PSP Association
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Forgotten faces

My husband's ability to recognize faces is really getting worse. There are times when he seems to be very lucid and mouths lengthy conversations. I am getting better at lip reading. But last night he didn't know who our little boy was and was sure he was there to kill him and he wanted me to call the police. I am so glad he is mute and my son didn't hear all those words.

I am starting to wonder more and more if this is Alzheimers or Lewy Body. Did any of you have these experiences?

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Symptoms of neurological diseases can overlap.

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Shelly, I was reading your original post from 2 years ago: you had a nightmare time with doctors who just didn't seem to want to get you a neurologist referral or diagnosis. Did you ever actually get a working diagnosis from anyone?

I am not expert/qualified enough to know, I can only parrot what I'm reading on other sites and by more experienced people on this site: While cognitive loss and even some (what is called) front-temporal symptoms (lack of inhibition etc) can show up in PSP & CBD patients, what I read is hallucinations and delusions are NOT part of PSP or CBD. I can see why you are wondering about Prion disease or Demential with Lewy Bodies... ??

Is your husband still at home? or being cared for by professionals? If he is having delusions and you have young children, you must be very worried?

I wish I knew more to help you :-( Can only send a hug for now XXX

Anne G.

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I have an appointment for him, as of this morning, for a specialist in Alzheimers and aging. It's not until mid/late August but it's better than the 6-9 months we usually have to wait.

I am very concerned about this sudden worsening. The kids and I gathered this morning to discuss things and they are all very understanding, but this was a bit startling.

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Hugs to you Shelly - I'll follow your reports with love and concern XX AG

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Thank you AG. 💗💗

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Hi Shelly, my husband was diagnosed with PSP in 2015 and delusions and hallucinations have played quite a role in his symptoms, even before he was on any medication so we know not drug induced. I have been saying for a long time that I am sure there is a lap over of diseases and certainly a lot of my husbands symptoms mimic Lewybody dementia. Sorry to say, the experts just don't know. I read in the paper this morning that dementia research is 40 years behind advances on cancer. Currently, we are going through a very challenging stage of behaviour, combative at times, and I am in discussions with the medical people at the moment as to best way forward to calm things down - not holding my breath to be honest - just gonna struggle on. Best wishes, HilsandR

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Sadly, your two stories sound very similar. It makes me just ache for you Hils (and Shelly) as dealing with PSP and CBD is bad enough - and the doctors are mystified enough - without a case of overlapping symptoms. You must feel so alone and in the dark when the doctors can't help :-(

Your posts and "evidence" on this site, however, are worth gold to the others struggling in the same void. One thing I've learned recently, if I didn't know it before, is how many people are reading and needing the information we post here - even if they never post themselves. Thank you and please keep posting updates.

Big Hugs to you Both XXX

Anne G.

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Hi Anne, thank you - how are you doing? You've been in my thoughts.

What a pity the so called experts don't log on to this site. They might just find some valuable information that would fit pieces into the jigsaw of any current research because as we all know, there's not a one size fits all to these diseases, including time frame to first symptoms. Sadly though, as I said earlier, dementia is 40 years behind advances in cancer so what hope do we have but to soldier on and do the best we can. Best wishes, HilsandR.

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You're right about the research Hils. Perhaps the best we can do is let PSP Assoc know about our experience: they seem to be a caring and somewhat progressive organization. There's certainly nothing like it in my country.

And thank you, I'm doing as well as anyone in my place could do. Possibly better :-)

Xx. A.G.

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Pardon me if this is a repeat but I do not recall whether or not your husband had a DatScan I'm having trouble getting the neurologist to order one for my husband. He's got 5 diagnoses: Parkinsons, Parkinsonism, Lewy Body dementia, PSP and Parkinson's dementia and for some reason she won't order it but my primary care physician wants to see one done and I believe I would too. Any information is helpful; thank you!

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What does the neurologist say is her reason for no dat scan?? Doesn't sound consistent with others' experience here....

🤔

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I dont recall but wrote her last week for explanation to take to PCP. She is out of office. I am not going back to her. I feel like she is using hubby as a guinea pig.

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Doctors are so frustrating. I am so sorry you have to deal with that Boyce. How can he be diagnosed with all of those things?

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Diagnoses from 3 neurologists 2 Primary Care

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I have no idea. I was told by someone that he already had an MRI and if I demanded a catscan, I would need to find another neurologist and she got up and left the room.

Would a catscan show different things than an MRI?

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Could experts log onto this site?

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Thank you Anne G. for your sweet words. We all are on quite an unfavorable adventure. 💙💙 At least we have eachother in these crazy times.

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Dear Hilsand R.

Combative stage? That sounds horrible. I am so sorry. You actually are such an awesome person. I agree that so much is unknown and it's hard to predict how this illness is going to evolve next.

Definitely not a stage I am looking forward to. How do you keep it together? Sometimes my husband gets really upset with me because he thinks I am trying to trick him or I am lying and trying to make him upset. Those times are rough but don't usually last very long. Not yet, at least. Hang in there. ❤

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Hi Shelly, you ask how I keep it together - the truth is I don't know. I guess like everyone on here we don't have a choice so somehow get through each day. I have just been through the challenge of getting my husband into bed - I dread it - it seems to exacerbate any agitation that was already there and no amount of reasoning with him helps. I do understand that in his mind he thinks he can manage, which sadly he can't, so he can't get his head around why I am trying to undress him. If I walk away and suggest he does it if it makes him feel more comfortable, when I return 5 minutes later he'll be sitting there fully clothed and so the whole scenario starts again. TV is a nightmare as will always set him off because he cannot differentiate that from our life and will often start banging on the window shouting for the police and shrieks at me when I won't call them. Sometimes this lasts for a few minutes or can go on for hours. He does remember some of his behaviour and apologises and says he doesn't know why it happens - heartbreaking. Strangely, the mornings are relatively calm but then he is asleep most of the time. It's so hard, isn't it, and only those living with it can fully understand the daily challenges. Friends, however often they visit, just don't seem to get it. Well, I made those vows 46 years ago so gotta see it through best I can. You hang in there, too. I think we are all stronger than we could have ever guessed. HilsandR

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Your comment on vows struck a chord Hils; I thought different times of that while I was caring for hubby, and quite apart from love (which I certainly felt) the sense of "vows" was deeply important to me. It helped carry me through. Now that it's all over, that sense of having done my best by my vows is helping sustain me.

XXX

Anne G.

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What a nightmare Hils. 😢

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Tonight, it's 2:30 am and we started trying to get him to bed at 1. It's such an ordeal, but tonight he forgot who I was and tried to leave the bathroom on his own to get away from me and fell. Then our 12 yr old daughter and I managed to get him into bed. Then he started digging into his face with his nails. So we tried to restrain him for quite some time. I thought I would try a sock on his hand, but that freaked him out, his head arched upward and his whole body went rigid. So we rubbed his neck and arms and legs until he calmed down and he started up with the gouging. I didn't realize that was a thing. Anyway, he finally nodded off. I really feel your pain. XX💔 I almost called the medics because this is so weird and new. He started the gouging two weeks ago but not often or on his face. Now the past two days he's digging or biting the skin on his upper arm, or his hands.You will be in my thoughts.

Shelly

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"Forgetting faces" in this case is delusional thinking. Delusions are part of Lewy body dementia and frontotemporal dementia. (Delusions can also be part of Alzheimer's but that's after someone has had AD for a long time.) The "face gouging" also sounds a bit like frontotemporal dementia.

Can you afford facility placement?

Are you and your children safe at home with your husband?

If you go to the hospital emergency room with your husband, would you be able to see a neurologist or psychiatrist sooner?

Can you identify any triggers for these delusions?

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There are no clear triggers rriddle and I am more worried about him. The whole day was ok. He had just been smiling with the kids while they played "read my lips" with him. They would try to move their lips and see if he could understand. He may have gotten a bit tired from trying to concentrate, but it's scary. If he doesn't know me, and I can't calm him, I do think having him taken to the hospital might help. Maybe. But I do wish I could have him seen by someone other that this neurologist we have right now.

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Maybe like Robin's saying, if you could get him to an ER during an episode you'd get different professionals assessing him? Not sure if you're in a small town with only one neurologist....

Or I wonder if CurePSP would have any ideas? (You're in US, right?)

Hugs, anyway!! XXX

A.G.

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And homes are very expensive. He hasn't qualified for SS. His hearing was postponed because he can't communicate and while we were there he thought he was at the doctors office and wanted his doctor and they wouldn't let me in the room with him and the judge. :(

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You and your children have to be safe.

In Lewy body dementia, there is something called "fluctuating cognition." One moment the person is delusional and the next moment the person is normal. I suggest you keep a log so the neurologist can read that.

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I am seeing that and have over the past couple years. But he is out of it almost as much or more than he is lucid this we

Because he is nonverbal and nonmobile and rarely leaves the couch except when we haul him to the toilet, he's not so much a danger to us, but to himself. He cries a lot.

Then he is himself again. You never know. He mostly just watches police chases on youtube, political news, and plays a video game on his cell for hours on end. Thank you all for the advice. I think I will try to contact the PSP foundation. I worry about the hospital but it might be good to have documentation.

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And a video on your phone would also be evidence....

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If you are in the UK, I'd contact the Lewy Body Society.

If your husband still has arm strength, he is a danger to you all.

Maybe he shouldn't be allowed to watch police chases?

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After reading about Hills husband, I agree. Something to think about. I am hoping to speak to the doctor today to get some ideas and resources. Thank you r

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