He's hallucinating today

ButterflyWings

Boy does AD keep us on our toes.  DH just started telling me there's somebody moving around in the next room and he doesn't know what they think they're doing. I first tried the "oh we are the only ones here in the house now sweetheart" and thought he let it go. He was just humoring me.

So, when he said he'd be calling the police if we have to, I walked him into the next room to show him there's nobody there and declared "they are gone now...I showed them out and locked the door...alarm is on so we will know if anyone else wants to come visit". 

Then we switched rooms to sit with a nice view outside. I fixed his lunch and hoped that might distract. Started off good -- we were eating and chatting every so often. After a few minutes silly me thought everything was back to "normal"...

Until he started talking to whomever or whatever he sees in the other recliner (nothing's there). Waved his hand suddenly and shouted "Don't you do it, get back over there!". I asked who he was talking to. He said it's that little animal that comes out from under the chair every so often. (I know there's no such thing, but actually had me looking for a minute, thinking hmm... but no, the squirrels or chipmunks are only outside. And we haven't had a dog for years). Sigh. Its' going to be one of those days or weeks. 

Follow up lunchtime commentary - very random: "Who died?" (blank look from me). "Huh?", I asked. "Why is the radio on then?" is his response.

I'm lost folks. Just lost here. Not sure what will come up next! I think I'm ready for it though (I hope). He hasn't missed any meds. So, I have no idea what triggered this, but waiting for the other shoe to drop. Or hopefully I can get him to take a nap soon and he will wake up back at baseline. Will keep you posted!

SusanB-dil

oh my!  ((hugs))

M1

Oh BW, hope it doesn't escalate.  Visual hallucinations can be from a lot of sources, but auditory are always psychogenic, so it's said.  Drugs don't make people hear voices.

Matter of judgement about calling his docs I imagine.  Keep us posted....

Wild-West

Ahh, BW, I'm sorry it's that kind of a day. My mom has terrible delusions and hallucinations too, and barring the UTI thing, I can never understand what sets them off. She broke 6 ribs from a fall a couple of years ago when she was trying to see the people who were living under her bed. The only silver lining in the trauma was that after the fall she told me they'd gotten jobs elsewhere and moved, so she didn't need to check on them anymore.

ButterflyWings

Thanks you all. So far, he is relatively matter of fact about it thank goodness.

Susan - I know!

M1 - I hadn't thought about it but yes, he was also having auditory hallucinations the last couple of days before this. I thought he was just mis-hearing maybe, I've been so focused on his breathing and wheezing and also making the changes due to coming off hospice. He's asked me about if I heard someone talking and could I hear what they said. I explained it is the radio -- narration on the jazz station (I really thought that's what he was hearing), but recall now that he also "heard" someone calling his name when there was no other noise in the house.

Also changes yesterday and today -- he's had word salad episodes...mixed in with some basic weird convos (as I type this he was just telling me about the "visuable ponage", and that I might "end up in there with a few buffalos" (? lol), "and maybe they'll give him a new house up there". Now he wants to know "where's what-cha-ma-call-it?" I asked who and he said she was sitting over there. Then she went to get his milk (well no, he doesn't drink milk but anyway.). The "where'd she go?" kind of talk happens often since he thinks there's more than 1 of me. This seems a little different though. I'll keep watching and hope that this is just progression or an off day. 

Wild-West - 6 ribs ouch! Brilliant recovery in terms of what she came up with for them leaving though. Reminds me of a dear friend who we lost years ago to colon cancer (not even 45 yrs old, it was just a terrible blow to her family, DH and young children, and our community.) But she had a sense of humor til the end and I remember her being on some super heavy meds and when I asked how she was doing (dumb question I know), she had been kept up all night by the little dog under her bed, that wouldn't stop barking (at the state-of-the-art research hospital's cancer pavilion i.e., no dog yapping of course). Her sweet answer to my dumb question was to share a bit about her journey and how she just wanted to be at home having accepted that palliative care was the most she could expect at that late stage. In sharing that the med-induced yapping dog prevented any rest, she said -- "well at least he didn't bite me!" 

I am going to keep my own sense of humor on this AD journey as long as I can. It helps. Thank you all for being here. Glad we all have each other to share the things others from the general population would never believe.

Mint

Butterfly sorry to hear that challenging is becoming more challenging.

JJAz

Visual, auditory, tactile or olfactory hallucinations combined with dementia are significant indicators of Lewy Body Dementia.  It's similar to Alzheimer's and is often misdiagnosed.  It needs to be diagnosed properly because there are medications that should NOT be taken by an LBD patient. This link will give more information.

https://www.lbda.org/symptoms/

Jo C.

JJAzz is absolutely spot on regarding having LBD ruled out.  It is not unusual to have a misdiagosis for type of dementia until things begin to evolve.  This is something that would benefit from a dementia specialist examination.   If it is LBD, JJAzz is giving good information.  LBD patients cannot be prescribed some meds used in other dementias as they can be very deleterious and make things worse.

Check it out for safety's sake and for his sake; he suffers when he sees and hears things that sound dangerous or threatening; it is a reality to him and he needs relief from that as much as can be possible

J.

ButterflyWings

JJAz and Jo C - thank you for this alert. I value your judgement and will find a way to look into it. We know he has Alz for sure due to the spinal tap which he was proactive about after initial MCI diagnosis, when things continued to progress.

Interesting that we saw a new nurse today and after evaluating him she mentioned he might have mixed dementia. This was based on some of the things I reported plus her own observations and exam (tremor, etc.?). She did say she thought he might also have FTD or Lewy Body Dementia as well as AD. (New nurse because he was readmitted to hospice - will update in another post). 

I will see if his PCP will pursue additional referrals to pin down if his diagnosis has changed since even though he is terminal either way - and now on hospice care - you make an important point that we still need to know so the meds don't do more harm than good. Or maybe it is the neuropsych who I can connect with directly now that I think about it. Will start there.

He's been hallucinating for a long time, and the last time I mentioned it his (prior) hospice nurse suggested it might just be floaters as in, vision issues & that I shouldn't take his description of the red bird that flew through the room, literally. Though he was seeing other things that were stationary - lots of trees over in the corner, a dog on the bed, etc. And still having occasional auditory hallucinations. I won't say she blew me off, but it was definitely not the same level of evaluation and insight that the new team is bringing right off the bat. Maybe you just need fresh eyes on a situation, and PWD, sometimes.

Thanks so much for the heads up.