So last night my husband seemed fairly lucid. Our son helped him to the bed and then called out to me. When I reached the room, my husband was on the floor, vigorously stomping on a scrap of fabric that our little boy snipped off his sock. He was terrified. I picked it up to show him it was just a piece of sock, but he smacked it out of my hand, his whole body trembled, he was in such a state that he pulled the rail off the bed and smacked his head on the bedframe. And was clinging to our son and mouthing,"Why did you attack me?"
Today he brought it back up. What he saw was spiders. Seven inches long with giant scary eyes. And he is still angry at me and accusing me of attacking him. I don't know how much more I can take of this. I am always the one he's angry at and it's so hard to be compassionate.
What do you do? What can I do to deescalate the tension in a completely difficult situation? If I knew he was seeing gigantic spiders, I could have done something different. PSP has no record of hallucinations. The doctor didn't believe it could be Lewy body dementia. But could Alzheimers cause this type of hallucination? And would it be this difficult to diagnose?
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I was reading your first few posts and got lost in Christine47's link looking up Frontotemporal Dementias with psychosis. We often hear that psychosis is not a usual symptom of PSP. In CBD (which my husband had) it appears to be more common to have FTD symptoms such as disinhibition and inappropriate behaviours - but again, not usually psychosis (hallucinations and delusions.) So how does this make sense with your husband?
You have a sense that maybe he has Dementia with Lewy Bodies. I also wondered about Frontotemporal Lobal Degeneration. One of the articles quoted on FTD Talk site stated:
"...Subsequently, a group in Australia linked psychosis in FTD to the youngest cases (in other words those developing illness before age 40)."
I also read that Alzheimer's can include hallucinations. (In fact, our neurologist wouldn't rule out Alzheimer's for several years, until the CBD symptoms became more obvious.)
Did the neurologist at Mayo know that your husband has hallucinations, and did he/she have any response to that? (sorry if you've already said).
It's so alarming not knowing exactly what's going on and what to expect next. I feel for you!! I don't know if an anti-psychotic is appropriate or not, but I hope you'll get some better support soon. You just shouldn't have to deal with this by yourself.
They did put him on a very low dose anti psychotic, and it has helped a bit. They took him off a few meds they felt were causing the cognitive issues, but he thought I was his daughter the other day and complained that the birds, Seattle's, are always trying to poop on him, when I mentioned our anniversary trip to Seattle. This is a really helpful comment. I want to read up more raincitygirl. Frontotemporal dementia? It sounds like a good direction. He definitely has the psychosis part at times.
It might be that he does not have a 'pure form' of PSP. My wife for example has elements of PSP and CBD. It makes little difference we just have to deal with what comes up. Getting additional diagnoses won't really solve the problem.
Medication can cause hallucinations even if it has not changed for years. The body does change and some meds can reach toxicity levels and cause hallucinations. The meds. need to be reviewed?
Next this is so much a situation where you need to speak to a specialist neurologist. Hopefully they will be able to give you an explanation and possibly something to diminish them.
It sounds as if you are facing some 'hostility' too. (?) That too can be a symptom, usually one associated with CBD. Again a good neurologist should be able to help with that.
Lastly, there are a few folk on here that have reported hallucinations. But most often the person isn't so troubled by them. They're not as alarming as gig spiders and they are usually transient. That is they often appear one day and not the next.
Adding there appear to be some delusional thoughts too. Thinking he has been hit. This actually builds into a possible picture of a psychotic episode. I really think an urgent appointment with a neurologist is in order. Forgive me for being so bold here, but I used to work in mental health as a practitioner.
A side note. It sounds like he's putting you folk under lot of pressure. It's not shameful not to be able to cope some days. Most of us here have been there on that one. However do please make sure you are getting enough practical support in.
Kevin, we were able to get his meds adjusted. Thank you for the suggestion. I went straight down to the pharmacist who also agreed and was concerned because two of his meds could have elevated his ammonia levels. The hallucinations seem to have stopped. What is CBD? I can't remember. I will look that up. You are wonderful. Thank you for your help.
Dad, CBD, has had hallucinations, some caused by medicine but some weren't. He never has been hostile though. Some examples are trash on the floor, a man standing in bedroom doorway talking to him, bugs crawling on the walls (medicine related), a wolf running around, nursing home wall got knocked down, curtains on fire... those are the ones I remember. The TV is always on and I have often wondered if he isn't half asleep and what he sees/hears on TV becomes partly his version of reality.
A few of the hallucinations he described in great detail, when he could speak decently, especially the man in the doorway.
Spot on, Dadshelper, re wondering whether what your dad sees on TV becomes his version of reality. I have exactly the same with my husband, (PSP) which on most days can set off great agitation with him. So a news item, say from a war zone, will have him yelling that we have to leave the house NOW as we are in grave danger. Sometimes talking it through very calmly with him will ease the situation, other times it won't and I have to ride it out until he calms down. The strange thing is, he can watch a film that may contain violence and not flinch, but I think I have worked out that if it's something he has seen before it won't agitate him as he has firm memories of it but if it's a current news item then he won't be able to process, in the moment, that it's not the reality. There is an amusing side to it though, during the recent World Cup he was convinced he was a player, regardless of which teams were playing, and with my heart in my mouth he would shuffle around the room with an imaginary ball, wobbling like a skittle about to fall. Needless to say I stopped him from falling but before he was able to do himself some real damage I was able to convince him he had to come off the field due to injury. I was thankful he wasn't playing in goal as I suspect he would have been throwing himself all over the place. If I didn't manage to find some humour in all of this I think I would have given up a long time ago. In his world, he was also a contestant on Strictly Come Dancing (UK Ballroom Dancing competition). Again, I endured his shuffling around to the Agentinian Tango with my heart beating so loudly that I am sure others would have heard it. On telling my son about it he suggested I tell my husband that the public had voted him off so he didn't have to dance again - he accepted that graciously. So here we are, another day, another challenge! Best wishes. HilsandR
Honestly Jean, you couldn't make it up. It does beg the question though, do I ban him from watching rugby or risk ending up on the floor with him - all those tackles and scrums? You sound like you have a great sense of humour, Jean, and like you that humour has saved me from crumbling on many occasions. Interestingly, we have some friends who we were pretty much in competition with as to who could send the funniest greeting cards, especially relating to events in our lives, some of which had to be home made to capture a particular moment. Well, after R's diagnosis those fun cards from these particular friends were replaced by much more standard, high street greetings cards, with a message that they thought it more appropriate under the circumstances. I did get it that perhaps they were trying to be sensitive to our emotions but soon put them right on it and said if they were happy to spend the ridiculous money on postage stamps then at least make the cards fun. Needless to say we are back to the old regime. Just one thing in a single day that makes me smile, better still laugh out loud, is priceless. Best wishes Jean and keep laughing out loud. HilsandR
I so agree. Some might see our humour as black but it often saved my sanity. Sadly Chris has died but I am glad we still shared laughs in terrible circumstances., often to the amazement of officials
Your situation seems worse but it's the only way to cope. Good luck.
Hi Jean, if I were ever able to get the R that I once knew back to his old self he would love my tales of some of his antics, he was at the front of the queue when humour and laughter was given out and our house would be filled once again with his infectious laugh. Yes, some may think this is black humour but if the odd occasion as I have described lifts me out of a black mood then so be it. Tears of laughter makes a refreshing change from tears of despair and I would never openly laugh at him - you are so right - it's the only way to cope. I know that you must still be on your journey of grieving but I hope that the laughs you shared with Charles will bring you comfort, if not right now but in the future. Hils.
You know Dee if I had not not been blessed with a good sense of humour I would have given up on this hideous journey a long time ago. I could never have guessed that we would be faced with something like this in the years that we should now be enjoying. It has amazed me that I am stronger than I ever could have imagined but amongst the down moments (my husband has been hit really badly cognitively, with all the challenges that brings) so a touch of humour here and there definitely keeps me afloat. Keep smiling. HilsandR
And for what it's worth Hils, now that my journey is over, knowing I stuck it out and saw him through, by his side to the very end, is my biggest consolation. 🌈
I am not there yet Anne but I can imagine that being able to see it through must be a huge consolation, "in sickness and in health" though not to say that your grief is no less than anyone else. I am sure it catches you unaware at times as such early days for you but I do admire your strength of character in that you are still giving your time for others on this site. I am really struggling at the moment with R's behaviour. Neurologist is weaning him off the Donepezil which as far as I can tell never improved him in any way and I even wonder whether these are now contributing to his aggression. We will see once he is off them and out of his system completely but on the other hand it could just be disease progression. Meantime I will carry on as usual and hope it doesn't get beyond what I can reasonably cope with. I am very blessed with 2 great kids who call in regularly and pitch in to keep me sane, so I do have a lot to be thankful for as I know there are many on this site coping pretty much alone. Oh well, tomorrow's another day and what happens tomorrow will get dealt with tomorrow. Best wishes, Hils.
Oh my husband has had similar types of hallucinations. The car crashing, fire, blood, a man standing beside him talking to him, bugs on his legs, and others. The bugs were a med side effect but the other was in the beginning and happened even without meds.
Larry has had a few hallucinations but he is still aware they aren’t real. Yesterday I went out to run some errand for an hour and a half. Getting home he told me he hadn’t had any French fries. I asked him where he would have gotten French fries. He pointed at the TV. I let it slide.
I’m also the whipping boy for his anger when it flares. I’m useless. It’s all my fault. Whatever. I exersce to get an endorphin fix. It helps. Diazepam is a good idea as well.
I am so sorry. I wish I could help but I have no experience of this happening. How old is your son? This is so hard for all of you. Maybe scary for your little boy too? Have you got anyone else to come in and help? Can you get carers or would you have to pay for that? You certainly need someone to help, even without hallucinations like that!
Even if we don't have the answer have you looked at PSPA website? Maybe an email to them to ask the question? Just a thought.
Mum has CBD and frontal lobe issues. I'd say she has laps over into other conditions too, I think many people do on the neurological front.
Mum used to hallucinate when she had an infection, used to be one of my signs something was going on before a temperature broke. Now she is advanced stages she has hallucinations without infections. Spiders have been quite frequent for her but she is scared of them anyway so it is a fear of hers.
I'd get a med review as suggested above and check for any infection.
Their reasoning ability deminishes so trying to tell them something ,that isn't what they believe to be real can cause them distress and become agitated. Just reassure they are safe and you will sort it out for them. I've gone round the room before now saying I've got rid of them all and sprayed all the corners. Mum is also on diazepam to help with her spasms but this also helps keep her calm, she is only on a tiny dose but it helps.
Shelly my heart goes out to you especially as you have a young family - life certainly can deal out some pretty cruel stuff. My husband has exhibited hallucinations and delusions from early on post diagnosis. The hallucinations are not bothersome to him and as long as I lead elephants, etc from the room his room he is happy. The delusional stuff is quite different and has recently led to some aggression, directed at me, which I am currently in consultation with neurologist and GP over in regard to where we go from here. Antipsychotics have been mentioned but to be honest as long as there is no physical violence I would rather ride things out than turn him into a zombie, which would make my life and his so much harder, I suspect. I am happy to PM you with the full scenario if you think it might help. We all seem to be living 'in the moment' dreading what might come up in the next 5 minutes. It's ridiculously hard but try to keep smiling. HilsandR
I have found this symptom among my notes for cases of PSP-RD with more than 6 years:
- Little eye movement; can not 'look' at something; slow to focus on things in view. delusions, hallucinations at times; may be disoriented and not know where they are. Hallucinations may be related to infections in the urine.
Are you using analgesic opioids?
In our case we have some side effects such as confusion and daze, especially with opioids.
Because it is such a serious area I would like to try to bring this together. (My background is psychiatry not neurology so the 'reasons' for the different presentations are minimal - beyond my knowledge area. And, I am not a doctor.
Confused or mistaken beliefs:
My mother had very mild alzheimer's with slightly weakened reasoning. She was very tired a lot of the time and would doze and dream with the TV on. As other's here described she would somehow mash these things together and say things like, " Has that lovely little girl gone home now? I do hope she found her Mum and Dad." She thought she had been sitting and chatting with a lost little girl. This is, as so well described above, just a confused mixing of 'input' brought together in a way which makes sense.
Hallucinations
Simply seeing things which are not there. Most people who report them here seem to describe hallucinations which aren't frightening and which are transient. This appears to be consequent of the degeneration of the brain. However they can be caused by medication too and should be checked by the prescribing doctor. Additionally they can be caused by high fever, but that's fairly easy to spot.
Psychotic episodes
These can be both very serious and usually very distressing to the patient. They are marked with an intensity of experience not found in other cases above. They are often marked with hallucinations, delusions and frequently a lot of fear (paranoia). The hallucinations might be visual or tactile. Tactile is where the person feels something crawling on their skin, or a sensation of the skin burning or whatever.
The delusions are as described above too, except they are often more intensely experienced and they usually are of a distressing nature.
Paranoia, or fear: Is not always present, but when it is it colours the hallucinations and the delusions. The hallucinations can be frightening and the delusions involve threatening things or fearful events. It is a terrible place to be in your mind. Calming the person and talking softly to them can help to draw them out of the moment and give them some temporary reprieve, but it does little to shift the understanding or dissolve the psychotic episode.
These psychotic episodes can be brief but tend to repeat regularly, or they can be more persistent.
They may be caused by degeneration in the brain as we find in Alzheimer's, they can be caused my medication too. In the case of medication it may be that the medication has not been changed, but the body has and now they are causing problems. They can also be caused by chemical, or hormonal imbalances in the body or brain and so are 'warning' that other areas of concern need to be addressed.
It's really important that the neurologist is consulted in this case.
I hope this is a little helpful, it's just a working sketch.
Yes! G had exactly the same problem, there was no point me denying that they were there or that they didn’t exist, they were very real in her eyes, particularly at about 4am when I was just drifting off to sleep. I found the easiest and on,y way to deal with them was to make a show of me catching said spiders, she would then go back off to sleep happily in the knowledge that the spiders had been taken care of.
Funny, I cursed those blasted spiders and often thought I wouldn’t have to put up with them for much longer, but oh how I miss those nights now G is no longer alive.
It turned out to be one of her medications, having just destroyed a repeat prescription of hers last week, I can’t remember what the culprit was, but would if you listed some.
Sorry I can’t help more, but I do know what you are going through.
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Losing a loved one to PSP
where do you see yourselves
Went to see the GP again yesterday Re Mom
Very happy to see you all 
Hooray! The hoist has finally arrived.
