by Ginnie Horst Burkholder
“Word salad” is what a Reader’s Digest article calls the scramble that happens when persons with dementia use substitute words and phrases for what they are trying to say. Word salads have been the source of both laughter and tears for us. The laughter comes with acceptance, when neither of us is overwhelmed with frustration or is under pressure. At other times it seems impossible to accomplish tasks, feel connection, or create understanding, as words get hijacked and replaced by impostors, often without Nelson’s awareness.
When I am coping well, word salads can be entertaining. We had stopped on our way out the driveway so that Nelson could pick up the mail. Getting back into the car, he wondered, “Can I tie myself up now?” This time I knew exactly what he meant. I had told him not to fasten his seat belt when we left the house since I knew we would make a stop for the mail. Such an easy translation lets me enjoy some amusement and move on.
Losing things like combs, gloves, and hats is routine (as is replacing them because searching for them is frequently time-consuming and unproductive). One day when he’d lost his glasses, he provided my all-time favorite word salad. “My glasses dripped on the floor and now I can’t find them,” he told me. This time we found them easily, though not on the floor where he thought they had “dripped.”
Nelson loves to contribute flowers from our flower garden to SARAH, the adult day care whose bus picks him up each morning. It was last spring at breakfast when we had this conversation:
“The bus is so hard to carry,” he said.
“You aren’t supposed to carry the bus,” I countered, laughing at the image. He laughed too.
“The flowers are hard to carry on the bus?” I guessed, prompted by the flowers he had ready to go.
“The clock in the kitchen,” he told me recently, “is four inches different than the one in the living room.” Those are the easy-to-interpret word salads.
Some mornings, the minutes tick slowly by while I wait for him to accomplish some task while I stand waiting and impatient. I want to do it for him, but he persists. As the disease progresses, he has more frequently welcomed my offered help. But there are still times he needs to prove to himself he can do it, and so I throw a straitjacket on my impatience and wait.
One such morning, he simply couldn’t sort out what to do with his shoes. When he was at last ready for me to help, he thrust his foot at me and said, “I forgot the middle foot.”
“You have three feet now?” The image was startling, and we laughed together as I dropped to the floor to put his shoes on. I often feel a mixture of sadness and amusement at the way words disobey his intentions. I have learned to focus on the amusement in the moment and deal with the sadness later by journaling, crying, talking to someone — whatever it takes to slosh through the emotions and move on.
Sometimes I can only surmise I am understanding what he intends to say. One morning I asked if anything had happened at SARAH the day before to make him feel anxious. He had bolted out of bed the night before.
He thought about it, then began, “Two people do not…” There was a very long pause. I studied the ceiling, trying to reign in my impatience. Again he started, but could not get past, “Two people do not…” I waited and studied something else. Finally he said, “They work against each other. Separately they are OK. When they are not all right, they are OK, if that makes sense.” I interpret there is discord, but I do not know who or why. Sometimes even though my interest or curiosity is aroused, I simply have to accept that the information I have will have to do.
On another morning, he kept asking me if he could take the fan to “work.” When I asked him to point at what he wanted to take, he pointed to the ceiling fan. I am not a morning person and playing twenty questions first thing is not my idea of a good time, but sometimes it is the only way to get the information I need. Eventually, he said he didn’t want to get his jacket wet. Eureka! It was raining outside. It was the umbrella he wanted. That day in August, I journaled, “God, are you on this roller coaster for sure and certain? If you’re not, I’m bailing here and now.”
Before Nelson started going to SARAH full time, we would faithfully go to all of the Alzheimer’s Association support group meetings. Somewhere along the way, he started calling it “old timers” because he couldn’t remember “Alzheimer’s.” I ignored it at first, even though it niggled me terribly. I hadn’t turned sixty yet, and I was not at all happy to be in this group of late-sixty and seventy-year-olds. One day I erupted, “Don’t call it old timers! I am not an old timer!” I knew it was pointless, but I drilled him on how to say “Alzheimer’s.”
The word salads continue to challenge me, but now we seem to be transitioning to the bigger challenge of more muffled, unintelligible patterns of speech. I can’t let myself think about the days when that transition is complete. Instead, I remind myself of all those who have stayed with and supported me on this roller coaster. It is because of them I can say I haven’t bailed. I am still here deciphering word salads, living on the roller coaster, and praying often for help to hang on, and for the wisdom to know what to do when I no longer can.
If you have a favorite word salad from a loved one with LBD, please share it by posting a comment to this entry. We all need some laughs to get us through!
© 2007 Ginnie Horst Burkholder
To e-mail Ginnie about this story, click here.