Being a caregiver to a person with dementia (PwD) can be particularly frustrating in situations where they are stressed out or confused by something, but can no longer articulate the problem.
While it’s a good idea in general to assume your PwD is an unreliable narrator, as their day-to-day experience is often quite different from reality, if a recurring issue keeps upsetting them or causing meltdowns, you have to go into detective mode to figure out what’s really happening.
During my sister’s illness, members of Team Peggy had some successes getting to the bottom of what initially seemed like really mysterious situations—missing items, her sudden aversions to certain people or locations, new fears of seemingly benign things. But there were a few times when we tried our best to figure things out and still weren’t sure what really went down.
One such situation occurred a few months or so before Peggy’s hallucinations and delusions started making more regular, disruptive appearances.
Back in June, 2022 Peggy starting talking to her friend Dodie and me about an older woman who she said comes into her room, uses the bathroom, and then leaves a mess that she has to clean up. We were skeptical, especially the “cleaning up” part of the story. But it was a mystery! For weeks, Peggy continued to talk about this with Dodie every time they spoke on the phone. Peggy and I didn’t discuss it every call, but it did come up every now and then.
And Peggy also roped in her best friend Michael, who visited her the most often. Here’s how he first described to me their conversations about the issue:
I am not certain that it is all really happening the way that Peggy believes it is. She’s spoken about this our last two conversations. At the end of each, she says it is getting better.
She cannot seem to remember the woman’s name that uses her bathroom….It is difficult for her to make sense/clarify anything to me. I try to help figure it out with her, but there are few logical connections, which is why I thought it was not really happening the way she was presenting it.
Now, it is certainly the case that if other residents in memory care have to use the bathroom, they will choose the first one they can find, even if it’s in someone else’s room. Could that be the case here? Or was Peggy talking about a memory care staffer, maybe one who was present in her bathroom in order to clean it? Was Peggy upset because she thought someone was invading her personal space? Or was there really a mess being created?
We all tried for weeks to figure out what the problem was. During one visit, Michael attempted to get some clarification, but Peggy’s explanation “made little connective sense,” he said, so he decided not to push it too much. Unfortunately, when he tried to steer the conversation elsewhere, the bathroom situation was all she wanted to talk about. So Peggy provided him with more details, though it was just a lot of odd or new information. For example, this time she said the person was actually a male, had taken a poo in her room, and had been doing it off and on for years!
So now we were getting into some wild territory. We could not establish if the person Peggy was seeing was male or female. She recently said it was a man, but earlier had referred to the person as “she” or “her.” She seemed certain it was a resident, not a staffer, but there was no way to know. And while she usually said the person was in her bathroom, other times she said bedroom.
“It was impossible to get the same or a consistent story,” Michael told me. “Even during the conversation, the info changed so I am not sure what is really happening!” Apparently, Peggy also told Michael that “it” happens a lot, and “is all over her room!” He had no idea what she meant.
The only thing he could be sure of was that Peggy was very upset, and wanted “it all” to stop.
Didn’t we all? It was frustrating, to be sure. It was all so weird that I had Peggy checked for a UTI (which can dramatically alter the personality of a PwD), just in case. But she didn’t have one, so that was not the issue. So Michael probed some more, and made some incremental progress.
Michael guessed that maybe Peggy was upset about trash left behind, rather than actual waste, so he queried her and she said yes, that was the issue. However, “she could not clarify, so I am not really sure,” he told me. “I would love to get into the room again to see if I could understand better what she is saying. She was very unhappy about it all and does want it to stop.”
But with so little concrete information to go on, how could we solve this problem for her? Covid restrictions at the time meant Michael would visit with Peggy outside, and was not able to inspect her room yet. So for the moment, he figured that the most important thing was to be supportive. He told her that he would talk to me about what was going on, and also see if any staffers knew what was up. That made her feel better. And he kept asking questions to try to get better answers.
Later, Michael shared with me his theories. “I cannot believe a resident would be going in and pooing in her room, on a regular basis, and you not being told,” he said. His best guess? That memory care staff were not cleaning her space as well as she wanted, because she often talked about the fact that “something unclean” continues to be there, and it wasn’t her fault.
And then all was revealed—well, some was revealed.
When Michael was able to get back inside, he determined that the “poo” Peggy kept referring to was either some miniscule bits of dirt that hadn’t been properly swept up, or something as simple as a piece of paper that a resident had likely dropped. It was nothing horrible. No actual poo. Peggy was just annoyed that there were small pieces of trash in her room!
I agreed with his assessment. Of course, I never thought there was actually poo in her room, because the floors in memory care were usually pretty clean. Someone was mopping the floors there every day; I saw them do it! And residents’ rooms were swept regularly, too.
So that was that. We took care of Peggy’s trash concerns, we listened, we cared, and she was finally satisfied. It was the best we could do for her but we were happy she was no longer obsessed with the situation and could move on to other things.
We never did find out much more about her unwanted visitor, though, the man or woman that she believed she saw so many times. She may have been hallucinating for weeks, in fact, but who knows? That part of the story will always remain a memory care mystery.
