What is normal progression?

My DH had a couple of delusions in the past couple of years, each last roughly a week. In Oct 2023, he had a sudden drop in cognition and also started a delusion about working in this place and assorted details that shifted and morphed over the months. Sometimes I was both living here in the house with him and appearing in this workplace. Oftentimes, the workplace is here in the house and he will get up in the morning and ask where everyone is. I go along with it to the best of my abilities - where is everyone? Well it’s Sat so that might be why no one’s around. His neuro NP said there’s no need to medicate him unless the delusions are causing anxiety etc. I just go along with it and reassure him if possible.

At the time the drop in cognition and delusions started, he also started to not recognize me. I did contact both his PCP and his neuro NP just in case this flagged an issue like maybe a UTI but everything was ok, just ALZ progression. If the delusions came along suddenly, you may want to check with his doc and see if you should have him checked for a UTI or other problem.

@LaneyG you got great feedback above. The silent UTI possibility is always something to check, if your LO has a sudden behavioral change to the negative side. It is usually the only sign for PWDs so even doctors sometimes don't suspect it. No burning or pain or odor usually, hence the silent urinary tract infection label. Ask for a culture, with the urine sample so the right antibiotic can be prescribed if so.

And HB is so on point about controlling (limiting) the things that go into your DH's declining brain in the first place. TV, radio, images, conversations all have a totally different impact on them and it lingers. Usually in our case it led to a delusion as DH tried to make sense of the "experience" even though his reality was not mine.

By late Stage 4, it was urgent for us to have medication help with his hallucinations (seeing and hearing things that weren't there and dangerous delusions (false beliefs) about intruders (he would weapon up with hammer, bat, pitchfork and butcher knife under the mattress!!!) He never felt or smelled things that were not there that I am aware of. Although I had another elderly relative that did experience olfactory (I think that's the label for the hallucinating odors. She had vivid descriptions of the favorite foods cooking, that she could smell as she neared 100 years old. Nothing on the stove, but she was certain it was!

My DH is very triggered by anything on the news, even the radio and movies other than Hallmark. Thank heavens for Hallmark! I end up listening to anything I want to hear via my air pods, hidden under my hair. The hard thing is that even phone conversations with my children or friends or my 92 year old mom, can also cause him to become extremely upset or agitated. I actually feel like I'm living a shadow life, trying to shield him form any stimuli that will trigger something. Walking helps - and his doctor is thinking about trying some different meds but at this point is hesitant (?) to do so. He is only 68 and doesn't need/take any medications so not sure what she is "waiting" for. My adult kids are worried as our world is increasingly shrinking and the anxiety is definitely constant for me. I went through this dementia journey with my Dad and it was soo different - he had anxiety and didn't like to be alone, but none of the agitation, etc. It truly is different for everyone who is unlucky enough to experience it - and so very different for caregivers depending on the way it impacts your LO.

Of late, DW asks whether the drama we're watching on TV is real or fiction. I don't know what difference it makes to her, but real events, real tragedies, seem mildly upsetting.

Delusions are unstable, at least with my DW; so I try not to interrogate them, nor interact with them. Of course my automatic response is to reassure her, but it’s more effective to divert, with affectionate gestures. It’s hard, but these delusions are not worth engaging.

Tyrone