At a Loss - LO in AL Thinks People are Stealing from Her

It’s a Dry Heat

Hello all,

This is really long, but I am seeking feedback from those caregivers who have supported their LOs with sundowning.. My LO is in assisted living and has begun exhibiting severe sundowning issues. She insists that someone is coming into her apartment and stealing items while she sleeps. Of course, no one is stealing anything, she’s just moving things around and forgetting where she moved them. She called me today to report the latest incident and was so frantic she could barely speak. 

She just moved here from a different state in October of 2021 where she was in independent living with home health in a different state. While my sister was helping to pack her up, this behavior began. It escalated quickly and she was sent to the ER twice within a week for delirium because she’d gotten so worked up about people stealing her things or trying to break into her apartment. When she moved here she stayed with my husband and I while we waited for the movers to bring her things. When they arrived, we took turns going to her place to unpack, set up, and clean the apartment so she wouldn’t experience any episodes. She moved in and was happy, although it did take a good two months for her to feel comfortable. The stealing/breaking in paranoia started within the past two or three weeks. She does have caregivers come in to give her meds twice a day and bring her meals. On occasion they will check in on her to see how she’s doing. They’re all so kind and she is nice to them, so I’m not sure where this is coming from.

Has anyone had experience with this and what did you do? I called her neurologist to see if we could adjust or add meds, she’s already on quetiapine for hallucinations (she thought she was seeing people outside of her apartment getting ready to break in). What has helped your LOs? This is becoming exhausting for me both mentally and physically. The folks at AL have been great with her, but she is adamant she wants to leave which is not an option. I’m worried that the continued belief that people are stealing from her will result in either a quicker decline in her mental state or a physical reaction. I am searching for answers to try to help her feel comfortable in her environment. Thanks in advance!!

Palentini

 Hello, I feel like I’m going through something similar. My mom is having a hallucination that somebody came in and replaced all her lightbulbs with less powerful ones. 

And forgive me if you’ve done this already, but what seemed to work today was just listening to her and reassuring her and just going off what she saying. She even had Xcel energy come out to the house to check the lights. 

Now she thinks that her homemaker replaced all her lightbulbs. So when they discovered that the wattage of the lightbulbs were not the highest, I was like oh well maybe those were the light bulbs my brother brought over. And you know the power company is pushing these energy efficient lightbulbs so they’re not as strong as what they used to be. And I’ve promised to find more powerful lightbulbs.

And luckily that sort of clicked with her. Now I have to go and find hundred watt lightbulbs but she is calmer about it now. I think the key is to help her find the explanation that makes sense to her .

 And just be reassuring don’t tell her she’s wrong, steer her away from thinking bad thoughts about her helpers. Because they are special people that we need to rely on. I usually say, well you tell me that Luke is really wonderful so try to be kind.

I can only imagine what’s going on in her brain, and just realize she doesn’t want to feel the way she’s feeling. And somehow this anxiety is coming out of what’s going on in her brain with her Alzheimer’s condition. So reassurance and finding some kind of solution that you can accomplish should help. 

But also look for physical causes, I found that these hallucinations can proceed a UTI. Or she’s just hungry, or just needs that reassurance to help quell whatever is going on in her brain. I wish you well and I hope it works out for you

Jo C.

This really is a challenge that will take some detective work to see what may be causing the abrupt change.  First things that come to mind would be that of a "silent" UTI.   That can happen with no overt physical symptoms except significant changes in behavior.    It would also be good to in-person, check with the person who manages dispensing the meds.  Check the med record to see if she is getting the Seroquel each day at the times prescribed or whether some dispensing has been missing.  If a patient refuses to take a med or meds, they cannot be forced.

Also check the med list to see if she has any "as needed" (prn) meds and if she has been given any.  Then check online for side effects.

She has only been in her new setting for a bit over three months; that was quite a move; change is the enemy of many persons who have dementia.  She is also rather isolated in her apartment which may contribute to what is happening. Is she at the right level of care for her needs is another consideration. Does she feel secure and cared for or is she feeling at risk.  

A bit of detecting would be helpful.  If she is lonely with isolation, perhaps hiring a "companion" to come in at least several days a week for a few hours each day would be helpful. 

Let us know how she is doing, so hope all will soon improve.

J.

harshedbuzz

It’s a Dry Heat wrote: The stealing/breaking in paranoia started within the past two or three weeks. She does have caregivers come in to give her meds twice a day and bring her meals. On occasion they will check in on her to see how she’s doing. They’re all so kind and she is nice to them, so I’m not sure where this is coming from.


A couple of thoughts on this. 

Firstly, most AL and MCF settings are legally required to provide locks for their residents. In many places, dad's included, the doors will automatically lock when the resident leaves the room, if a resident leaves their door open or ajar, other residents with dementia who are in the "hunting and gathering phase" may be indulging in a bit of "shopping". This is a very common behavior in facilities where PWD enter each other's rooms and take things. Dad's room was at the end of the hall nearest the central social hub; he liked to keep his door open and had random folks entering his room constantly. There was one gentleman who swiped a framed picture of my mom nearly every day and others who took glasses, slippers and even used the bathroom while there. 

TL;DR- there may be some truth to what she's saying.

Dad was not so much distressed by the stuff missing, but he was greatly annoyed by those residents who came into his room and just kind of looked around. But not so much that he would shut his door. 

Related to the bolded- your mom sounds like she is in a hospitality-model AL which is not sufficient for a PWD. A higher acuity MCF with dementia-informed staff and routines would be a more appropriate level of care for a person who sundowns and has hallucinations. This kind of setting would include hourly checks and a full day program of activities focused on keeping her busy and engaged. Care-level needs to be set to the needs of your LO at their worst which can be a difficult decision to make as it means her community will include people who are further in the disease progression as well as the additional expense of such a setting.

HB