Experienced caregivers know that if you’re responsible for the wellbeing of a person with dementia (PwD), you will have to get really good at solving mysteries.
In the earlier stages of their disease, your PwD may become quite the unreliable narrator, dropping outlandish “facts” into conversation or spinning a wild tale of the day’s happenings. So a good caregiver habit to get into, from the start, is this: Trust, but verify. You’ll always want to support your PwD in the moment—but make sure you fact-check all information afterwards.
When caring for a PwD in the later stages, you’ll need to take your detective skills to the next level. At that point, their cognition and language skills will have severely deteriorated. That means if they become stressed out or confused or afraid, they might no longer be able to tell you why. It will be up to you to get to the bottom of it, to suss out the cause of their distress.
This is what it was like for me as a caregiver for my sister. Every day, there was a new problem to handle that had never been on my radar before. Thankfully, I had members of Team Peggy to help me separate fact from fiction—especially her best friend Michael, who visited her nearly every other day. He and I were in touch constantly, so we could track Peggy’s reality in real time
By the time Peggy had moved into the middle stages of her dementia, it seemed as if something happened every day that was confusing or distressing for her. That’s when Michael and I would compare notes and ask each other questions. Why was she upset today? Did you hear about this new thing? Do you know anything about it? Does this name mean anything to you?
Michael knew Peggy really, really well, but I grew up with her. So it took both of us sometimes to find out what was going on. Maybe he said something to her that triggered a memory? Maybe I knew what she was talking about? So he and I would brainstorm as best we could, pooling our knowledge and experience together, and that would give us a starting point. Then we would take turns asking Peggy follow-up questions about whatever had upset her.
Sometimes, one or both of us was able to figure everything out relatively quickly. I treasured those wins, no matter how small or insignificant. And some of them were very small.
For example, one morning Michael sent me an email to share the latest dilemma—and he had started composing it while he was still on the phone with Peggy. She had called him early, around 7 a.m., freaking out about one of my gifts to her. “She was very upset,” he told me. “Apparently today is laundry day, and one of the workers took the orange sweater you gave her and put it into the laundry. She was very worried because she does not believe it should go in the wash.”
She spoke to Michael for at least a half hour, during which the memory care staff kept trying to convince her to go to breakfast, to no avail. “She was very panicked about it,” he said. “She kept putting the phone down and walking away to talk to other people and then would talk to me without picking up the phone. I barely heard her, and had to yell so she would hear me. Comedy of errors, I swear.” Finally, the staff left her alone, and Michael was able to redirect her.
“I told her to take it out of the wash and hang it up in the closet,” he said. He assured her he would check on the sweater and its laundry tag the next morning. “She felt better then,” he explained. “I told her to go eat and not worry about it anymore. Anyway, she seemed much better when we hung up and hopefully she will not remember the trauma….All is currently calm again.”
Once Peggy was no longer spiraling, all that was left for Michael and I to figure out was what “orange sweater” she could possibly be talking about! Because I couldn’t imagine giving Peggy anything orange; it’s not her color, nor her preference. So I was perplexed, and emailed him back to say so. Fortunately, Michael spoke to laundry staff and was able to clear everything up. The garment in question was the pink sweater I picked up for Peggy (actually a great color for her).
And that’s how it went, just about every day, for several years. I’m not exaggerating—something weird like this happened nearly every day, and each time it would take one or both of us to sort it out and keep Peggy calm. Some days we solved things pretty quickly. Other days, not so much. Often, it was very much like a Nancy Drew mystery. Michael and I would have just one little piece of evidence to go on, and had to deduce everything else from there.
On the best days, it only took a short while to figure out what Peggy was trying to tell us, and how we could fix the situation. Like in the case of the sweater, where Peggy was upset because she thought the staff was going to ruin something that I had given her. Which was completely understandable, even if her emotional reaction was maybe over the top. She was upset about it (as any of us would be); she just couldn’t get out the proper words to tell us outright.
Other times were more much challenging, and those were the days when it really wore us down because the stakes were so high. On those days, if we didn’t quickly find the right answer, a meltdown would be inevitable. Thankfully, Michael is such an easygoing guy that he was able to speak so carefully to Peggy; he was usually able to get to the truth without upsetting her further.
I also tried to stay upbeat during my mystery-solving calls to Peggy. I’m glad I took drama classes in high school, where we did a lot of improvisation! That early training actually gave me the confidence to take a stream-of-consciousness approach in my conversations with her. So I could chat for hours with her, glean out some details of what was confusing her or bothering her without adding any negativity or stress to the situation—and sometimes I would even get somewhere!
Ultimately, you have to keep in mind that your PwD is not trying to annoy you or pester you. They are simply doing their best to hold it all together, to express themselves even though sometimes they just can’t. And when your PwD can’t communicate well, it’s going to be up to you.
