The Fuzzy Reality of the Haupt Girls

Symmentropy's fourth guideline has four sets of stories that show the need for fuzziness in the rules we make about turning our ideas into stories.

Fourth rule of nonlinear storytelling

Rules for turning thoughts into stories.

By Lee McGavin

The last time I saw my grandmother, she was lying in bed talking to my grandfather and several of their friends who had been dead for 25 years or more. I cannot say that she knew who I was or even if I was there. Nothing in that room reminded me of the woman that taught me gambling or argued politics with me. When she died several weeks later, I was relieved.

The last time I saw my mother's oldest sister, we had lunch in the common area of her nursing home. We spent 15 minutes discussing who would pay for lunch and when the train would be stopping. She was also concerned that when we got off the train, we had to meet with my grandmother who was arriving from Europe 25 years after she died. When she died months later, I was relieved.

The last time I talked to my mother, most of the conversation had to do with where I lived. Six different times, she asked where I was living now. I had six opportunities to explain something different about the Texas hill country where I live. I did my best to mix in some of the puns that still delighted her. I wish I knew if she laughed when I did or if she really understood anything I was saying. When she died two weeks later, I was relieved.

Some medical research estimates that half of the people over 80 years old develop Alzhiemer's or dementia in some form. In practical terms, that means everybody in the boomer generation has one parent that is asking them when the train will stop or where they are living now. Until better ways of helping us retain our memory and our cognitive skills come along, the best we can do is find ways to help our parents. Just about any form of expression from music to drawing to storytelling in all of its forms are part of what we know helps in maintaining cognitive skills.

In the previous post, I told the story of gentling a mustang by negotiating a way to explain myself to a wild horse. When you compare the way a dementia patient and a mustang communicate, there are striking similarities because neither follows the rules that we have established for telling stories. Their reasons for breaking the rules are different but the result is the same. If we insist that the rules be followed, we have no feasible method to enforce those rules. As much as we would like to believe that we can bring someone back to normal cognitive skills by just explaining to them that they have forgotten or that the person they believe they are talking to has been dead for a long time, you may as well tell it to a mustang.

Whenever we tell stories, we know that someone else with the same experience will tell the story from a different perspective. If we apply the normal rules as a listener, we are forced to accept one version of the story as true and one as false the way a jury must decide guilty or not guilty. Only the binary choice of yes or no governs our response to the story. We know from experience that when we listen to many stories about the same event, we use all of the stories based on how well they fit with what we know and what we have heard. It is not necessary to find the one version of the story that is “correct” because we allow for perceptions of the participants. The ability to allow stories to fit with what we know about our world allows us to explain our stories even when the information is just a little bit fuzzy.

My last conversation with my grandmother put me in the place of making a binary choice about her ability to behave rationally. After visiting with her, I could not find a path to a rational conversation with her because I insisted that the rules of reality had to be invoked. Before my last conversation with my aunt, I had learned how to use nonlinear storytelling that permitted stories to fit into a fuzzy reality even when they included questionable material. I was able to discuss the train trip with her and assured her that I would take care of lunch. We were able to discuss her traveling companions and their satisfaction with their journey. It is heart breaking to see strong, bright people suffering inside their cognitive shortcomings. Our best option suspends the rules long enough to get a description of what they perceive, not to accept it as new reality, but to accept their stories of what matters to them in the moments you are together. My last visits with both of these women were moments of demoralizing sadness, but the time with my aunt was much easier because we were able to share her fuzzy reality.

For my mother and the children of Peary Street, the journey into dementia demanded an iron fist in kid gloves. She held onto her absolute ban on storytelling and her faith in making simple yes or no choices. It was not possible to discuss her cognitive decline with her as she consistently refused to acknowledge that there was anything that she could not handle. She would not take medications prescribed by her neurologist and refused all offers to get her some help with daily tasks. Her story remained the one she always told her children, “I'm the mother.” Her rules did not allow for anything to appear fuzzy so she held to her lifelong refusal to share her stories.

My last conversation with her met all of her standards. She was having a lot of trouble with her balance, but would not want to admit to using or needing a walker to get around. There had been several falls, we really do not know how many, but she had some bruises. Of course, the falls were not on her list of topics to be discussed. She told me that she just wanted to call and “check up” on me. I told her I was fine and asked how she was doing. Her response was to tell me who had visited her in the last few days and what her visitors were doing. She asked if I was still living in Texas and would I give her my address so that she could make sure it was in her rolodex. Of course, my address had not changed in years but she was still pleased that she had it right. She asked again where I was living and I explained about the suburban sprawl that is happening outside of Austin. We compared it to the explosive growth near Peary Street many years ago. Then she asked me where I was living, so this time I told her stories of the Texas hill country with some history of the Comanches that used to live here. Each time she asked where I was living, I tried to find something else to say about Austin and life in Texas. We laughed often and hard over silly puns while I compared parts of my home to parts of hers. All in all it was a wonderful conversation as long as the rules were the ones that we had for that day and we kept a somewhat fuzzy definition of reality.

Three days later she fell again fracturing her spine. She went into the hospital for tests, treatment and relief from the pain. They tried to get her to wear a surgical corset, but she refused. Her doctor pointed out to my sister that the good thing about her dementia was that she did not remember how much it hurt yesterday. She remembered enough to ask my sister if our dad would be waiting for her in heaven. While they were deciding the best place for her to rest and see how much her back would heal, she found her stopping point and took her last breath. Even on her last day, my mother's story was the story she wanted told. Search all you want, but you could not find any fuzziness in her rules. The choices she offered were her way and wrong.

When someone stands their ground, denying the obvious for so many years, you find yourself responding with pity or regret. The day she died, I felt neither of those along with the sadness. I was relieved that she had avoided being bed ridden for months and that the pain was over for her. I marveled at her ability to keep the story she wanted told in front of everyone even when she could not move because of the back pain. I was glad that I had a mustang teach me how to negotiate rules for communicating when the normal rules cannot work. I was glad that during our last conversation, I did not want to pull away from the horror of her cognitive loss and that we had one very fuzzy conversation about where I was living.

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