How to cope with hallucinations

[Marylil52]

My husband has dementia with Lewy bodies. Originally his diagnosis was 'atypical DLB' because there were no hallucinations. But recently these have started. Initially I thought he was merely forgetful when he couldn't remember who I was, but then a few weeks later he saw people in our kitchen and also became aggressive, wanting to escape from our house and throwing furniture. He is taking a new drug, memantine, which stopped this for a while. But this morning the delusions returned. He thinks I'm a hostile stranger whom he dislikes (we are very lovingly and happily married) - but thank god, either because of the memantine or possibly because of the very small dose (2.5mg) of diazepam the Dr has said I can give him at times like this - he has been sullenly hostile but not physically aggressive.
I'm finding this frightening and horrifying. Not just to be disliked by a stranger in my husband's body (I know that this is not D) but also because I'm not wholly confident that he won't become aggressive.
His care coordinator has said I should call the mental health team if there is trouble; and if it's a matter of immediate physical risk, the police. The thought of D, frightened, angry and deluded, being confronted by police - however kind and helpful, as I'm told they usually are - is awful. The thought that the delusions will recur with other people in the house (our very nice cleaner who comes twice a week, or the carers who come morning and evening to help him wash, dress, undress), is also deeply worrying.
Please, can anyone tell me what they do and how they cope? Is residential care the only solution? He is aware and intelligent quite often. I can't bear the thought of locking him away. What can I do? I would be so grateful for any suggestions.

 

[liz56]

Sorry I have no first hand experience of DLB , but someone more useful will I'm sure be along soon! Meanwhile I hope you have a peaceful night x

 

[Marylil52]

Sorry I have no first hand experience of DLB , but someone more useful will I'm sure be along soon! Meanwhile I hope you have a peaceful night x

Thank you Liz. You too!

 

[Scarlett123]

Hi, and I'm sorry to read of your experiences. Like many people with Alzheimer's, my late husband truly believed that he saw the people that to me, were invisible. To begin with I would correct him every time. I used to do that with a lot of the thing he said that were wrong.

But, over the years, I adopted better coping strategies, and these worked. In a nutshell - "go with the flow". If John saw people in the house, I would tell them to go away. This included a visit one Sunday morning from Margaret Thatcher.

It would have been futile for me to say that (a) she wouldn't be visiting us, ever and (b) she was dead, because John "knew" she was there. So, talking to the wall in the hall, I said it wasn't convenient, but thanked her for coming, then opened the front door and called out "mind how you go!", to the empty street.

You carers will be aware of these traits, and I'm sure a few discreet words with your cleaner, will put your mind at rest, and hers. Others here on TP will probably soon be along to let you know how they cope, but it was TP that kept me going.

Always post when there is anything worrying you.

 

[Alicenutter]

Hello

My husband has been diagnosed with frontotemporal dementia, but personally I am sure that Lewy Body is involved too. His fluctuations are typical of Lewy Body, and so, sadly, are the hallucinations. It was this last symptom that finally pushed me, late in the day, to seek treatment for him.

Your husbands hallucinations concerning you may come under the heading of Capgras syndrome, which is when somebody believes that somebody else has been replaced by an impostor. Usually, the somebody else is a spouse or someone they are very close to. The first time this happened to my husband, I had no idea what was going on, and reacted as anyone else would I think - I argued. Very, very quickly I learnt not to argue, and w now live in an occasionally uneasy compromise with a bevy of 'English ladies' (my husband is American).

In any case, your safety is of primary importance if you are to continue taking care of your husband. If you can find means to downplay and de-dramatise the hallucinations, your husband may feel reassured and become less aggressive. I think that the aggression springs from fear, and if you become upset too (and we all do) then that simply adds to the fear. The other night, after a long and stressful journey from the States to our home and business in France, my husband was worried that "I" would harm him - he didn't think I was me, but another woman who wanted to steal his house and his money. He asked me if I had a gun, just as I was falling asleep (he is American after all!). By keeping my tone very neutral, very calm, and my answers very brief, I was able to reassure him until he fell asleep, and it was sleep that he desperately needed.

If you are unable to reassure him and he continues to be aggressive towards you, and you are physically OR psychologically frightened, then you may have to call in the heavy brigade. I'm not sure what the set-up is in the UK, I have been on a steep learning curve about options available in the US and am now having to learn the same in France, but many TP'ers have said that it was after their OH had been hospitalised in an emergency that he or she was stabilised. I did this in the States, with the help of a family member, and the medication (Risperidone) that was prescribed helped a lot to calm him down, although it did not get rid of the Capgras delusions.

I too am totally unable to cope with anything except the lightest fiction and what they call in French 'faits divers', little human interest stories in the press, although I'm also trying to read some serious short stories (Flannery O'Connor) in between the thrillers. I am just giving myself a break on this - it's important to say to yourself that while part of you seems to be being diminished, another part of you is growing, and that, strange as this may seem, this is a gift. Try to stay in touch with friends and have a laugh from time to time, though, and seize any opportunity that enables your husband to enjoy himself. But you have to learn to recognise when situations - social, emotional, environmental - are too much for him to cope with. And the same goes for yourself.

A word of warning about Diazepam. I was prescribed Lorazepam for anxiety, and while it was wonderful while it lasted, it gave me a terrible emotional hangover the next day. I became short-tempered, aggressive and tearful. So I stopped taking it altogether. I do wonder if it has this effect on some PWD too.

Good luck and keep posting xxxxx
Alice

 

[nitram]

My wife had LDB, the addition of Sodium Valproate to Memantine was successful in reducing hallucinations/delusions for some time.

The Sodium Valproate was Epilim which is a crushable tablet as she chewed anything put in her mouth.

 

[LYN T]

Pete was also on Sodium Valporate and Memantine. SV also comes in liquid form.

XX

 

[Moseley B13]

My husband has dementia with Lewy bodies. Originally his diagnosis was 'atypical DLB' because there were no hallucinations. But recently these have started. Initially I thought he was merely forgetful when he couldn't remember who I was, but then a few weeks later he saw people in our kitchen and also became aggressive, wanting to escape from our house and throwing furniture. He is taking a new drug, memantine, which stopped this for a while. But this morning the delusions returned. He thinks I'm a hostile stranger whom he dislikes (we are very lovingly and happily married) - but thank god, either because of the memantine or possibly because of the very small dose (2.5mg) of diazepam the Dr has said I can give him at times like this - he has been sullenly hostile but not physically aggressive.
I'm finding this frightening and horrifying. Not just to be disliked by a stranger in my husband's body (I know that this is not D) but also because I'm not wholly confident that he won't become aggressive.
His care coordinator has said I should call the mental health team if there is trouble; and if it's a matter of immediate physical risk, the police. The thought of D, frightened, angry and deluded, being confronted by police - however kind and helpful, as I'm told they usually are - is awful. The thought that the delusions will recur with other people in the house (our very nice cleaner who comes twice a week, or the carers who come morning and evening to help him wash, dress, undress), is also deeply worrying.
Please, can anyone tell me what they do and how they cope? Is residential care the only solution? He is aware and intelligent quite often. I can't bear the thought of locking him away. What can I do? I would be so grateful for any suggestions.

I agree with Alicenutter that thinking that you are a hostile stranger is not an hallucination but Capgras. My husband's Capgras symptoms are, to date, just confusing for him, not an issue for me. They include thinking I'm two different people and not knowing which he is talking to, and thinking that our house is different and wishing to return to our old house.

So far, with hallucinations, when he mentions strangers in the house, he can be brought back to reality, but if/when he can't be brought back to reality I'm advised that just telling the 'strangers' to go away is best, rather than arguing about it. So far the 'strangers' can be annoying - e.g. by using the lavatory when he needs it - but have not caused any hostility. Like you, putting him in a home is something I hope that I'll never have to do - we have made alterations to our house to make it easier to stay here together.

 

[Scarlett123]

Everybody is different, and in John's case, soothing words had no effect. In fact, they made him more aggressive, hostile and angry. So, when he said he couldn't sleep because of the other noisy people in his room, I flung open his bedroom door and told "them" in my Mrs Angry voice, that they could all sling their hooks, and clear off, cos this was John's room, and only John's room.

I then opened the front door and said "go on, all of you, clear off now!". And John thanked me. Come to think of it, my neighbours must have got quite used to me calling things out from the front door - to nobody.

 

[Alicenutter]

Scarlett, I LOVE you. You are an inspiration. So creative, such fun...

I'll bear this in mind when the time comes; I'm quite sure soothing words won't always suffice with my husband.


Sent from my iPhone using Talking Point

 

[The Chewtor]

Everybody is different, and in John's case, soothing words had no effect. In fact, they made him more aggressive, hostile and angry. So, when he said he couldn't sleep because of the other noisy people in his room, I flung open his bedroom door and told "them" in my Mrs Angry voice, that they could all sling their hooks, and clear off, cos this was John's room, and only John's room.

I then opened the front door and said "go on, all of you, clear off now!". And John thanked me. Come to think of it, my neighbours must have got quite used to me calling things out from the front door - to nobody.

scarlett your words create such a fantastic and amusing vision of what must be an absolutely awful situation. i thought us sufferers were supposed to be the 'nutty' ones.

wayne

 

[triumph25]

Hallucinations

My OH suffers from hallucinations from time to time! The last was the 7 people in his bed that meant he couldn't get in it!

Previously it's been people at the front door and strangers in the house etc. the other day he was getting agitated and said 'I don't know where Sue is! (me) I don't know where she's gone.

I've developed various strategies, humour sometimes works, ( he laughed when I said I've heard if 3 in a bed but 7 is just plain greedy!) . Like Scarlett I've shouted at the imaginary people at the door and locked them out!

And I've also told him I'll make up the spare bed fir the others that are staying! It just depends on what I think will work best at the time.

But I am lucky, I've only really felt frightened of him a few times and I know it's not him really.

But you will have to try different strategies to see which works best for you and him, and bear in mind that what works one day might be totally the wrong thing to do another!

Patience is a virtue my friend! & boy do we need it!

 

[Marylil52]

Thank you all so much for your wisdom, and funniness, so cheering. I'll bear your advice about going with the flow of D's delusions; and also I've looked up Capgras Syndrome (never heard of before) which is enormously helpful. D wason sodium valproate for years when he had what they thought was epilepsy - actually the early beginnings of this terrible DLB. He's on a big cocktail of drugs at the moment so would probably be best to leave things be for the moment. Alicenutter: what you say about diazepam rings some warning bells - thank you.
I wish you all some rest and peace tonight. What a wonderful thing community is.

 

[Scarlett123]

I always feel so gratified when I relate my stories, and someone takes up an idea. Or I make them smile. But I must stress that I honed my skills over many years, having made loads of mistakes originally.

I honestly thought that by patiently correcting John, whenever he said, or did, the wrong thing, would help him, and his favourite question, "is it Thursday?" drove me to the edge. Especially as he might ask it a dozen times a minute.

So one day, when he asked it, I said "that's right", and he looked so pleased, What did it matter anyway? As a long term carer/partner of someone with AD, you enter The Twilight Zone, and some apprenticeships last a long time.

According to John, I also found the time for numerous affairs, sometimes with complete strangers. He once said that so many people came here cos they knew about me. That reminded me of the song "Hickory Holler's Tramp", so, in exasperation, I said that I'd better get a red light then, and he said "good idea"!!!

It's amazing I have any marbles left, having lost so many.

 

[Moseley B13]

I always feel so gratified when I relate my stories, and someone takes up an idea. Or I make them smile. But I must stress that I honed my skills over many years, having made loads of mistakes originally.

I honestly thought that by patiently correcting John, whenever he said, or did, the wrong thing, would help him, and his favourite question, "is it Thursday?" drove me to the edge. Especially as he might ask it a dozen times a minute.

So one day, when he asked it, I said "that's right", and he looked so pleased, What did it matter anyway? As a long term carer/partner of someone with AD, you enter The Twilight Zone, and some apprenticeships last a long time.

According to John, I also found the time for numerous affairs, sometimes with complete strangers. He once said that so many people came here cos they knew about me. That reminded me of the song "Hickory Holler's Tramp", so, in exasperation, I said that I'd better get a red light then, and he said "good idea"!!!

It's amazing I have any marbles left, having lost so many.

I've not checked in for a few days - Thanks everyone for things that made me laugh and gave me strategies and hope for the future

 

[MollyD]

That is so awful for you both. Heartbreaking and terrifying.

Mum went through this post hip surgery while in hospital so she was monitored closely so she didn't harm herself and others. Her medication has been tweaked a great deal over the last 7 months (still tweaking it). While there are still problems with her sleep and she still has hallucinations, they are no longer violent and she's not paranoid now.

Is your GP/psychiatrist on hand to regulate your husband's response on meds? We found it difficult at times to get swift action from the hospital re adjusting meds. Her GP has started re-adjusting dosages and types of med over the phone based on my concerns and reports. Could you ask your GP for similar ongoing input?

Calling the police sounds extreme to me and traumatizing for both of you.

 

[Morganlefay]

Scarlett, I LOVE you. You are an inspiration. So creative, such fun...

I'll bear this in mind when the time comes; I'm quite sure soothing words won't always suffice with my husband.


Sent from my iPhone using Talking Point

I love Scarlett too !

 

[Scarlett123]

I love Scarlett too !

Lurving the lurve!!!! xxx

 

[Jennyc]

Hello Marylil52, so sorry to hear of the difficult times you are going through. Dementia with Lewy Bodies sounds like a hard thing to live with, and a very hard thing to care for someone with.

My husband has what you might term "straightforward" Alzheimers, he occasionally sees cats where there are none, but that is not threatening, and at night if he wanders onto the landing and I ask where he is going, he says "to find the others", but mainly it is a question of memory, repetition, and not being able to perform even the simplest task.

But your mention of Diazepam made me remember an occasion a couple of year's ago when I hurt my back badly and along with pain killers, was prescribed Diazepam. I had the most terrifying hallucinations and thought I was going mad. Eventually I realised it was caused by the drug- a very low dose, I think around 2.5mg or however they describe it, and checked with my GP. She said yes, it was an occasional side effect, and not to take any drugs with "pam" at the end of their name as I was susceptible, so I just wondered if it was possible the Diazepam could not be helpful?

I hope things get easier - I was talking to a lovely lady who works for the Alzheimers Association today in a support group I attend, and one of the other people there also has a husband with a similar diagnosis as yours. The AA person said no point in trying to reason hallucinations away, to just try to make them seem as least threatening as possible and try to distract, or send them away (as Scarlett so graphically described) because to the person suffering from them, they were reality. Really so hard for you.