubled by disturbing dreams and keeps falling out of bed. Not sure if these things are linked. A touch will usually settle him but getting him back into bed can be difficult.

 

[LynneMcV]

Hallucinations and paranoia were also a part of my husband's dementia.

The symptoms came in spates, rather than being something always present. They ranged from mild episodes which I could divert him from by simply acknowledging what he was saying and then distracting him (repeatedly) - to more intense ones which saw me fitting locks to certain rooms in order to keep the family safe -- as well as hiding sharp things from sight.

An anti-depressant called sertraline was enough to alleviate my husband 's anxiety and get us through the milder events, but eventually an anti-psychotic called quetiapine was prescribed, which helped him a great deal with the more intense episodes as the disease progressed.

 

[Platinum]

Hallucinations prompted my OH to call the emergency services. I have posted elsewhere how this resulted in a placement in a residential home. It’s is early days but currently I am paying on a weekly basis as his first night was pretty eventful and he pulled out his catheter. He was transferred by ambulance from hospital but instead of arriving at midday he was delayed until 1745. I was told all his meds would be ready the previous afternoon and he would be in the transport queue early on discharge. Instead he had spent all day on the ward, with an HCA watching him, and was therefore very upset and aggressive on arrival. So mitigating circumstances but the manager of the residential home was cautious about length of stay. He is being given Lorazepam, I have no idea how much but it certainly calms his agitation. On one visit he had refused meds and the difference is obvious but he will let me help with washing and catheter etc although he is very vocal about getting out of prison.

He is now in his 2nd week and I am finding it hard. Obviously it is early days but the one week at a time is makes it all rather uncertain. Also the medication is a bit of a worry. OH is ok and engages with the staff, but he is either on his rollator, pacing, or parks himself outside the manager’s door with a firm view of the exit. They have said I should not visit too much. I am living in his house and it’s very strange without him although I must remember how difficult things had become and we were in crisis at times.

I will talk to the manager about the weekly payments but does anyone have advice about medication in residential care? When he was at home the GP reluctantly gave 14 tabs . Lorazepam and advised giving a half tab in periods of agitation only. Everyone says he will settle down but there must be some that don’t . And then what?

Many thanks for any advice

 

[BLONDY]

My wife (PWD) is suffering from hallucinations. i believe this is a legacy from a bad experience at a care home earlier this year. Every day she says 'they' are waiting for me and will get me as soon as I (me) go out, even into the garden. Also everything that goes wrong is 'their' fault. For example an accident in the loo is because these people, mainly women, made her do it. They stick her head down the toilet and threaten her. Apparently they are always telling her 'we're going to get you'. In a rare moment of calmness she admitted she is always scared. I have given this feedback to the wonderful caring people at 'Living with dementia' and they say it is possible to control hallucinations so she is not scared. An appointment with a specialist doctor has been made.

Meanwhile may I ask if anyone has had experienced this, what did they do to manage it and can anyone offer any advice or guidance?

Many thanks.

My Mother suffered from Hallucinations, which manifested in many different ways. I would calmly explain that In fact she had nodded off for a while and dreamed of horrors. Other times I would sit her down with a warm drink and calmly explain that as real as this seemed to her, it was imaginary because she was not very well. I would say, do you remember, when I was little and had hallucinations with a high temperature. Then I would promise her there was nothing to be afraid of and if all else failed shout out ****** off to your tormentor. All the aforementioned worked for my mum. Humour and compassion helps.

 

[Teddybear12]

my mother suffered hallucinations towards the end of her life but i feel that was a UTI that created that.

 

[shaktibhakti]

my mother had been hallucinating past 6months & went into a carehome 3 weeks ago. when i stayed three nights before she we took her in she lept out of bed and pannicked saying the man wont want me sleeping in my bedroom ...peeled back the bedsheets and said quick get in with me...she went to the door, put the chain on [something that the carers said had happened twice before & once with me! as they couldnt get in until she came to take it off....intreasting,,ive never seen her like this but i was trying to tell her the 8yr old she was seeing on the balcony might not exist...mistake so i think thats why she became agitated later. shes not currently on any drugs for the alszeimers...her freind who was diagnosed two years earlier is and suffers from the worst headaches & has to go to bed often! She seemed to be awake even when i went to the toilet at 1am, ....consequently i didnt sleep well that night either! eventually i closed her bedroom door late morning....Previous week id called the doctor in & her sociol worker as i told them it was getting increasingly unsafe for her to be there, gp tested her urine and phoned to say it was clear & after conversation said she would support my decision taking her to a carehome!

 

[lemon tart]

My mum suffered with hallucinations prior to her dementia diagnosis and throughout her illness. In the beginning she was genuinely terrified that someone was in her kitchen or on her roof coming to get her. She was given haloperidol and it definitely improved the situation. Whilst she would still mention ‘people on her roof’, she wasn’t frightened of them anymore. I found the best way to handle the situation was to agree with her, rather than dismiss what she was saying as a nonsense I would just reassure her that they weren’t going to hurt her. She seemed quite happy with this. I’d definitely speak to your wife’s GP to explore what medications are available for her.

 

[Macduff]

My mum suffered with hallucinations prior to her dementia diagnosis and throughout her illness. In the beginning she was genuinely terrified that someone was in her kitchen or on her roof coming to get her. She was given haloperidol and it definitely improved the situation. Whilst she would still mention ‘people on her roof’, she wasn’t frightened of them anymore. I found the best way to handle the situation was to agree with her, rather than dismiss what she was saying as a nonsense I would just reassure her that they weren’t going to hurt her. She seemed quite happy with this. I’d definitely speak to your wife’s GP to explore what medications are available for her.

Thank you for your response. My wife is now on haloperidol and it appears to be working. Still hallucinating but less so.

 

[Don T]

Hi, I believe that hallucinations are common with Lewy body dementia, which my wife has. They are non threatening, and my approach at the moment it to explain they are not real and generally chase them out of the room by waving my hands where she sees them. Reading on the subject, it is common during dusk when it gets to sort of twilight, and certain objects appear as people. They don’t speak, and she is happy to ignore them. She also sees people we know, ie family members.
The first symptoms were seeing things outside, which even if real would have been very difficult to make out from our tenth floor apartment. I confess to not challenging those visions so much.
She is on Excelon for the LBD which is currently doing a very good job.

 

[ruth23]

My dad had Lewy Body Dementia and his hallucinations were horrific for him. He was in constant trauma and stress. He could not tolerate any medication at all (apparently 50% of LBD patients can't have meds) after trying it and it making him worse and affecting his balance. He would only tell me and my brother about the things he was 'seeing' or 'experiencing' because 'everyone else is in on the conspiracy' or 'they'll take me off and shoot me for killing that man' etc etc... it's heartbreaking isn't it? My initial reaction was without thinking always to try to explain to him that these things were a part of his dementia/illness but eventually he stopped believing me. I could not bring myself to pretend to believe him in case he worried more, but would, as other posters have said, try to distract him with something to do (not TV!). If this didn't work, I would sometimes take him to the place where he was seeing things (sometimes in the garden the trees would be people waiting to take his house away) and show him close up that it wasn't what he thought it was.
It's very hard work and I empathise completely with everything you are going through. We had some great support from a Dementia Rapid Response team who visited almost daily in the community when dad was at home - the GP referred Dad. They oversaw all trials of medication and tried hard to engage dad in community activities to give him some 'occupation'. If there is a similar service where you are it might be worth asking the GP...
Thoughts are with you.

 

[LadyA]

Hi, I believe that hallucinations are common with Lewy body dementia, which my wife has. They are non threatening, and my approach at the moment it to explain they are not real and generally chase them out of the room by waving my hands where she sees them. Reading on the subject, it is common during dusk when it gets to sort of twilight, and certain objects appear as people. They don’t speak, and she is happy to ignore them. She also sees people we know, ie family members.
The first symptoms were seeing things outside, which even if real would have been very difficult to make out from our tenth floor apartment. I confess to not challenging those visions so much.
She is on Excelon for the LBD which is currently doing a very good job.

It's not well known, and not really talked about, but hallucinations are a common symptom of many types of dementia, including Alzheimer's disease, although they are one of the signal symptoms in LBD. Usually, there would be other symptoms too which would point to LBD. My husband was originally thought to have LBD, because of his hallucinations, which were very severe and terrifying for him, and "ran" 24 hours a day, but as time went on and he didn't develop any other LBD symptoms, but symptoms more typical of Alzheimer's Disease, that's what he was diagnosed with.