This picture of the old switchboard room looks like utter chaos: lines crisscrossing everywhere, 1000s of possible connections, people frozen in time. If we could listen in, we’d hear a jumble of voices, but it’d be hard to decipher much. It’s the perfect symbol for a dementia brain, don’t you think?
Trying to talk to someone with dementia can be beyond challenging. Sometimes words are lost all together; other times, they are mixed up in fantastic ways.
But if you listen hard, and consider the context, you can become quite adept at speaking dementia.
When my Mom first moved to memory care, she would say things like “the sheriff told me to do it.” Other times she’d say “I don’t like the coach” or “I can’t stand my teacher.” We thought she was confusing dreams with reality, or jumbling the past with the present.
We finally cracked the code when she said “I love my Spanish teacher!” She was very fond of a caretaker with a heavy Spanish accent, and spent a lot of time with her. That helped us figure out that teacher meant caretaker, as did all the other references to authority figures. Eureka!
From that point on, we started to look for contextual references when we didn’t understand Mom or another resident. It was like verbal charades sometimes, but we usually could match words with meaning.
It wasn’t a perfect method: sometimes there was no reference, just confusion. I got off the elevator once and was immediately asked by a resident: “Is it because it’s Chinatown?” As hard as I tried, I couldn’t figure that one out.
So I just talked to her a minute about Chinatown. I told her I’d been to Chinatown in San Francisco, but had never been to Chinatown in New York. She seemed satisfied by that, and moved on.
It was easier the time my Mom’s friend, David, rushed up to me in distress, yelling “My client’s in contempt!” I followed him back to his room, and found another resident sitting in David’s chair. I escorted the errant resident out of David’s room, and told him it was a good thing the judge didn’t toss her in jail. We both laughed at that one.
David had been a lawyer and frequently spoke in legalese. This background knowledge helped when he mixed in more obscure references like adjudication or writ. He was also quite a character: the first time I met him he recited “Jabberwocky“ by Lewis Carroll in its entirety. I’d discuss the irony of hearing a nonsense poem in a memory care unit, but you get it.
Other times David was perfectly clear, like the time he said at dinner: “What we need to do is storm the kitchen for a dispensation of wine!” Again, we all burst out laughing. The staff quickly brought the wine to prevent a resident revolt.
Dementia’s affects on the brain are many, but its affects on language are noticeably profound. Dementia starts in the cerebral cortex, which controls, among other vital functions, thought, perception, and speech. As the disease progresses, communication skills deteriorate.
Over the past eight years or so since Mom’s diagnosis, we’ve certainly seen this. A few years ago, when I went to Texas to visit, she pointed to the parking lot and asked if my plane landed right there. She told me first she’d been watching for my plane; then a few hours later, she told me she’d been waiting for my train.
Now I don’t know if Mom literally thought my plane landed in the parking lot instead of DFW Airport, or if she was wondering if I’d parked my rent car there. Maybe she was just jumbling her nouns and verbs, or maybe she actually thought American Airlines landed at her place. I didn’t correct her or laugh, I just said that I’d flown into DFW and that it was an easy car ride to her house.
Other times her sentences were a bit more difficult to interpret. She told me one time “Don’t go anywhere; I might need a bracelet.” Hmmm. I told her I wasn’t sure what she meant. She said “You know, where you go in one door and come out the other dressed.”
Translation: Don’t go anywhere, they may be calling me to get my hair done soon. How the heck did I arrive at that? Well, it was Monday, and that was hair day. It was also just about the time she went for her appointment.
It was an educated guess, and I went with it. I assured her I would stay right there and would go with her to get her hair done. She didn’t correct me, so I assume that’s what she was trying to communicate.
Obviously, much of dementia language interpretation is guess work. But context, and knowing someone’s background and habits can certainly help. Again, this isn’t always fail-safe.
The same woman who asked about Chinatown once came up to me and announced “I just traded beads for food with the Indians.” No, it wasn’t Thanksgiving, but it was just after lunch.
She frequently referenced Indians, saying things like “Do you have Indian soup?” or “We’re making Indian soup for people all over the world.” I asked her daughter once if her mom worked with Indians, or if there was another reason she talked about them so much. She told me there was nothing in her mom’s background that she knew of, and that she had no idea why she talked about Indians.
Without any historical reference to help me keep conversations going with this woman, I’d just improvise. I’d tell her I loved Indian soup, or how nice it was that she was feeding so many people.
Feel free to just dive into their world, and go for it. You may feel like you’ve jumped down the rabbit hole when you speak dementia (as my friend J.M. says), but there could be worse things.
The greatest gift you can give someone with dementia is the feeling that they’re important, that they’re contributing to conversation. They need to be heard and appreciated. Their self-esteem needs a boost, so give it to them: act like you understand and attempt to carry on the conversation. It’ll make them feel normal and useful.
Sometimes, magic happens. Listen carefully for beautifully relevant and philosophical nonsense. My Mom gave me one such gem a few months ago on the phone. So, I’ll pass it on to you.
It wasn’t a good night to be talking to Mom; she was unusually incoherent. I just kept talking, saying the things I say most ever time I call: “Did you have a good day?” “Are you about ready for bed?” “Was dinner good?” Then I told her about my day, like I always do.
Somewhere in the middle of all of that nonsense, Mom said “gracious hope.” There was no context to go with that; it was just those two words. I told that was beautiful, that I loved her, and hoped she had good dreams. Then I hung up and wrote those words down.
Gracious hope. What could be clearer, or more meaningful, than that?