By Karen Walker
(January 2, 2019)
[Note: On January 12th at 10:00 a.m. at the Sedona Community Center located at 2615 Melody Lane in Sedona, dementia educator and consultant, Karen Walker, will be leading an interactive, one hour class called “Creating Dementia Awareness”. More info→]
Alzheimer ’s disease, the most prevailing form of dementia, takes center stage in neighborhoods, churches, families, in the world at large, and yes, even here in Sedona. Days may be long and filled with heartache for those who travel the path of caregiving a person with any of the many forms of dementia. After a while, the caregiving journey can reduce the most well balanced person to have dark thoughts and experience total exhaustion. Communication breakdowns are often at the root of the caregiver’s despair.
Years ago, while was hiking along a gentle stream with a friend and discussing this issue, he commented, “It seems like your training in theater improvisation has really shaped how you communicate with people living with dementia.” Synapses fired so I hurried home and opened my dusty copy of Improvisation for the Theater by Viola Spolin. From beginning to end, this book reminded me that the general rules of theater improvisation do parallel the guidelines for interacting with people living with dementia.
Theater Improvisation is merely a word for “I made it up on the spot” and is an art form that requires flexibility, quick thinking and an ability to be spontaneous. The first rule of improv is to always “go with it”, to support and encourage whatever is given by the first actor with lots of “yes’s”. If the first actor says, “How about helping me fix this car,” and the second actor jumps in and says, “You’re not fixing a car! There is no car,” then the scene falls flat and the flow of communication is over. Better to say, “Sure, just tell me what you need, I am here for you.”
So, when it comes to communication, anyone living with dementia may talk about a myriad of subjects spanning many time zones and confounding caregivers with surprising and shocking statements. Whatever the content of the conversation, the goal of the caregiver is to preserve the integrity of the relationship in the moment by “going with it.”
For example, a lady in a nursing home named Meg races her walker from one person to another frantically repeating, “The baby is in the canal! The baby is in the canal!” Meg is living with advanced Alzheimer’s disease but everyone ignores her except for one nurse, Pamela, who decides “to go with it” and says, “I am so sorry Meg, show me where the baby is.” She follows Meg back to her room and discovers that Meg’s plastic baby doll is face down in the toilet. Pamela extracts the baby doll from the toilet, dries and cleans her off, returning the doll to Meg who carries it with her everywhere.
Later that day in the same nursing home, Frank shows up to visit his wife, Marie. “I am glad you are here,” says Marie. “Mother is coming for dinner.” Frank wants to say, “No, no, your mom died a long time ago!” But the last time he said that, Marie cried and cried, as if hearing it for the first time. He remembers learning “to go with it” and says, “Oh that’s nice honey. Your Mother is such a great lady. Let’s take look at these pictures of her.” Frank sits next to Marie flipping through pages of a family photo album and she is momentarily satisfied with this method of connecting with Mother. Notice he did not say, “I know, I can’t wait to see Mother when she gets here!” Instead he supported her train of thought without jumping head first into a false narrative that could lead to trouble.
For those living with a family member with dementia, they are thrust daily, into that scene of two or more people. Furthermore, they are also the incognito director of a 24 hour ever-unfolding improvisational drama in which the person living dementia thinks that they are the director! For many, that 24 hour drama is the same movie every day; Groundhog’s Day, a brilliant satire in which Bill Murray plays a weather reporter who is stuck in the same day over and over and is forced to find new approaches to repeat situations.
For Claire, who is caregiving her husband Bob at home, her version of Groundhog’s Day might unfold like this: Bob is opening and closing drawers and saying, “I just have to get my car! Someone bad took my keys! Where are my keys?” Claire eliminates some of the responses she has had before that only ended in anger and arguments and instead she “goes with it and says, “I am so sorry you are frustrated. I’ll tell you what; I think I can help you out. I have some keys right here that I think will work. Let’s go out and take a ride.” Bob gladly follows her out to the car and she drives him around the neighborhood. His favorite Pavarotti CD plays on the car stereo and he is quiet and content. “Hallelujah, it worked,” Claire whispers, “Now what the heck will I do tomorrow?”
At present, dementia has no quick fixes or magic pills, however this journey may have some bright moments and these moments are to be savored. Creative approaches to communicating can increase the probability of experiencing moments of joy for the drained and exasperated caregiver.
Overall, it may be said, we are all actors when we enter the stage of someone with dementia. They are in their own reality and they run the show. They are the scriptwriter, the director and the producer and can slip in and out of time zones as quickly as the second hand moves. Brain change has taken over their mind and they need our help, incognito of course!
— Edited by James Bishop Jr.