Mom’s gone off the deep end!
Mom’s had dementia for some time now and lives in a home. I knew it was time to move her there when she was getting lost in her own house, leaving food in the microwave for days, and no longer knew how to drive her car. But lately, things have gotten worse. She thinks there are little people living in a secret room (her closet) who steal her chocolates and move things around when she’s not looking. And she talks gibberish! I’m wondering how much of this can be addressed vs accepting it as the new, screwed-up normal. It’s more than a little unsettling, to both Mom AND me.
Dealing with hallucinations
The type of dementia most often associated with hallucinations is Lewy Body Dementia. You didn’t mention whether this was the type your mom has, but it’s also the type of dementia most often associated with the specific hallucination of “little people.” Even if your mom doesn’t have Lewy Body Dementia, hallucinations aren’t uncommon in other forms of the disease.
As the dementia progresses, a lot of things can happen that may lead to folks like your mom thinking little people are stealing or moving her stuff:
Someone is actually stealing or moving her stuff. Don’t rule this out. When my husband and I checked Mama into her first dementia home, she roomed temporarily with another resident who had a habit of taking things from cabinet drawers that weren’t “hers.” So Mama’s stuff DID go missing. Mama would also ferret away things like chocolates in the same drawer with her clean underwear, and occasionally, when she actually remembered she’d put them there, the staff would have emptied the drawer of chocolates and put the ones that hadn’t been half-eaten somewhere else. Now, was it little people? No. But Mama couldn’t see who did it, so in her mind they must have been very small, almost invisible. It made sense to her, and she created a story that fit the patchwork of facts she could string together with what mind she still had.
She’s forgotten where she put things. This happened all the time with Mama. I’d bring her chocolates, she’d take half a bite, and put whatever was uneaten in a place that made sense to her at the time. There was no real discernable logic to it, and I’d have to look everywhere. Eventually I’d find something she had stowed away, often in the strangest of places.
She moved something herself, but doesn’t notice or remember. This happened all the time with Mama. She’d put her drink glass down on the bedside table. Then she’d wander out to the kitchen to get another glass because she couldn’t find hers. It was right there in public sight!
She misinterprets or doesn’t recognize her surroundings. If the dementia home brings by a big, fluffy therapy dog for the patients to pet, don’t be surprised if Mom says they let in a BEAR, and that it was AS BIG AS A CAR. Mama used to do this sort of thing all the time.
She’s actually hallucinating. A lot of folks with dementia experience serious sleep problems, and that can lead to some pretty bizarre dreaming-while-awake. Urinary tract infections (UTIs) can also lead to hallucinations. In either case, it’s good to get Mom checked out to see whether she needs antibiotics or medications like Seroquel, Nuplazid, Aduhelm, Abilify, Risperdal, or other antipsychotics to calm the hallucinations.
Dealing with the behavior
Whether or not Mom’s hallucinating, you still have the behavior to deal with. Once you’ve had her checked out and she’s on the right meds, she may still connect the elements of her world together in bizarre ways. Sometimes it’s amusing; and sometimes, as you’ve noticed, it can be quite unsettling.
The first question to ask is: does whatever is going on seem to be agitating Mom? Or is it just her living in her own, private reality, one that doesn’t make sense to anyone else?
If Mom’s not agitated, consider “rolling with it.” If she says that a leprechaun named Jamie has told her that she shouldn’t eat Cheerios any more, conspire gleefully with her to eat Frosted Flakes instead. If she says the staff keep an invisible dog in the closet (probably the therapy animal they had brought in the week before), don’t try to get it all to make sense. If she’s eating, sort of sleeping, and seems happy, the last thing you want to do is reflect in your reactions just how unhinged you think she is.
Mom’s doing the best she can
Toward the end of my mom’s dementia, she no longer recognized some foods. She once complained that the staff was feeding her “grass” (salad), or “cold white soup” (breakfast cereal). I learned very quickly not to correct her, and just got out one of the warm cookies I’d gotten into the habit of bringing.
It took me a long while to realize that as Mama’s mental declined, there was still a person in there putting in her best effort to make sense of the world. It taught me to see the world more simplistically, perhaps a little more from her perspective, and to show patience and compassion rather than exasperation and fright.
The power of just being there
Once you’ve taken care of Mom’s health, gotten her meds adjusted, and made sure she’s comfortable and as happy as she can be—-elves, bears and all—-what remains is to just be.
I remember when I was a little girl that a lot of stuff didn’t make sense to me. The world was a strange place. Thunderstorms and dark places were scary, and I remembered climbing into my parents’ bed and trying very hard to tuck myself in at the edge. They weren’t actually doing anything—they were both asleep—but it felt good just for them to be there.
Now it’s your turn. Sit with Mom, enjoy dessert, and talk about how warm the sunshine feels on your faces. If nothing else, it’s a sharing moment of light and joy that will help the storm seem less scary to you both.
