“My grandmother does a lot of ‘study (gongbu)’. Those are just some activities, but we named them ‘study’. What motivates her [to engage in those activities] is her desire not to get dementia, and it’s effective anyways.”
Mrs. Choi was diagnosed with dementia in 2013, but she has never been told about the diagnosis. Her family was worried whether her remaining years as well as family relations might be negatively affected by the diagnosis. Jimin, Mrs. Choi’s granddaughter, had disagreed because she had thought that Mrs. Choi should be given a chance to put things together for herself before she would finally lose her memory, but the majority of her family members decided to conceal the diagnosis from Mrs. Choi. Since then, Mrs. Choi has been living with/out dementia—as she was taken care of as someone with dementia, while being treated as if she did not have dementia (Lee, 2019). Not to get dementia in her lifetime has become an important goal in Mrs. Choi’s life. With this aim, she willingly and happily takes her medication in order to “prevent” dementia, and she engages insome activities that they call gongbu, a Korean word for “study”. What does she study? About herself, about her life.
Every night after dinner, Mrs. Choi sits down with facilitators, Jimin and Jimin’s mother, for a “study session”. She grabs one of the “workbooks” that Mrs. Han, Jimin’s mother, has made for Mrs. Choi. Each workbook contains Mrs. Choi’s life stories that she keeps forgetting and has been asking her family members to tell.
“The workbooks are quite well made. Once we manage to get her to grab the book, she takes on the flow. It says on the cover, ‘Choi Suja-ssi Gongbu Chaek (The Study Book for Mrs. Suja Choi)’, and opens with a phrase, ‘Mrs. Suja Choi is…’ When we open the book saying, ‘OK, you are studying now,’ her eyes catch her name on it. Now, the book is on the table and she is holding a pen in her hand, which gives her the feel of a study session, a sense of pride and a kind of fullness. With her heart filled with pride [as a studious student], she starts reading what she is most interested in now.”
“Now that she can’t read fast, she looks at the book very slowly. She can ask questions at any time: from things like ‘what does it say here?’ to things that surprise her as ‘new’ things like ‘oh, was I from that town?’ She reads the workbook alongside some activities like group discussions. […] The book is organized according to my grandmother’s ‘stream of consciousness’, following the order of questions that she asks. It’s like this: she always becomes curious about A after she learns about B, then the photos and texts about A follow those about B. It’s organic. She browses the workbook, gives a mini-presentation to us, ‘this is me’ type-thing.”
The “study session” is now set as an evening routine for Mrs. Choi, Jimin and Jimin’s mother that usually takes a couple hours. It does not mean that Mrs. Choi would remember what she learned that evening till the next day, but for now she is having fun during the session and is ready for her bedtime without many hassles. She is at once having fun and learning about herself. Now that she got answers about things that she really wanted to know, she really wanted to remember.
Most of the materials that are included in the workbooks and used in the “study sessions” (as audio-visual aids) were from Jimin’s “archives”. Once Mrs. Choi was diagnosed with dementia, she started collecting and recording anything that seemed to help her recall her grandmother—from the voice of grandparents who call her by name to their life stories, from family photos to receipts in Mrs. Choi’s grocery bag. On some good days, Jimin would sit down with Mrs. Choi, ask her about her life over photos and other objects that she had collected, and record what Mrs. Choi said. As she pursued more and more details about Mrs. Choi’s life, the archive kept growing. The more Jimin learned about Mrs. Choi’s life, the more she became curious about other details, “things that no one would be curious about, […] but that would turn into something that I’ll remain curious about forever”. Jimin’s “archive” was repurposed when Mrs. Han came up with an idea to make a “workbook” for Mrs. Choi.
Mrs. Han started organizing Mrs. Choi’s life stories and photos as a way to deal with Mrs. Choi’s repetitive questions. There are certain questions about the past events that Mrs. Choi keeps asking out of anxiety, which took much time and energy to answer faithfully every time. And, it was not always easy for Mrs. Han to convince Mrs. Choi about what actually happened and how, and other “proofs” like photos needed to be shown. For instance, one of the most recent, significant events in Mrs. Choi’s life, was the death of her husband, which she could not recall and wants to “remember”. Mrs. Choi would repeatedly ask her daughter-in-law and granddaughter about the day he passed away:
“She has no memory of that time when my grandfather passed away. She wants to remember it most. She asked the same questions repeatedly, like a million times a day: where was I, when he passed? How did I take care of him when he was sick? Who were the ones who came to the funeral? At some point, it was not enough for my grandmother to just get [verbal] answers to the questions, and she started asking for evidence. […] My mother put together stories and photos that can answer those questions—she thought she couldn’t repeat the same thing anymore.”
The Workbook was conceived as a set of “FAQs” for the grandmother about herself, supplemented by visual and audio materials that may help her recall or just get a better sense of what happened in the past. Jimin’s mother organized the materials, stories and photos, in a manner that follows Mrs. Choi’s line of inquiry, her “stream of consciousness” in Jimin’s terms. Being asked questions and having to respond to those for a while, they figured out some patterns in the order of questioning. If one question leads to another, the answers can follow the same order, they thought. For Jimin and Mrs. Han who were asking how the items in the FAQs can be ordered, repetition itself could become an object of inquiry. As it has become increasingly difficult for Mrs. Choi to recall the past, they also put together more details that Mrs. Choi would wonder about and made more “intensive” versions of workbooks. On a good day when she appears to be relatively lucid, they sit together with a “basic” workbook. On days when Mrs. Choi seemed to have more difficulty, they would use the “intensive course” workbook with audio-visual materials such as Jimin’s recordings and home movies. Thus, Mrs. Choi “re-learns about herself”, sometimes being surprised by “new” things that she learned—how beautiful she was, where she was born, and so forth, which can only be “new” because it has become hard for her to recall. In an interesting way, increasing difficulties that Mrs. Choi experiences in recalling and recognizing have become a site where new things can emerge—not only as new challenges that require more demanding work of maintenance and adjustment, but also as new questions that lead them to different ways of engagements.
I want to underline how Jimin phrased Mrs. Choi’s repeated questions as what “she wants to remember most”. Jimin sees Mrs. Choi repeating the questions not simply because she does not remember, but because she cares about them. She might want to know and remember about the death of her husband as Jimin conceives, or it might also be the case that she could not believe it. In any case, the repetitive questions are repeated because they are significant. However, as they are repeated, they easily become a bothersome task for the caregiver requiring repetition. What Jimin and her mother’s workbook project does is to turn the repetition into something else— a knowledge object of learning and remembering for Mrs. Choi who is curious about them, and an object of inquiry for them to figure out how to make “learning/remembering” possible, despite and because of Mrs. Choi’s difficulty in doing so. Mrs. Choi may not remember the surprising findings about the past the next day, but it does not make the study session futile. Here, the point is not remembering, but making repetition rather bearable, doable, and potentially fun.
This story of Jimin, her mother, and Mrs. Choi who all engage in a “study session” that works on and with Mrs. Choi’s memories every night is unusual, but intriguing. From a certain point of view, the story might be read as a story of preserving and maintaining the person with dementia and her memory—a story that privileges the continuity of the person. and in which everyone seems to work to maintain what “still remains” for the person with dementia. It is tempting to read this story as a way to achieve a kind of “memorial personhood” that others strive to honor, acknowledge, and recall the self of the person with dementia that s/he cannot do it by her/himself (Jennings 2009). The grandmother’s constant questions about herself, which inspired her daughter-in-law to come up with FAQs, seems to also suggest Mrs. Choi’s strong desire to maintain the sense of self despite her oblivious memories. Her comfort, reported by Jimin, after each study session can tell us about the value of endorsing and facilitating communications in caring for someone with dementia (Kitwood 1997). The use of everyday objects as well as audiovisual materials in communicating with people with dementia is another topic that has been widely discussed in dementia studies. Jimin’s story, as such, can be read as a story that shows one way to endorse, facilitate, and preserve personhood and sense of self through a creative practice that works with memories and narratives.
Yet, it is more than a story about preserving the person and her memory. It is also about the creativity of turning repetitions into everyday practices, and furthermore turning forgetting, or the loss of the memory, into opportunities of learning and making new things and to be surprised by those. Mrs. Choi could get surprised by learning where she was born, precisely because she could not remember. Her life stories could be told and retold every night without boring Jimin and Mrs. Han, since they are more attuned to different questions and findings that Mrs. Choi brings forward during study sessions. Even though the workbook follows the trail of Mrs. Choi’s thoughts which Mrs. Han identified while carefully observing her, Mrs. Choi would pause on different lines of the text and ask different questions. Her questions open up opportunities for conversations among these three women that would not be repeated in exactly the same way. In any case, Jimin and her mother do not have to answer the same question over and over again, as if they were automatic answering machines, and as if they were stuck in an endlessly reiterative loop that has no escape. While the workbook project was conceived as an ad hocway to manage repetitive questions without having to repeat the answers, it did more than reduce the energy and time taken to answer those questions. Taking repetition seriously and turning it into practical processes in which differences can emerge, Jimin, Mrs. Han, and Mrs. Choi together are doing time differently.
While Jimin passionately invested her time and energy in working with and on her grandmother’s memories, memories were important not only for maintaining Mrs. Choi as a person to be remembered and to be assisted by others to keep her sense of self. Memories were collected, curated, and reworked through her incessant attempts to get to know about her grandmother who may not be able to answer her questions in the future, to get her grandmother to tell a story of her past actions to be accountable for others, and to let her grandmother speak about and get to know about herself in different contexts. Rather than being the essence of self that dementia threatens to take away, memories in Jimin’s story, being narrated by Mrs. Choi, embodied in objects that Jimin has been “archiving”, and enacted in various versions that are edited and curated for Mrs. Choi herself and her relatives, can be considered as things that allow Jimin to work on dementia and live with her grandmother’s dementia differently.
It is not that the practices suddenly made caregiving easier for Jimin and her mother. They still have to deal with all the intricacies of caregiving. Still, those practices add another layer to the repetitive temporality of everyday life in which more than simple repetition can take place. The newness that emerges in these practices is not the same as the newness that scientists, for instance, would find fascinating in their experiments that may be part of a long-term progress narrative toward a certain goal. It is rather something that gives a sense of opening—out of and within the repetitiveness of everyday care—through curiosity and interests. While the state of caregiving is initiated by certain moral obligations, affections, or other motivations that caregivers may have, they are hard to maintain for a long time. Caregivers struggle to do so, and Jimin’s documenting can be seen as one way to reenergize themselves to maintain care. The new orientation to the documented objects may have diverted their attention not to the messy relationships and emotions but toward identifiable objects to which they can attend. It might have given them time to focus on something else than being immersed in the state of caregiving itself, and “take time” to do something other than being taken up by the other’s time. It is, in this sense, to reclaim one’s agency in the state of caregiving by granting oneself a place to do something as a doer rather than being completely subsumed by obligations, demands, and necessities of the other’s living. One can once again act in time—instead of feeling that she is only caught by it without any possible opening.
Jieun Lee is an Assistant Professor of Cultural Anthropology, Yonsei University. Before joining Yonsei, she worked as a postdoc at the University of Copenhagen for the ERC-funded project Vitality of Disease, Quality of Life in the Making, and has studied how family caregivers of people with dementia in Korea strive to make their lives livable and doable. She is particularly interested in the role of curiosity and creativity in care.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
Jennings, B. (2009). Agency and moral relationship in dementia. Metaphilosophy, 40(3‐4), 425-437.
Kitwood T (1997). Dementia Reconsidered: The Person Comes First . Open University Press.
Lee, J. (2019). Living with/out dementia in contemporary South Korea. Medical anthropology quarterly, 33(4), 501-516.