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CHAPTER 4

Stories of Abby: An Ojibwa Journey

Speak to the earth and it shall teach thee.

—Job 12:8

Abby’s Story Elizabeth E. Chapleski

This is the story of a death in a nursing home across the Canadian border, the death of a 76-year-old Ojibwa woman named Abby. The story was told to me by Abby’s daughter Mary, a nurse who administers a Native American health clinic. I have known Mary for more than 15 years through my research with Native American elders and as a member of the governing board of the health clinic. I am honored that Mary entrusted me with this story so close to her heart and overflowing with Ojibwa traditions.

Abby gave birth to 18 children, and 13 were still living at the time of their mother’s death. Although Abby had been living independently for many years following her diagnosis of Alzhei- mer’s disease 5 years earlier, essentially, Mary had cared for Abby. As her disease progressed, Abby became increasingly in need of 24-hour care and was eventually placed in a skilled nursing facility located near this daughter. Mary visited her daily and brought her home on weekends and holidays. Mary explained her mother’s dementia as “being in another place,” perhaps “another dimension that we can’t understand.” She talked about how the family visited frequently and often “argued about Mama’s care—even in Ma- ma’s presence.”

End-Of-Life Stories : Crossing Disciplinary Boundaries, edited by Donald E. Gelfand, et al., Springer Publishing Company, Incorporated, 2005. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/gcu/detail.action?docID=423235. Created from gcu on 2026-02-19 00:42:50.

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52 End-of-Life Stories: Crossing Disciplinary Boundaries

During her last two weeks, Abby had refused most of her food and become increasingly unresponsive. The family wanted her to receive IV feeding and oxygen, believing it would relieve her suffering. Mary, on the other hand, believed that her mother, the dying person, knew what she needed and what was best for her. Mary noted that “our efforts to relieve pain and suffering are based on our needs, not the patients’ wishes.” Also, Mary wanted to help her mother pass on in the “Indian” way: naturally, “taking cues from the universe, the earth,” as well as from the dying person, and really listening, often to nonverbal, subtle communications.

As Abby’s condition worsened, the family arguments in- creased, especially around issues of advance directives. Although no one in the family wanted Mother to suffer unnecessarily, Mary’s perspective lay in opposition to the rest of the family’s. Mary believed that the “universe was telling them” of their mother’s imminent death. She was convinced that although her mother appeared to be comatose, or at best semiconscious, her ability to hear or understand at a deeper level should be respected. “I was the tool, spiritually,” Mary reported.

I was submerged in the process of her passage in a way the others weren’t. The subtleness of the earth and its constellation tuned me in to the timing of when her passage was going to be. I was listening to many layers of understanding—I watched the flowers change, the constellations visible in the night sky, and the full moon was coming. I knew then the time was close.

She was alone in her views, however; her family believed in the modern medical system whereas she wanted her mother to die an “Indian.” This desire stemmed in part from Mary’s knowledge that so much had been taken from her mother during her life, especially at “Indian Boarding School.” These residential schools, often under the auspice of the Catholic Church, were the Canadian government’s solution to the “Indian problem.” These schools were assimilation efforts designed to remove all vestiges of the indigenous culture: language, religious and spiritual beliefs, dress, ceremonies, and even ties to family and clan.

Mary’s comment about the physicians’ and nurses’ willingness to allow the traditional treatment was that “it didn’t really matter to them—in Canada it was just another Indian dying . . . but that was okay, it made my work easier.”

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The day came when Mary, after observing the earth and sky and her mother, informed the family that Mama had only a few days to live. Mary requested that Mama-nan be placed in a private room so that the family could prepare her for her final journey. The move was approved, and the family spent those last few days preparing. The room was cleansed with sweet grass and sage. Abby was washed down with cedar and tobacco was offered. Mary cradled her mother in her arms as her culture had taught, singing and speaking to her in the native language. She explained that her family was disturbed by the agitation and stress the physical body often exhibits as organs fail and life wanes. Mary said, “The family thought Mama was in pain and wanted to sedate her—they were 98% against me.” But Mary was firm and persevered.

As time went on, Mary’s physical and spiritual presence seemed to permeate the room, calming her mother and finally her family. This process of moving into another’s reality seemed to make Abby’s passing as joyful as the passage into life at birth. Not without stress, as in the birth passage, yet meaningful. Mama-nan had given life to Mary and the others many years before this day, and now Mary “accompanied” her mother to the brink of this final journey. Abby was not alone. Everyone there at the time of crossing-over experienced a deeply spiritual phenomenon. The nurses were al- lowed to observe the process and remarked on how peaceful Abby looked after she breathed her last breath.

Mary continued,

biidaabin—a time in the morning when night shifts to day—is a very powerful, meaningful time for passage. That is when my mother passed. I left the room to observe my mother’s spirit travel on her journey. . . . The sky was remarkably clear, the Milky Way brilliant beyond belief. I never saw the Milky Way like that, not like that . . . that’s how I know it was her choice to go then. Everything, all the physical signs equaled the rightness of it. I was just the facilitator—I removed the barriers, so things could happen naturally.

Mary had visions of the deer taking Mama-nan to the brink, and the white horse met her and rode with her to the “next place.” Mary felt she had taken one step into that space and was allowed to feel its beauty and peace. She was honored:

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All these things are a part of American Indian belief—the deer opening the garden path, the Milky Way as the path, the white horse or thunder being who accompanies the person to the spirit world. Mama’s traveling box had been carved out of pine, with all her clan and her children symbolized on the box.

The family had studied Basil Johnston’s (1976) work on Indian hieroglyphics, seeking to design this box in the old, old way, when Indians put ghost boxes over the graves. Abby was clothed in a new dress made by Mary, and laid on a quilt also made by Mary, with new moccasins for traveling, and a satchel bag over her heart filled with special symbols of Indian life.

Everything was researched and had deep spiritual meaning. I really prepared . . . [I] wanted her to have what she deserved as an Indian woman, so I researched the teachings of the Anish- nabe, the Ojibwa.

I believe in my heart our mother couldn’t have chosen a more profound time to pass over—it was an incredible gift for me. It was her choice, her timing, and she continued to teach us . . . it had nothing to do with me. It was all about my mom, the spirit world and the unveiling of those things. I was left with a feeling that I had stepped for a moment into ‘that’ world . . . it was so profound. I thank her for allowing me to experience that. . . . It has given me insight into the living and palliative care. It made me even more sensitive. My mother taught me more about nursing than I learned in nursing school.

Cultural Response Ardith Z. Doorenbos

In its broadest sense, culture refers to the world view, values, norms, and behavioral guidelines shared by a group of individuals (Leininger, 1991). Culture is the framework that members of a society use to view, understand, behave, and pass on information to each succeeding generation. Traditionally, the word culture is associated with a specific ethnic group; however, it also can be applied to a specific religious group, and in many cases it encom- passes both.

For Abby, being a member of the First Nations defined both her ethnicity and her spirituality. The region Abby and her family

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inhabited is the Upper Great Lakes area (in Wisconsin, Michigan, and Ontario, Canada), where the Anishnabe (the indigenous people of the Ojibwa, Ottawa, and Potawatomi tribes) live. State or na- tional borders did not always recognize tribal boundaries. How- ever, as Canada and the United States are nations in which people from a variety of countries and traditions coexist, their histories as related to this story are similar. Beginning in the 1800s and lasting well into the 1900s, both nations desired to create unified cultures. To promote these social policies, First Nations children such as Abby were sent to boarding schools to force assimilation. Such policies were later abandoned. Instead, there have been policy shifts toward a greater appreciation for the value of diversity within these nations. A devastating consequence of these prior policies was the loss of the widespread knowledge of many these groups’ own traditional practices. As Jackson and Chapleski (2000) note, however,

Some American Indians have managed to retain certain fea- tures of their traditional culture in addition to (rather than in- stead of) having adopted those of the American mainstream, and it is these people who might reasonably be considered more traditional, relatively speaking, than those who retain no such traits of Native American culture. (p. 233)

Even within individual families, there is variation in the amount of interest in reclaiming lost traditions. Mary, Abby’s daughter, finds herself alone within her family in embracing their native Ojibwa practices.

A prominent feature of indigenous culture (Jackson & Chapleski, 2000) that Abby’s family seems to share is respect for elders; disagreement grew out of how this respect might best be shown. Abby’s children, whose ages span 30 years, may have experi- enced different acculturation pressures throughout their lives and represent it in varying degrees. Nevertheless, the family disagree- ments about Abby’s treatment did not inhibit Mary from persisting in her research of the “old ways” and preparing so that Mama- nan could pass naturally into the spirit world. In Mary’s view, her mother had suffered great indignities as a First Nations woman in an alien culture, and her passing should restore the respect that she had always deserved but never received. Abby’s story exemplifies Williams’ and Ellison’s (1996) claim that American

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56 End-of-Life Stories: Crossing Disciplinary Boundaries

Indians have historically believed that the loss of freedom to express themselves in traditional ways is an undeserved oppression.

The story illustrates how Abby’s final days began in an envi- ronment of competing agendas—of Mary, of her family, and of the nursing home staff. In Abby’s story, there were varying levels of interest in her having a traditional Ojibwa death. For Mary, preparing Mama-nan for her final journey in the “old-old way” was critically important. After initial resistance, the rest of the family came together and participated in this ritual. At first, the nursing home staff responded passively when the request was made to perform these rituals. They did not put up barriers because holding the rituals did not interfere with their daily routines. Yet, when the nursing staff experienced the power and beauty of Abby’s death, they were profoundly moved. One could hope that positive experiences of this kind would encourage health providers to be more open to a diversity of approaches to dying.

Narrative Response Richard Raspa

Narrative shapes human life. The stories people tell, the tales they believe in, become their reality. The story of Abby is a web of narratives that catches in its strands the contesting realities of First Nations naturalistic medicine and Western biomedical practices.

The narrator is Abby’s daughter Mary, a nurse who manages a Native American health clinic. Mary is an educated specialist in Western medicine. At the same time, she reveres her own native Ojibwa traditions. Her story documents not only her mother Ab- by’s transition from life to death, but also Mary’s own transition from a Western nurse to a First Nations healer. These opposing models of health care are dramatically woven through the tapestry of the story.

At the beginning, Mary refers to her mother’s dementia as “being in another place,” an Ojibwa concept that contrasts with the biomedical labeling of Abby’s condition as pathological. Mary’s category of place neutralizes the negative assessment of the word Alzheimer’s. It is simply another psychic space to which human beings can go, although neither inferior nor privileged in relation to other places. The place metaphor reveals the limits of our

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Stories of Abby: An Ojibwa Journey 57

understanding rather than measuring the deviance of Abby’s condi- tion. Here, the deeper implication that health involves a relation- ship to sickness, rather than a dichotomous separation, is drawn. For Mary, everything in the universe is connected: sickness and health, past and present, life and death, humanity and nature, self and other. Mary chooses to appropriate her Ojibwa traditional knowledge to assist her mother in making the transition from life into death. The experience is primarily spiritual rather than biomedical. Someone is, indeed, dying; but something continues as well, beyond death and into the spirit world.

Mary researched the traditions of the Ojibwa. She learned these traditions not the native way through oral transmission but through the modern technology of books, which reconfigured original tribal knowledge into the Western idiom of literacy. Mary’s mother Abby may have forgotten, or more likely had never known, the sacred traditions of her people through her training at residential schools and could not pass them on to her children. The Canadian government regarded Abby as part of the problem— the “Indian problem”—that could be fixed through indigenous cultural erasure. In this story, Mary becomes the postmodern tradi- tion bearer, straddling the chasm between opposing systems of meaning, teaching the family, and administering palliative care to the mother.

Mary reads the universe as text, a system of signs to be deciph- ered. She “watched the flowers change, the constellations visible in the night, and the full moon,” and endows these natural phenomena with meaning. Nature speaks to Mary’s shamanistic listening; it tells her Abby is about to die. In the old ways of the Ojibwa, nature talks. Everything in the universe pulsates with life and responds to everything else. In contrast to the IV feeding and drug interven- tions the family wanted for Abby, Mary takes “cues from the universe, the earth,” and the dying person. Mary “was listening to many layers of understanding,” and she knows when her mother is about to die. Like a healer performing a divination rite, she informs the family of Abby’s pending death. In the end, the family concedes to Mary’s acting as traditional healer. They clean the room with “sweet grass and sage” and wash Abby with cedar. As healer, Mary becomes the mother figure, cradling her “child” in her arms, singing and speaking to her in her native language, comforting her on the journey to the spirit world. Mary is swept

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58 End-of-Life Stories: Crossing Disciplinary Boundaries

into the enactment of the tradition so completely that she has “visions of the deer taking Mama-nan to the brink, and the white horse met her and rode with her to the next place.”

Abby’s transition becomes an event of singular beauty. Every- one is moved, the narrator says. Even the health care professionals are observers of the transition. Mary says her mother’s death was a gift that lent insight into the nature of living: “My mother taught me more about nursing than I learned in nursing school.” Death was not a thief, sneaking in the middle of the night and robbing life from an unwilling victim. Death was a gift that provided insight into the nature of living. Mary learned that death and life make up the threads that continue through eternity. Mary’s transition from biomedical caregiver to native healer has given her a glimpse into the world of her indigenous forebears.

The sacred texts of the past expanded Mary’s world of health care and provided healing for the whole family. In returning to the old stories of dying, Mary is a catalyst for the healing of the family. Abby is restored to wholeness, returned to her native values now blessed by family and Western professionals as they watch the rituals of death. Abby’s family is brought together as they participate in their traditional heritage, and Mary integrates the powerful Ojibwa story of how to die into her professional life as a health practitioner in North American society. The end of her life has transformed those whom Abby has left behind, as new beginnings are made and new futures awakened.

Provider Response Robi Thomas

I am writing about Abby’s story from my perspective as an oncology nurse. The story of Abby and her death is remarkable in many ways. Mary’s devotion to her mother was wonderful, and her insight into the manner in which she wanted her mother’s life to end was poignant. Because nurses are educated to care for the entire family, not just the patient, this is the story of Mary as well as Abby.

Alzheimer’s disease is cruel, slowly robbing a person—and loved ones—of the mind and often spirit. Typically, it evolves over years, as in Abby’s story. In the best-case scenario, after diagnosis the patient and family can discuss end-of-life issues and hope to

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avoid the conflict that Mary and her siblings experience. Abby was eventually placed in a skilled nursing care facility; physicians are typically on staff at these facilities, which makes one wonder what the role of the physician was in Abby’s case. In my view, good care should have involved a health care provider-facilitated discussion about how Abby would die and allowed Abby to provide input about the end of her life while she was still able to make these decisions.

Mary, as the main caregiver for her mother, appears to have spent the most time with Abby, at least in the latter years of Abby’s life. It is reasonable to assume that Mary and Abby talked about important issues during that time, but the communication patterns of the family prior to Abby’s illness are not known to us. It seems that Mary came to understand Abby well during this time, sug- gesting that Mary is speaking and acting according to her mother’s own wishes.

Mary’s sensitivity to nature and her surroundings is important. Her awareness of the earth provided her not only with information she needed for her mother, but also with some peace and guidance in her own life; not only was Mary needing to prepare her mother for death, she was also needing to prepare herself for life without her mother. Allowing her mother to die in the manner that Mary felt Abby wanted can be seen as Mary’s final gift to her mother.

The conflicts in situations such as those between Mary and her siblings, unfortunately, are not unusual. Often, family members experience conflict about end-of-life decisions, and, as in Abby’s story, these conflicts can occur within sight or hearing of the patient. Many health care practitioners believe that the sense of hearing is the last sense to leave when someone is dying, and it is important for family and friends to be made aware of this. Ideally, it would have been much more pleasant for Abby’s family to tell her how much they loved her in those last days, rather than arguing about how her life should end within her presence.

Mary’s love for her mother and her physical closeness as her mother died were powerful factors in Abby’s passing. There is nothing more comforting than to know that family will be with you when you die, and in that respect, we should be glad Abby did not die alone. The narrator recounts how Mary’s calming presence filled the room and seemed to reduce the stress. The text, however, is silent about other family members. Did they feel comfortable in the room? Did they feel the spiritual power that

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60 End-of-Life Stories: Crossing Disciplinary Boundaries

Mary did? Did they feel any connection with their mother’s pass- ing spirit?

The nurses who entered the room as Abby was dying were moved by the peacefulness that permeated the room. It is hoped that the nurses were offering their support not only to Abby, to make sure she was not uncomfortable, but to the family members as well, again, caring not only for the person who is in their immediate charge, but for the family members. The facility should be applauded for allowing the family to prepare for Abby’s death in the manner they requested, rather than in the conventional, often sterile, manner associated with health care facilities.

There remains a concern regarding the role the nurses played during the family’s conflict over whether to sedate Abby to try to manage her pain or to keep her sedative-free. Abby’s nurse could have been available to the family to answer their questions and address their concerns, for the concerns that Mary’s siblings had seem valid. It is difficult to know how a patient who is unresponsive is feeling, and this situation warrants attention and information intervention from health care professionals.

It is also important for the nurses, knowing that Mary was a nurse, to remain aware that in this particular situation Mary filled the role of the daughter of a dying woman, not that of a nurse. Often, it is assumed that health care professionals are able to act professionally at all times; yet when they are placed in a familial situation—particularly in stressful situations such as Mary’s—they are not acting as health care workers, but as family members. Far from being Mary’s role, it was the responsibility of the nurses and physicians to educate the family about what was happening to Abby. Because the dying experience is a powerful one for the narrator and the nurses, it would be useful to expand the educa- tional curriculum of health professionals to include learning about how death and dying are experienced culturally.

Informational Response Lynda M. Baker

As a former nurse, I have witnessed the deaths of many persons. In some cases, the family was present as their loved one took her or his final breath. Other deaths were stormy because the relatives

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displayed their annoyance at the inconvenience of death, were anxious for the person to die, or were fighting among themselves. I found one death particularly difficult because the patient was an elderly gentleman with whom I had become friends. Despite his very deformed, arthritic joints, he managed to write a poem for me. At his death, I was the only one in the room who mourned his passing. While the family struggled to pull the gold jewelry from his hands, I cried. The beauty of Abby’s final journey brought back the contrasting memory of his difficult death.

The role of information in Abby’s story is both dramatic and subtle. It is dramatic because the story emphasizes, or rather shouts about, the importance of culturally sensitive material. The informa- tion needed in this story relates to the First Nations way of dying. The role that information plays is subtle as it is revealed through brief comments about the family arguments and the health care professionals’ attitudes toward “just another Indian dying.”

The story of Abby’s journey from her diagnosis of Alzheimer’s disease to her passage to the other world is really Mary’s story of how she ensured that Abby would die in the “traditional Indian way.” The family’s belief in the ways of the “modern medical system” begs the question of Abby’s wishes and information needs. Did she want to follow her aboriginal tradition, or was tradition more important to Mary, who worked in an American Indian health clinic? The arguments with the family, who also visited frequently, suggest that they had different opinions about Abby’s wishes. Mary does not address these issues, so the reader can only assume that she, as the predominant caretaker, was acting in accordance with her mother’s wishes. Some evidence for this supposition is found in Mary’s statement that she believed “that her mother, the dying person, knew what she needed and what was best for her.”

The information needs of the family were quite varied. They talked about the use of oxygen and IV therapy in relieving suffering and about advance directives. Did they get this information from health professionals, from Mary (a nurse) or other relatives, or from print or electronic sources (e.g., the Internet)? The reader can assume that the family received more information about these options from the physicians and nursing staff than from Mary for two reasons. First, their mother was in a skilled nursing facility, so the family had access to health care professionals who may have

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62 End-of-Life Stories: Crossing Disciplinary Boundaries

talked about the need for oxygen and water to relieve pain and suffering. Mary, on the other hand, would not have offered these suggestions because of her belief that she “was submerged in the process of her [mother’s] passage in a way the others weren’t” and that “our efforts to relieve pain and suffering are based on our needs, not the patients’ wishes.” I wonder what information Mary did provide to her siblings to encourage them to change their views from the biomedical system to the aboriginal way of dying. According to Mary she was successful because the family came together when “Mama had only a few days to live” to prepare Abby for her final journey.

One other issue that relates to the family and Abby concerns the conversations or arguments the family enacted in Abby’s pres- ence, without their realizing that hearing is the last sense to go. As a nurse, Mary would know this information, but why did the family not know? Did the health care professionals mention this important information to the family? It appears that the family may not have obtained or internalized this information; otherwise, these caring individuals might not have argued with each other in their mother’s presence.

The crux of this story lies in Mary’s information needs and how she gathered and used information. One strong influence on Mary’s decision to help her mother “die an Indian” must have been earlier communication between these two about the latter’s treatment in boarding school. Knowing how the church and the government worked to divest aboriginal children of their Ojibwa culture, Mary worked hard to ensure that her mother’s final journey would be in accordance with traditional cultural death rituals.

Mary took informational cues from her mother, nature, and the cultural materials that she researched. She explained that she listened to the “nonverbal, subtle communication” from the “the universe, the earth” and from “the dying person.” Although she is an Ojibwa of the younger generation, Mary seems to have learned how to listen to and gather information from the flowers, the moon, the constellations, and the earth. Her training in informa- tion acquisition allowed her to surmise when her mother would die. This training also provided her and her siblings with the information they needed to request a private room and prepare it for Abby’s final passage. By singing and speaking to Abby in her native language, Mary was able to help her mother relax. When

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Abby died, her family “experiences a deeply moving phenomenon,” which Mary describes to the reader as being able to accompany her mother “to the brink of this final journey.”

Mary’s description of her mother’s passage is filled with infor- mation that may be relevant to the experiences of other First Nations people who are trying to learn more about cultural tradi- tions that they were not allowed to practice during the boarding school era. Although people of other ethnic origins certainly can appreciate Mary’s beautiful description of Abby’s death, they may not be able to gain as much solace from it as Mary did. It was highly meaningful for Mary because she was able to regain some formerly suppressed cultural practices. Mary’s ability to accompany her mother “for a moment into ‘that’ world” provided Mary with the comfort of knowing that her mother’s journey was progressing naturally according to tradition. How fortunate Mary was to have that experience!

Mary, and ultimately her siblings, wanted Abby to leave the world in “an Indian way.” Therefore, to design Abby’s traveling box and prepare her according to the teachings of the Anishnabe, the Ojibwa, they consulted Basil Johnston’s (1976) book, Ojibwa Heritage.

In this story, information came from a variety of sources, including past knowledge about their mother’s life and their ab- original culture, intuition, verbal and nonverbal communication, and books. It is a story truly rich in the value of information.

REFERENCES

Jackson, D. D., & Chapleski, E. E. (2000). Not traditional, not assimilated: Elderly American Indians and the notion of cohort. Journal of Cross Cultural Gerontology, 15, 229–259.

Johnston, B. (1976). Ojibwa heritage. Toronto, ONT: McClelland & Stewart. Leininger, M. M. (1991). Culture care diversity and universality: A theory of nursing.

New York: National League for Nursing Press. Williams, E. E., & Ellison, F. (1996). Culturally informed social work practice

with American Indian clients: Guidelines for non-Indian social workers. Social Work, 41, 147–151.

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