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Your profile mentions UTIs. When I first joined this forum, there were many times others suggested testing for UTIs when some new/odd behavior began. Initially I was skeptical, but mom's first UTI after moving into MC resulted in severe sun-downing every afternoon. She would insist she needed to get out, go home, had guests coming and proceed to try every door to get out, setting off the alarms. Of course this started on a Friday later afternoon, so no access to doc until Monday (lucky for all of us she had an appt that morning!) She had to take an anti-anxiety pill in the afternoon, minimal dose, just enough to take the edge off, until the UTI was gone, about a week.
She used to get UTIs several times/year when living on her own, but would know and get treatment for them. With dementia, it manifests in odd ways. The second and third episodes resulted in night time bed wetting! When I received this month's billing, I noted 8 extra loads of laundry, which is the key to knowing! Since I can't be there and don't know about these "extra" charges until the bill arrives, I was a bit miffed. Billing charges are tallied mid-month, so I KNOW there will be additional charges next month, since this wasn't addressed this time until I brought it up, April 30! I am waiting for a reply as to why this was not noticed and nipped in the bud, rather than letting it go until I noticed it. This isn't good for anyone - extra work for them, bad for mom!
You could try a home test, just to rule it out (although sometimes it takes a culture to find.) They should have a way for you to collect a sample for testing - just be sure to get it to the doc/lab asap (you say she won't go to doc, so this might be the way to deal with testing.)
If no evidence of a UTI, rule out medication changes or reaction to long-used medications. A pharmacist can answer some questions about what one might expect as reactions.
Last resort is to consider this part of the dementia. An anti-anxiety taken a while before this behavior starts (is it all day every day, or just certain times of the day?) Since my mother lived alone during the early stages, we were not there to observe any oddities like this. However, while trying to keep her in her own place and bring in aides (we started with the minimum 1 hr, just to check on her and have them make sure she took her meds), we also installed some cameras. What those eventually revealed was what I call her version of sun-downing. Just before bed, she would check the door lock, sidelights, something in the kitchen area and then the LR. The camera couldn't see that far into the kitchen or any of the LR. Since there was a pass-thru window to the dining area, the light would reflect into the kitchen. It took having one brother there to figure out she was checking the dishwasher (out of camera range.) Sometimes she would even "sneak up" on the sidelights, like she expected the boogeyman out there! This began as a couple of iterations a few times/week and morphed into nightly marathons, 1-1.5 hours, over and over and over!
Tripping the camera and getting notices over and over was annoying, but OB tried to call her and get her to go to bed. She'd say she was going, but there were at least 3-4 iterations more, and once she told him he got her out of bed (he didn't - could see on camera.) I had to suggest he turn the sound off on his phone, because calling didn't work - she had NO clue she was doing this! Since short-term memory usually goes first with many forms of dementia, it makes sense they wouldn't remember (and yes, these "trips" or things she says/does can be forgotten in an instant! It doesn't take 5-10-15-20 minutes!)
Rule out the UTI. Then rule out meds. If nothing, then consider asking doc for anti-anxiety - minimal dose enough to calm
1. Eliminate all scented products. Example, are you diffusing "essential oils" anywhere nearby? "Essential oils" are neurological agitators and irritants to many, and cause the behaviors that you describe. Glade room scent products are irritants to many.
2. Look into her meds. Is she consuming any meds or OTC medicines? A Medication might be causing those affects, if she is using meds that worked when younger, those formerly okay meds might be adversely affecting her, since nothing is metabolized as well as when we were younger.
3. Unknown allergies to food. The book "It's not Mental," describes food as causing neurological irritations/responses/behaviors that fit your descriptions.
4. Neurological eval CT scan, to get a physical picture of what's happening, Guessing based on symptoms is an outdated method of diagnosing.
The article above has some good tips.
If this is a new behavior, think about getting her tested for a Urinary Tract Infection.
Can you do a telemed appointment with her doctor?