The Caregiver's Tale

The Caregiver's Tale: Loss and Renewal in Memoirs of Family Life

ANN BURACK-WEISS
Copyright Date: 2006
Pages: 216
https://www.jstor.org/stable/10.7312/bura12158
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  • Book Info
    The Caregiver's Tale
    Book Description:

    Ann Burack-Weiss explores a rich variety of published memoirs by authors who cared for ill or disabled family members. Contrary to the common belief that caregiving is nothing more than a stressful situation to be endured, memoirs describe a life transforming experience-self-discovery, a reordering of one's priorities, and a changed view of the world. The Caregiver's Tale offers insight and comfort to individuals caring for a loved one and is a valuable resource for all health care professionals.

    Identifying common themes, Burack-Weiss describes how the illness career and social meaning of cancer, dementia, HIV/AIDS, mental illness, and chemical dependence affect the caregiving experience. She applies the same method to an examination of family roles: parents caring for ailing children, couples and siblings caring for one another, and adult children caring for aging parents.

    Jamaica Kincaid, Sue Miller, Paul Monette, Kenzaburo Oë, and Philip Roth are among the many authors who share their caregiving stories. Burack-Weiss provides an annotated bibliography of the more than one hundred memoirs and an accompanying chart to help readers locate those of greatest interest to them.

    eISBN: 978-0-231-51077-6
    Subjects: Sociology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-x)
  4. “Crystallized Love”
    (pp. xi-xx)
  5. Part 1. Care Situations
    • chapter 1 Introduction: “The Flavor of the Name”
      (pp. 3-11)

      If your son lies dying in hospice, does it matter if he suffers from cancer or AIDS? If your mother denies that she ever gave birth to you, does it matter whether she has Alzheimer’s Disease or schizophrenia? In other words, what practical difference does a medical diagnosis make in the life of a suffering family member?

      A case could be made for the lack of difference, for the inadequacy of any disease category to explain or contain the responses of family members. So much seems to do with the individuals involved and the history of their relationship. So little...

    • chapter 2 Cancer: “Cancer’s Gift”
      (pp. 12-18)

      “Cancer” and “gift” would hardly seem to belong in the same sentence, yet they are linked constantly in memoirs of child, spouse, and parent care, hinted at in titles (Cancer’s Gift, Healing Lessons, Midstream: The Story of a Mother’s Death and a Daughter’s Renewal) and in excerpts like the one above. Caring for a loved one with cancer uproots the authors from their daily lives, sets them off on a torturous path, and brings them home again with a renewed appreciation for life. How can this be?

      A comparison with other care situations points to differences in the social construction...

    • chapter 3 Dementia: “Everything Crumbles”
      (pp. 19-24)

      You’ve known them so well for so long that they have become a part of you. You don’t need to wonder what he likes and dislikes, what arouses him to anger, what brings him joy. You’ve seen her meet many of life’s challenges—perhaps she was even the one you turned to in your own times of trouble. If he were physically ill, you could talk with him about what should be done. If she died you could be warmed by her memory, mourn all that she was, and move on. But the doctor pronounces him fit as a fiddle...

    • chapter 4 HIV/AIDS: “Burden of a Secret”
      (pp. 25-30)

      Imagine awakening one day to a world turned upside down: the truths you’ve lived by revealed as lies, the people you relied upon turning away, the doors of church, school, and hospital—wide open to others—only reluctantly held ajar for you. And leaning on you for support is a loved one suffering from a disease about which little is known beyond the fact that it is fatal. If that is not enough to throw you into a state of disequilibrium and despair, imagine that you too have the disease and the one dependent upon you is your life partner...

    • chapter 5 Mental Illness/Chemical Dependence: “Companion Demons”
      (pp. 31-38)

      Year after year after year. Hope does not spring eternal, but it may last a long time. There is a new medication, a highly recommended rehabilitation program, a therapist who really seems to care. But then the medication fails or the patient refuses to take it. The recovery doesn’t last. The therapist is transferred. And the patient is back in the hospital, or detox center, or jail, or rooming house, or street. Meanwhile parents grow old, retire, die. Siblings graduate college, marry, divorce, start careers, change careers, travel, return. Children grow into adulthood and have children of their own. All...

  6. Part 2. Care Relationships
    • chapter 6 Introduction: “Spun in Love’s Loom”
      (pp. 41-47)

      Portraying the fragile, complex, and ever-changing nature of the author’s family bonds is the raison d’être of most memoirs. Authors sort out the contradictions of love, untwist the strands to their beginnings, and weave them anew. A tapestry of meaning, adding breadth and depth to the caring experience.

      Who is the person, now the patient, and why should we share the author’s concern for his life and his memory? And what can be told of the relationship before this point that will make its importance clear to us? Like novelists and playwrights, memoirists must find an opportune place and method...

    • chapter 7 Child Care: “An Unimagined Life”
      (pp. 48-57)

      A son is born with a growth on his brain so large that it looks as if he has two heads. An eleven-year-old daughter is hit by a car and paralyzed from the neck down. A six-year-old son comes down with what had seemed like an ordinary flu, leukemia is diagnosed, and he dies within months while doctors stand helplessly by. A brilliant teenager succumbs to addiction and suicide.

      The world is not supposed to work like this. Boys and girls are supposed to grow into self-sufficient men and women, to move from dependence to independence; and in time, to...

    • chapter 8 Sibling Care: “She Was My Parents’ Child, And So Was I”
      (pp. 58-63)

      They started out together—sharing a gene pool, a mother and a father, a childhood home. It may not have been foreseen. It surely wasn’t fair. But one was destined to a damaged or foreshortened future, and the other to a better life. The story of sibling care is one of chained destinies—written by authors who are bound by identification with ill or disabled brothers and sisters even as they claim their right to a different path.

      The story of sibling care usually spans years if not decades. It is rarely continuous, or “hands on.” The most common pattern...

    • chapter 9 Couple Care: “This Terrible Traffic Regulation”
      (pp. 64-71)

      Out of all the people they might have chosen to spend their lives with, they picked each other. They forged an intimate partnership—of which sexual intimacy was both expression and symbol. Then one of them became seriously ill, and now the other is telling their story.

      Little things matter in shared lives: daily routines, small pleasures, idiosyncratic preferences and irritations known only to each other. Anticipated loss of a cherished way of life and efforts to preserve as much of it as possible for as long as possible infuse the memoirs of couple care. Told in parallel narratives of...

    • chapter 10 Parent Care: “The Consummate Act”
      (pp. 72-82)

      Leaving home is the classic coming-of-age plot. It happens after all kinds of childhoods, in all kinds of families. College and jobs, new intimacies and interests, moves across town, country, the world—all are tickets out. Whether the distance is geographic or emotional, a brief adolescent rebellion or a years-long estrangement, adult children maintain a delicate balance between their new worlds and the ones they left behind. Until once-independent mothers and fathers begin to fail—or ever-vulnerable parents worsen. The equilibrium is shattered. And they return to pick up where they left off.¹

      Years, usually decades, have passed since the...

  7. Part 3. The Memoirs
    • chapter 11 Introduction: “Jointly Human”
      (pp. 85-87)

      Maybe you can’t tell a book by its cover. But if you put the cover together with drawings and photographs, typesets and fonts, quotes and guest chapters, epilogues and appendixes, you can tell quite a lot. The book as object—title, jacket, and promotional endorsements included—tells a story all its own. Memoir titles are often lengthy, double-barreled affairs, reflecting the publisher’s effort to show that although the author’s story is sad, reading it need not be depressing.

      Although many memoirs are based upon journal entries, there is great variety in how these entries are used. A few authors trumpet...

    • chapter 12 Memoirs in Brief: “Our Inward Journey”
      (pp. 88-138)

      Jimmy Allen, *Burden of a Secret: A Story of Truth and Mercy in the Face of Aids (Random House, 1995).

      Allen could be seen as a modern-day Job—a leader of the Southern Baptist church whose faith was sorely tested by the suffering of those he held most dear. A son, daughter-in-law, and two grandchildren all had AIDS, and the religious community they had always turned to for support did not want to hear about it. As if were not enough to watch his young grandsons lose their hold on life, he also had to see the doors to normal...

  8. chapter 13 Epilogue
    (pp. 139-158)

    Bruner (2002, 20) believes that all stories have a coda, “a retrospective evaluation of what it all might mean, a feature that also returns the hearer or reader from the there and then of the narrative to the here and now of the telling.” So it is that this epilogue contains two codas: a collective one (summarizing the findings of the memoirs) and an individual one (setting out the conclusions I have drawn from the study).

    What is lost is gone forever. What is gained is something else entirely. Authors find their ways along circuitous paths. Here the losses form...

  9. appendix 1: The Memoirs, by Care Relationship and Care Situation
    (pp. 159-168)
  10. Notes
    (pp. 169-174)
  11. Sources Cited
    (pp. 175-178)
  12. Index
    (pp. 179-189)