Poor mum been having awful hallucinations.

[chezzie]

Hi, it's been a very grim few days. Mum is nearly 90 and recently the dementia demon really got a hold of her. Watching TV during the day is a big part of mums life although she is visited regulary during the day by us ( me, my sister and husband) and taken out every day. She has begun to believe that the people on TV are in the room and want to do harm to her. Of course it's impossible to dissuade her otherwise and we try to comfort her as best we can.

She gets distraught to the extent she says she wants to kill herself, this has been a dramatic change in her. Last Tuesday the GP visited to check for infection and ordered full blood screen, all clear. He got the community mental health nurse to visit mum and assessed her on Thursday. Mum was ok at the time of the visit but the nurse noted my
concerns. On Friday we were back to square 1 and mum was so distressed I rang mental health nurse who said I needed to get the GP to visit again to rule out infection again.


The GP came and said mum possibly had a few noises in her chest and prescribed antibiotics for 5 days even though there was no temperature and mum was not presenting as physically unwell. I have to wait and see if she improves before they review her. It's been heartbreaking listening to mum talking in a torrent of words and jumbled thoughts trying to articulate her anxieties; its like a manic mantra. As soon as I
have calmed her and left the room she starts again.

She had a better day today but I'm dreading tomorrow and it starting again. We have maintained her in her home ( just a few mins walk from me) for nearly 10 years with masses of input from us and carers doing early mornings, some tea calls and more recently a couple of bedtimes each week. I feel guilty leaving her night and know we have to start looking for a care home because she is becoming more vulnerable.

I know infections can cause terrible confusion but can't help thinking that her dementia has taken a downward spiral. I want to know what they can do to help her when these wretched hallucinations strike. Has anyone any advice about medication and if it has helped in this situation? I'm sure she is depressed on top of everything else and I feel so desperate for her; seeing her cry so piteously is the most dreadful thing. The heartbreaking thing was she was trying to comfort me, by telling me it wasn't my fault.

Thank you for taking the time to read this, I would appreciate any advice.

 

[lin1]

Hi. Sorry to hear about your mum. I hope the Antibiotics kick in soon and you see a rapid improvement in your mum.
It is heartbreaking

My experience with mum is , it only took a very mild infection to cause a Downturn , which fortunately she mainly recovered from and got back to her previous self in time.

It is quite normal for the elderly or someone with dementia who has an infection, to show none of the usual signs that we would expect such as a temperature.
Quite often the only way I knew mum was ill was because of a sudden worsening of her dementia.
It often took a two courses of Antibiotics to clear the UTI .

Please let us know how Mum gets on

 

[canary]

I hope the antiBs improve things, but you are right - thinking that the TV is real is one of those things.
Mum has just started doing this and Ive noticed that any sort of violence - even jokey adverts - can trigger her off and the news is a big no-no. The only answer that I have is to vet her viewing drastically and go for a lot of old films on DVD

 

[Hobson]

My Mum used to do this, not to the extent of distress as your Mum fortunately. She thought the people in the TV were speaking a different language as she couldn't follow what they were saying. this then spiralled down to they were laughing at her
TV was all she did so it left a big hole in the day.
An occupational therapy colleague at work suggested "Calmer by Nature" DVD's for Mum to watch.
They are calming nature scenes filmed at a gentle speed featuring slowly moving rivers trees etc. and woodland animals and birds doing what they do. There is no dialogue and no story. I find them strangely compelling despite having watched them hundreds of times.
They calm Mum like nothing else as it is such a 'normal' and hardwired thing for her to do watching the telly.
I bought ours from Amazon (there are 2) but I have seen them in our library for loan.

I hope it is a short lived phase for you - it is such a worry and so emotionally draining.
very best wishes
Kate

 

[canary]

I like the sound of those DVDs, Hobson. I must look out for them.

 

[tre]

My husband has for sometime had this difficulty with TV and feeling threatened by anything loud or violent. As you say the news is a complete no no. This for us is an ongoing progression of the illness and not due to any infection.
I have found some DVDs OK but even some with a PG rating can upset him if there is shouting. There are some that he likes though but obviously it is easier to police this as we are in the same house whereas I imagine your mum may access something which does not suit her while she is on her own. I find even some of the ads are triggers so I need the mute button at the ready.
To be honest we watch very little TV now- me included as there is no pleasure in trying to watch anything that upsets him. At the moment I am only watching Wolf Hall and The Casual Vacancy but when I watch these I set him up with headphones listening to some of his favourite music.
When we do watch TV , as he is now virtually blind, we have the audio description on.
Dvds he likes include Fawlty Towers and Dads Army and his favourite film is Life of Brian. I have found some audio books quite successful, especially if they are just read aloud rather than dramatised. His short term memory can be a bit of a problem on complex stories but we have had great success with things aimed at older children and you can pick these up quite cheaply at charity shops. THe Harry Potter books were a hit and he likes the Just William books.
Do you think if you were to suggest DVDs or music instead of TV for your mum that she would be able to set them going for herself?
Tre

 

[kaycee30]

Hallucinations are very upsetting, and so real for the person experiencing them, no point in discussing them as can cause upset and arguements, so as long as theres no harm, we go along with it, we've had bugs in the house, sheep, been on a sinking ship and have people in the house telling him "today is the day he's going to die'.
The way we cope with Dad is to be careful with what he watches on TV, he finds alot of it upsetting, but only sometimes which makes it difficult to know what to watch. Comedies are The best way forward for us, comedy of all levels, rude, childrens and fav at the moment is Mr Bean!
Best of luck. x

 

[chezzie]

Hello there and thank you for the replies you left which have been very helpful. I will be ordering the Calmer Nature DVD's Kate, thanks for that suggestion and I had forgotten that mum likes Mr Bean so thanks Kaycee! She isn't able to operate the tv remote control which is an issue when she is on her own. I wish we could get long playing DVD's, maybe we can so will look into that.

Its a shame that her old favourites like Cash in the Attic and Flog it seem to trigger things for her. She thinks they are looking at her stuff and want her house. We search through the tv listings for suitable stuff.

Since I posted this mum has been prescribed Risperidone 500 mcg twice a day. She has been on them for nearly 2 weeks and she seems much better in herself. Her agitation and anxieties are not so acute and she seems more alert and engaged and happier in herself than she has for along time. I am not sure she is able to be on it long term and I'm worried about her if it has to be stopped.

There do seem to be some side effects such as her feeling perhaps a little woozy after taking them and although more conversational she still jumbles things up badly but that might just be down to her decline anyway. The mental health nurse was supposed to come back and visit but not heard from her.

I went to visit a care home last week and it was very good; the staff very caring and it was all spotless and the mangers very professional. I have filled in a referral form but it will more than likely be a very long wait. I find it very hard to accept she will have to go into care soon. In the meantime it continuous to be a huge challenge to juggle mum's care with our work as it for so many of us. I reached rock bottom last
week and simply didn't know how we could sustain her at home whilst a place becomes available. I know I need to ask our care agency about the possibility of more care visits during the day and also about staying the night. My heads spinning with it all , its so exhausting.

Take care all of you xx

 

[EdG]

Ed USA

Has there been any recent changes in your Mom's medications? My Dad had passed away recently from cancer, and Mom has dementia. She has always been a high anxiety person, and was very distraught with Dad's passing. Her doctor prescribed a common dementia medication (Seroquel) used to help calm people. In Mom's case it had the opposite effect. 2 weeks after starting the medication she started hallucinating and thought that she had killed my Dad (thought she pushed him causing him to fall backward and hit his head, and she couldn't revive him). We got her off that medication and within a week the hallucinations subsided. Just because a medication works for a majority of folks, doesn't mean it works for everyone. Best wishes.

 

[cazened]

My Dad is 93 and has just had a severe bout of hallucination which lasted non stop for 12 hours or more until he burnt himself out.As this was the first time it had happened i was very upset and very very stressed as Dad lives alone and couldnt leave him.
I have had the discussion about a care home but Dad is adament he wants to stay in his own home, but for how long i dont know. Life is very difficult and yesterday he started hallucinating again but not as bad.

 

[patsycat]

mum also gets hallucinations - I find its cyclical will last for up to 12 hours then she calms down, has a period of depression, then a brief spell of 'normality' then we're off again- nothing seems to make a difference so we just ride it out

 

[VonVee]

Dear Chezzie

I wish i could offer you some advise, but ive only been caring for my mum 3 months semi full time since the death of my father, so really im not experienced enough to advise you, but i can offer you support and an ear and a shoulder if you ever need one, this dementia thing is a hard road, and since xmas ive felt as if im going mad myself, so god knows what you must be feeling dealing with in on and off for 10 years, so your a saint to me in my eyes, as im crumbling and hardly dealing myself, but if its any consolation, im going through the haluzinations with my mother too, some are and have quite funny, and some have been quite scary and weird also and im left on the spot of not knowing what to do. So my heart goes out to you Chezzie, i understand and i feel for you. Take care, V x

 

[arty-julia]

mild hallucinations and it turned out he had dry macular degeneration in the eyes

Even though the GP has given antibiotics you may want to check for macular degeneration because it was only when we went to the hospital to see about an ingrowing eyelash did we discover this other debilitating disease, that can cause hallucinations, had taken hold. My father would look out at the bushes behind our house and clearly see a number 7 in the foliage clearings. He would also imagine that the shadows on the road, when he was still driving, were dead bodies in front of us!
I really feel for you and your family who are enduring this plight.

Hi, it's been a very grim few days. Mum is nearly 90 and recently the dementia demon really got a hold of her. Watching TV during the day is a big part of mums life although she is visited regulary during the day by us ( me, my sister and husband) and taken out every day. She has begun to believe that the people on TV are in the room and want to do harm to her. Of course it's impossible to dissuade her otherwise and we try to comfort her as best we can.

She gets distraught to the extent she says she wants to kill herself, this has been a dramatic change in her. Last Tuesday the GP visited to check for infection and ordered full blood screen, all clear. He got the community mental health nurse to visit mum and assessed her on Thursday. Mum was ok at the time of the visit but the nurse noted my
concerns. On Friday we were back to square 1 and mum was so distressed I rang mental health nurse who said I needed to get the GP to visit again to rule out infection again.


The GP came and said mum possibly had a few noises in her chest and prescribed antibiotics for 5 days even though there was no temperature and mum was not presenting as physically unwell. I have to wait and see if she improves before they review her. It's been heartbreaking listening to mum talking in a torrent of words and jumbled thoughts trying to articulate her anxieties; its like a manic mantra. As soon as I
have calmed her and left the room she starts again.

She had a better day today but I'm dreading tomorrow and it starting again. We have maintained her in her home ( just a few mins walk from me) for nearly 10 years with masses of input from us and carers doing early mornings, some tea calls and more recently a couple of bedtimes each week. I feel guilty leaving her night and know we have to start looking for a care home because she is becoming more vulnerable.

I know infections can cause terrible confusion but can't help thinking that her dementia has taken a downward spiral. I want to know what they can do to help her when these wretched hallucinations strike. Has anyone any advice about medication and if it has helped in this situation? I'm sure she is depressed on top of everything else and I feel so desperate for her; seeing her cry so piteously is the most dreadful thing. The heartbreaking thing was she was trying to comfort me, by telling me it wasn't my fault.

Thank you for taking the time to read this, I would appreciate any advice.

 

[tweetypie]

In some areas it is possible to get people in to be with people with dementia, they're called dementia friends locally or something like that.

They are CRB checked and it is people who are willing to just go along and befriend a person with Alzheimer's or dementia and be with them for a few hours to help them through the day.

That could be ideal to help your mum as she goes through this stage.

My mum would tell me about things like this and when she was lucid I'd just tell her it was part of her illness and nothing to be frightened about, although agreeing with her that it must be very frightening to have them as they appear so real.

It is a horrible part of the illness.

Another suggestion would be to leave music on instead of the TV - is there a particular radio station she likes? Classical is often better - calming.

 

[Jaye Conte]

Invisible visitors and memory loss

Hi. I’ve had such good advice from this site before, and now I’m back with a couple of new questions. Recently Mum has come to believe that on returning to her room in sheltered accommodation one day she found a group of children within. She explained that these children had stolen some of her clothes (I had taken away a couple of her nicest things to hand-wash them and had forgotten to leave a written message to this effect, although I had of course told Mum what I proposed to do). She also believes that these children try to gain access to her room from outside (her room is on the ground floor). I’ve told her that no-one would ever enter her room, and I’ve arranged with the staff there to leave a message for them as well as for Mum if I do take away anything to wash, but I don’t think she believes me.
This new fear of hers seems to have come hand in hand with a very sudden and pretty major loss of memory. Although Mum has good and bad days for remembering things I have not known a period where such very massive losses occur. Is this normal? And do I remind her about people she has known or is that only going to add to her worries, but illustrating – I guess – just how many things she is losing. For the first time since she was diagnosed as having Alzheimer’s Mum seems really unnerved by her loss of memories. Is this some kind of downward spiral? For the first time (again), since the diagnosis, Mum seems to understand that something is wrong with her memory.
So – advice or suggestions would be hugely appreciated.
Thank you.

 

[Jeffers]

Hallucinations

Hi, My Mum had dreadful hallucinations about a year ago - partly they were in the form of the care home staff planning to throw her out in the middle of the night, partly they related to animals being trained to attack her or coming out of the TV to do the same. She thought that ducks and other birds outside had been stabbed and were walking round with knives in stuck in them. It was all very upsetting, and the only way that she was eventually brought out of it was by a change in her medication, ie the addition of risperidone. Over the past few months, although still feeling to a certain extent that the staff have it in for her, because she thinks that she doesn't fit in, the worst of the hallucinations have stayed away, which is a real blessing, as it was awful to see how upset she was about them.
I hope that your mum's change in medication has similarly long-term success.
All the very best,
Jeffers.

 

[brijan]

Hi, it's been a very grim few days. Mum is nearly 90 and recently the dementia demon really got a hold of her. Watching TV during the day is a big part of mums life although she is visited regulary during the day by us ( me, my sister and husband) and taken out every day. She has begun to believe that the people on TV are in the room and want to do harm to her. Of course it's impossible to dissuade her otherwise and we try to comfort her as best we can.

She gets distraught to the extent she says she wants to kill herself, this has been a dramatic change in her. Last Tuesday the GP visited to check for infection and ordered full blood screen, all clear. He got the community mental health nurse to visit mum and assessed her on Thursday. Mum was ok at the time of the visit but the nurse noted my
concerns. On Friday we were back to square 1 and mum was so distressed I rang mental health nurse who said I needed to get the GP to visit again to rule out infection again.


The GP came and said mum possibly had a few noises in her chest and prescribed antibiotics for 5 days even though there was no temperature and mum was not presenting as physically unwell. I have to wait and see if she improves before they review her. It's been heartbreaking listening to mum talking in a torrent of words and jumbled thoughts trying to articulate her anxieties; its like a manic mantra. As soon as I
have calmed her and left the room she starts again.

She had a better day today but I'm dreading tomorrow and it starting again. We have maintained her in her home ( just a few mins walk from me) for nearly 10 years with masses of input from us and carers doing early mornings, some tea calls and more recently a couple of bedtimes each week. I feel guilty leaving her night and know we have to start looking for a care home because she is becoming more vulnerable.

I know infections can cause terrible confusion but can't help thinking that her dementia has taken a downward spiral. I want to know what they can do to help her when these wretched hallucinations strike. Has anyone any advice about medication and if it has helped in this situation? I'm sure she is depressed on top of everything else and I feel so desperate for her; seeing her cry so piteously is the most dreadful thing. The heartbreaking thing was she was trying to comfort me, by telling me it wasn't my fault.

Thank you for taking the time to read this, I would appreciate any advice.

Hi

So sorry to hear about your mum.

My mum in law is 90 and has dementia.
Going back 2/3 years she kept losing things and started blaming my husband (her only son) for everything even getting to the point of not speaking to him for several months.
We used to have keys to her retirement flat, which my husband returned.
Things continued to go missing, and when it was pointed out to her that we couldnt get in to her flat without her, she suddenly had a 'man in the loft' (3rd floor flat with loft hatch) - nothing would convince her otherwise - she would not put the light on in the bathroom (pitch black - no window) because she was convinced he was watching her and taking photos of her which he had somehow installed in the walls. Countless times she came to the door with a black eye where she had banged her face on the taps.
Eventually we moved her to a flat with no loft and insisted that her doctor take it further. He referred her to the local psyciatrist in charge of mental health for the elderly. She has now been on risperidone tablets for about a year now - which amongst other things they are used for hallucinations.
She still loses things and is quite forgetful, but she never mentions the 'man in the loft'
or anyone similar.
Maybe your mother could be prescribed similar if she is not already taking them.

It is a very difficult illness, and I am sure you will agree the worst thing is not knowing exactly what is going to come next!!

 

[canary]

Hi. I’ve had such good advice from this site before, and now I’m back with a couple of new questions. Recently Mum has come to believe that on returning to her room in sheltered accommodation one day she found a group of children within. She explained that these children had stolen some of her clothes (I had taken away a couple of her nicest things to hand-wash them and had forgotten to leave a written message to this effect, although I had of course told Mum what I proposed to do). She also believes that these children try to gain access to her room from outside (her room is on the ground floor). I’ve told her that no-one would ever enter her room, and I’ve arranged with the staff there to leave a message for them as well as for Mum if I do take away anything to wash, but I don’t think she believes me.
This new fear of hers seems to have come hand in hand with a very sudden and pretty major loss of memory. Although Mum has good and bad days for remembering things I have not known a period where such very massive losses occur. Is this normal? And do I remind her about people she has known or is that only going to add to her worries, but illustrating – I guess – just how many things she is losing. For the first time since she was diagnosed as having Alzheimer’s Mum seems really unnerved by her loss of memories. Is this some kind of downward spiral? For the first time (again), since the diagnosis, Mum seems to understand that something is wrong with her memory.
So – advice or suggestions would be hugely appreciated.
Thank you.

Those blooming kids get everywhere!
Mum (before she went into a CH) believed that she lived under a school and the children used to come in and move things around, they also used to use all the hot water, eat all her biscuits and make a terrific racket going up and down the stairs. And all while she was living in a bungalow too

This belief in made up things is called confabulation and is due to the brain trying to "fill in" the gaps in memory. She will really believe that these things are true, however ridiculous it seems to onlookers. It is a common thing in dementia and there isnt much you can do about it - its best not to try and correct them (unless its essential). A sense of humour is required and I just make non-committal noises and change the subject

 

[Goldi]

Hallucinations are a strange thing. my dad thought an Egyptian family had moved into his house, saw 2 anteaters in the lounge, some red Indians in the garden and a couple of weeks ago told us he had just delivered a baby boy!

I find the best way to respond is to react as if they are real so that he feels he is being taken seriously. One of my favourite incidents was when he was in the hospital and he went to the nurses station, lent on the desk as if it was a pub bar and ordered a couple of pints!

 

[Grace L]

My husband woke up one day thinking we were living in France ... and we both were speaking perfect French.
He also thought the people on BBC News were speaking French....

The night before, just before bed, there has been a BBC 'Breaking News' item that was in France....
He commented at the time, that he was pleased that he remembered his French from his schooldays
and that he could understand everything the reporter was saying....
Thing is, reporter was speaking in English, but signs etc. in background were of course French.

We went to bed, with me thinking... " ooh, that's knew, he's not done that before".
Little did I know, he'd wake up thinking we were now living in France.