Seven Directions Dealing With Dementia

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

Dementia carries many different meanings for the adult children of Peary Street. Each of us had very different experiences interfering with the fuzzy rules applied by neurologists. While we did not need to have a clinical description of our mother's changes, we struggled to find a thread that could unite our thoughts and concerns for her future. We were unable to share the stories that could have explained our very different definitions of what dementia meant in practical terms.

The three oldest, the Big Kids, all had experienced the difficulties of dealing with dementia from a different aspect of the disease, so they could not tell the little kids a unified story. The little brothers may have had some experience to guide their thinking, but because they followed the household rule of “no storytelling”, they could only allow the older brother to talk about legal issues. The little sisters, the older of the four Little Kids, stepped into this vacuum to define the interactions of the group for the remaining years of my mother's life. Their inability to resolve a balance of secrecy and sharing determined the course of all of our efforts.

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Home of the Art League, Alexandria, Virginia

On the day of my father's funeral, my mother started to talk about getting some sleep because she needed to get up in the morning to organize a monthly art show. She had been in charge of taking in the pieces submitted for blind judging for several years. Each month, she volunteered three days to making the show come to life. I asked her how many times she had missed a day in the years she had been helping. Her look told me I was asking a foolish question, but she assured me that she had never missed a single one. I suggested to her that her colleagues would not hold it against her if she took the day after her husband's funeral as a “grieving day” from her unpaid position. She would not even discuss the possibility. Her blind devotion to yes or no answers, without fuzziness that allows for the erratic demands of happenstance, was admirably tragic. All seven of us knew that we would have to find a way to channel her single mindedness in order to be of any help to her in the future.

Back in Texas, the concerns of Peary Street faded into the background. There were three of the seven children within a 15 minute drive who could keep on eye our mother's daily activity. Toward the end of summer, I started to see emails that expressed concern about her daily routine. She was not eating well, was not taking prescribed medications and was having difficulty handling her finances. While their was nothing alarming, we set up a conference call to keep everyone in the loop. After our family meeting in the spring and experiencing the animosity that still existed, my hope was that I could facilitate the east coast members of the family in what ever they thought was most manageable.

Our most immediate concern was the fact that for the first time in her life, she had no plan for someone to speak for her if she could not. She had no one to approve medical procedures or access her accounts or any of the other little things that we take for granted during 60 years of marriage. We all knew that we did not want legal barriers to prevent us from helping her if and when we could. The second concern was that her cognitive skills were declining. We talked about the difficulty distinguishing between her grieving being responsible or was she really suffering some impairment.

Two things happened during that conversation that changed my perception and attitude toward what I could do to help my mother. I asked if mother had been diagnosed or if they were talking about Alzheimer's disease. My older brother ended that discussion abruptly by saying it does not matter because a diagnosis does not change what you do. If I had known that both his mother and father in law had been diagnosed with Alzheimer's and the turmoil his family continued to face, it would have been easier to move past his brusque dismissal of seeking medical help. I did not have those stories, so I made a it a point to start researching to prepare myself for what might be coming and not to trust the guidance of the children of Peary Street.

The second part of this conversation sounded innocent, but would haunt the group for five years. What we discussed was drawing up a limited power of attorney in the event that our mother was not able to handle her own affairs. Our younger brother argued for a broader document. Just listening to his arguments, I could not help but think that allowing the executor of the estate to have power of attorney as well sounded like it had great potential for a conflict of interest. This part of the conversation concluded with when our younger brother assured us that he understood what we wanted and he would take care of it. What he really did was to draw up a power of attorney that specifically prevented him from changing our mother's will, but gave him complete control over every other part of her life. It would take more than three years and several attorney's before he agreed to show anyone what he had done.

Two conversations with all of my brothers and sisters in 20 years reminded me of all the reasons that caused me pull back from being a part of the group. This discussion left me more determined than ever to stay out of my family's secret agendas. Some groups work to find solutions to common problems or to the benefit of the whole group. Other groups use information as a tool to force a single point of view based on individual needs. Without stories, groups malfunction as individuals without looking for harmony among the members. My mother's first lesson of Peary Street demanded that we help her individually at least in part so that she would not have to face a unified group of her children.

Two months after this conference call, I got an email that our mother was in the hospital with an undiagnosed ailment that had left her weak and somewhat disoriented. Then another email that detailed the blood analysis that showed her sodium levels way below normal. She had not eaten enough salt! That really meant that she had pretty much stopped eating anything in order to avoid getting salt in her diet. None of the emails that I received made any effort to connect the dots into the obvious story. Without my father, she had lost interest in living and had started to starve herself to death. She had refused anti-depression medication, help maintaining the house, offers to get out for activities and in general locked herself into her grieving. Without that unifying story, each of us had to face a decision on acting individually.

I recently received an email about Story Chip that suggested that stories did not help understanding of events. She went on to say that the only reason to revisit old stories was to help someone else to see things in exactly the same way that she did. She finished her paragraph politely saying the stories were nice, but not for her. Her next paragraph explained her reaction to a different set of recent events in her life that had been strengthened by a story told to her by a friend. Most of that paragraph was the story that she shared. There is no contradiction here, just the very odd circumstance that for some people sharing the stories of others is normal but they cannot bring themselves to share their own experience. When you cannot tell your own stories, you still define yourself with the stories that remind you of your own experience when you hear them.

Stories provide us with convenient but very fuzzy definitions. Fuzzy definitions interfere with reducing life to yes or no questions. Life on Peary Street never had shared stories or experiences to preserve binary choices and no person was more insistent on it than our mother. Even when after crawling to death's door because she had stopped eating, the stories could not be shared. With her careful guidance, our family moved into a new era of uncoordinated action.

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