Food hallucinations

[Lob1968]

Hi,I find the forum a great help but have never posted before so here goes...
My Dad is 77yrs old and has Vascular and Alzheimer's, started with vascular about 5 years ago and more recently diagnosed with Alzheimer's.
He started with hallucinations about 5 months ago, started with seeing people and quickly progressed onto insects/creatures. He sees worm/lizard type creatures everywhere, outside, in his bed, regardless of patterns on material etc. HE finds the creatures very irritating,but handles them on the whole. However, his most recent problem which has been for around 3-4 weeks now is maggot type creatures in his food. This is a problem which is increasing almost daily. We have tried many different ways of discussing/dealing with this(distraction etc) Dad can still be very coherent at times and his communication is still very good.
He is on donepezil and it has been suggested by the mental health team that he goes on anti psychotic medication which we are considering(We have many concerns regarding this as the risks seem huge to someone in his condition)
My mum is at her wits end, trying to deal with it in her own way, making new foods for him etc. Almost every meal is now affected(although not everything he eats) to see him battling through it is heartbreaking.
If anyone has experienced similar or has any advice or thoughts it would be very gratefully received. Thanks. Louise x

 

[Bunpoots]

How long ago did he start the Donepezil? Did the hallucinations start at the same time. I would consider the possibility of them being caused by medication before adding anything new. Have you looked up side effects or discussed this with his Drs?

 

[Lob1968]

How long ago did he start the Donepezil? Did the hallucinations start at the same time. I would consider the possibility of them being caused by medication before adding anything new. Have you looked up side effects or discussed this with his Drs?

Hi, thanks for the reply. The hallucinations started before he started on the donepezil, we are due to see the doctor to review in a weeks time. The medication has improved Dads communication which is great but not improved the hallucinations as was hoped. We are reluctant to start the anti psychotics which is why I wondered if anyone had experienced similar. But yes, we will definitely discuss with the doctor when we see him. Thank you for taking the time to reply.

 

[nitram]

Has your Mum tried agreeing that the maggots exist, eaten some and said how tasty they are?

 

[Lob1968]

Has your Mum tried agreeing that the maggots exist, eaten some and said how tasty they are?

Hi there,
Yes, we all have. We have tried distraction,explaining them away, explaining what is happening, going along with it(I did it most recently yesterday and he carried on eating his food gagging on it after I had eaten some of it, which is awful to see. He said he could see their eyeballs in his food)
It's just so difficult and seems almost impossible to deal with(not Dad, he is very placid, just the situation)
Thank you for the suggestion though

 

[Spamar]

Why not try the anti psychotics? Your dad must be suffering terribly, every meal he gets is crawling with insects, maggots etc. Ugh!
Quetiapine sorted out my OHs delusions and hallucinations and I never regretted regretted him taking them.
As I see it, it's a case of giving him something that may work, but might, only might, have side effects and both he and your mother suffering every time he eats. To me, a no-brainer.
I feel it's definitely worth a try.

 

[chris53]

Good morning Lob, a warm welcome to Talking Point,so sorry your dad is having these hallucinations,that must be very frightening for him, my mum in law has vascular dementia and she started seeing "men or boys with knives" everyday,they had tied her up to the chair,were on the roof,even once were in her fridge....she was given anti psychotic medication and these hallucinations in time stopped, so don't know if it was a phase of this illness or the medication stopped these "sightings",my mum has Alzhiemers and is on Doneprezil and has never (fingers crossed) had hallucinations but goes through various obsessive phrases,it can be so hard to go with flow,but will say Nitrams view of agreeing that they exist and are tasty is a great "love lie"
Just a tiny thought,has dad has his eyes tested recently? only saying that as with some eye problems(or migraines) can cause "floaters" which look like worms.
Hoping you get practical help soon for all concerned.
Take care and keep posting
Chris

 

[LadyA]

Hi Lob. Hallucinations (and paranoia) are one of the very upsetting symptoms that often come with various forms of dementia. Sometimes they are benign, harmless images - an elderly lady I used to know would talk to me about how thrilled she was about the garden party we were at, describing the food, the butterflies she could see, the birds singing, the lovely dresses the "other ladies" were wearing - even though we were indoors and there were just the two of us there. Easy enough to go along with something like that, and those types of hallucinations didn't need medication. My husband on the other hand, lived in his own personal horror movie, 24 hours a day. He was in constant terror whether at home or out. So, he needed medication, and after several tries of different combinations, he was finally put on risperidone plus a couple of other things, which worked brilliantly. Yes, there are risks - and from what I understand, with vascular dementia, the risks are higher. But not everyone suffers side affects. My husband didn't, and he was on risperidone for over four years, as his paranoia & hallucinations never passed. From what I understand, for most people, hallucinations are a phase of the illness, and fade after a while.

The situation must be distressing for your dad, and it's well worth trying something. If he isn't eating enough (and it must be very difficult for him!) he will lose weight, which may make him vulnurable to other illnesses, or weaken him generally. So, it's a case of weighing up risks vs benefits.

 

[Lob1968]

Why not try the anti psychotics? Your dad must be suffering terribly, every meal he gets is crawling with insects, maggots etc. Ugh!
Quetiapine sorted out my OHs delusions and hallucinations and I never regretted regretted him taking them.
As I see it, it's a case of giving him something that may work, but might, only might, have side effects and both he and your mother suffering every time he eats. To me, a no-brainer.
I feel it's definitely worth a try.

Hi,
Thanks for your response. We haven't discounted the anti psychotics, we are waiting until Dads appointment in a weeks time as we feel we need a bit more info regarding them. I imagine that when we have spoken to the doctor Mum will feel better about them. We have basically been given a leaflet and want to speak to a doctor directly with our questions. My mum is very anti the medication due to the risks involved but is prepared to listen to advice. I thank you for yours and will pass people's experiences on to her as they help more than leaflets do.

 

[Lob1968]

Good morning Lob, a warm welcome to Talking Point,so sorry your dad is having these hallucinations,that must be very frightening for him, my mum in law has vascular dementia and she started seeing "men or boys with knives" everyday,they had tied her up to the chair,were on the roof,even once were in her fridge....she was given anti psychotic medication and these hallucinations in time stopped, so don't know if it was a phase of this illness or the medication stopped these "sightings",my mum has Alzhiemers and is on Doneprezil and has never (fingers crossed) had hallucinations but goes through various obsessive phrases,it can be so hard to go with flow,but will say Nitrams view of agreeing that they exist and are tasty is a great "love lie"
Just a tiny thought,has dad has his eyes tested recently? only saying that as with some eye problems(or migraines) can cause "floaters" which look like worms.
Hoping you get practical help soon for all concerned.
Take care and keep posting
Chris

Hi Chris
Dad also sees men/boys with hoods up quite menacing, he sees any one of us in the room with him 'fall asleep, as if dead' This was the first type he experienced. He then progressed onto the insects which seem to be more of an obsession like you mentioned.
He has had a recent eye test, the 'worms' he sees are very specific, about 8-10" long, part of the body shaped like a stingray, they are black with sharp teeth. They are the ones he sees everywhere, outside, in his bed etc. The maggoty ones are only in his food and drinks. He can also feel them when he picks them up, he pointed one out to me the other week, it happened to be a leaf on this occasion and when I picked it up and crumbled it he was amazed, he tried to do it himself and said he ended up with slime all over his hands. It really is heartbreaking.
Thank you so much for taking the time to reply.
Thanks. Louise

 

[Lob1968]

Hi Lob. Hallucinations (and paranoia) are one of the very upsetting symptoms that often come with various forms of dementia. Sometimes they are benign, harmless images - an elderly lady I used to know would talk to me about how thrilled she was about the garden party we were at, describing the food, the butterflies she could see, the birds singing, the lovely dresses the "other ladies" were wearing - even though we were indoors and there were just the two of us there. Easy enough to go along with something like that, and those types of hallucinations didn't need medication. My husband on the other hand, lived in his own personal horror movie, 24 hours a day. He was in constant terror whether at home or out. So, he needed medication, and after several tries of different combinations, he was finally put on risperidone plus a couple of other things, which worked brilliantly. Yes, there are risks - and from what I understand, with vascular dementia, the risks are higher. But not everyone suffers side affects. My husband didn't, and he was on risperidone for over four years, as his paranoia & hallucinations never passed. From what I understand, for most people, hallucinations are a phase of the illness, and fade after a while.

The situation must be distressing for your dad, and it's well worth trying something. If he isn't eating enough (and it must be very difficult for him!) he will lose weight, which may make him vulnurable to other illnesses, or weaken him generally. So, it's a case of weighing up risks vs benefits.

Hi there,
Thank you for sharing your experiences, if only we could all live in a world of garden parties, how lovely
Obviously your own experiences are vastly different to hers, which is really sad. I think that after we have seen the doctor next week, Dad will probably end up on the medication. Mum is very anti the medication due to the risks but hearing other people's experiences I think will help her. He is losing weight which is something we are addressing, but her is even starting to refuse chocolate which is a real worry as it is his favourite. We do need to take action I know.
Thank you so much and I will pass your comments on to my Mum.
Thanks. Louise x

 

[LadyA]

My husband's consultant explained the risks clearly, but, as he also said, you also need to weigh up quality of life against the risk of the medication possibly shortening his life. I felt, and the consultant agreed, that the stress of the hallucinations and paranoia my husband was living with possibly carried equal risks. And as I said, not everyone gets side effects.

 

[Lob1968]

My husband's consultant explained the risks clearly, but, as he also said, you also need to weigh up quality of life against the risk of the medication possibly shortening his life. I felt, and the consultant agreed, that the stress of the hallucinations and paranoia my husband was living with possibly carried equal risks. And as I said, not everyone gets side effects.

Hi again,
I think that that has been a slight problem as far as we are concerned, th exact that the consultant was quite vague about the risks and we were given a leaflet, however, we are seeing another consultant who will hopefully, as your husbands did, explain more clearly. We will feel more able to make an informed choice then I think. I am pleased that the medication helped your husband. Thank you.

 

[arielsmelody]

If it might be a visual problem, I wonder if it would be worth trying tinted glasses with a different colour, just in case it might help? I hope he gets help soon, it sounds nightmareish.

 

[LadyA]

Hi again,
I think that that has been a slight problem as far as we are concerned, th exact that the consultant was quite vague about the risks and we were given a leaflet, however, we are seeing another consultant who will hopefully, as your husbands did, explain more clearly. We will feel more able to make an informed choice then I think. I am pleased that the medication helped your husband. Thank you.

Sometimes, doctors are reluctant to broach the subject themselves, or volunteer opinions either way, in case they might afterwards be accused of persuading you into using medication. However, if you take the initiative, show that you have read the leaflet, and understand the risks, and ask his honest advice as to whether he thinks it's in your dad's interest's to try it, to give him a better quality of life, and given that he's losing weight, then he will probably be more inclined to give advice.

 

[BR_ANA]

He said he could see their eyeballs in his food)

In his mind that's his truth. The food is disgusting. He is suffering while eating and he is loosing weigh. He needs medical help.


Sent from my iPhone using Talking Point

 

[nitram]

"We will feel more able to make an informed choice then I think."

An important aspect of this choice is some knowledge of the risk that any unwanted side effect would be permanent and if not how long would it take for them to subside and to what level.

You have to trust the consultant's judgement, published data relates to a large population with varying symptoms.

Its all about balancing risks, risk is a neutral concept, for every risk of doing something there is an associated risk of not doing it.

 

[Lob1968]

If it might be a visual problem, I wonder if it would be worth trying tinted glasses with a different colour, just in case it might help? I hope he gets help soon, it sounds nightmareish.

Hi, that's certainly worth a try, he has had a recent eye test but we haven't tried tinted glasses. Will give it a go. Thank you

 

[Lob1968]

Sometimes, doctors are reluctant to broach the subject themselves, or volunteer opinions either way, in case they might afterwards be accused of persuading you into using medication. However, if you take the initiative, show that you have read the leaflet, and understand the risks, and ask his honest advice as to whether he thinks it's in your dad's interest's to try it, to give him a better quality of life, and given that he's losing weight, then he will probably be more inclined to give advice.

Thank you, yes, you are probably right. Perhaps we are being unrealistic and maybe we are sort of hoping they will take the decision away from us. Which they obviously aren't going to do. Thank you, good advice x

 

[Ludlow]

Hi
I just wanted to add one more voice to those saying don't rule anti-psychotics out.
My mum was having delusions that a neighbour was coming into the house to attack her. It occupied her thoughts all day and left her crying and begging to be taken away to safety at night. It took 3 different anti-psychotics before we found one that worked but now she is a different person with no fears. Yes, there are some risks, but have you read the possible side-effects of paracetamol?? They have to warn you of the possibilities so you don't sue I guess. However, even if there had been (or may still be) a bad side-effect, I would not regret it. It has freed my mum from a dark place that I would never want her to be.