An Interview with Ann Burack-Weiss

In The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life  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. In this interview, Ann Burack-Weiss discusses the book and the experience of caregiving.nn nnQuestion: Family caregiving has been widely researched and there is a substantial body of professional literature on the subject. What do memoirs have to contribute?nnAnn Burack-Weiss: The quantitative research that dominates family caregiving literature asks respondents about their current experience providing help with such “activities of daily living” as dressing, feeding, bathing, and transportation-questions that are designed to uncover sources of stress and burden. For good reason. As anyone who has cared for an ill or disabled loved one knows, it takes an economic, physical, and emotional toll. And, as anyone who offers health and social services to caregivers knows, the purpose of intervention is to alleviate the problems they face.nnThe limitations of quantitative research-primarily centered on who does what, for whom, under what circumstances, with what degree of difficulty is that it fails to capture the complexity of the experience. Memoirs hold the answer to crucial questions not answered in the literature: how do family caregivers “keep on keeping on?” How do their views on family change over the course of caregiving? How can their hard-won wisdom be used to sustain others faced with the same challenges? Memoirs, written by authors who have cared for a relative during a period of physical or mental dysfunction, are an ideal source of such essential information.nnLooking backward, after time has distilled the significance of the event, allows individuals who have provided care to uncover the thoughts and feelings that exist below the radar of scientific inquiry, to reflect upon the impact of the situation on the rest of their lives, and to extract meaning from the experience.nnBook-length memoirs allow authors the space to expand upon aspects of the situation of particular importance to them, to recall the context of the caregiving experience and its pivotal moments, and to shape the narrative to their own voices. Most important, published memoirs are not dependent upon the researcher to report and interpret, but available for all to read and draw their own conclusions.nnQ: James Frey recently admitted that some of the people and incidents in his memoir of drug addiction, A Million Little Pieces, were fabricated. How do you know that the memoirs you discuss are true? nnAnn Burack-Weiss: A memoir is style as well as substance, selective rather than inclusive, and subject to the same imperative to sustain a compelling narrative as a work of fiction. While these inherent characteristics do not excuse conscious misrepresentations of people or situations (particularly egregious when these are used for the author’s self-aggrandizement or the denigration of others), the form poses difficulty for those seeking “the truth, the whole truth, and nothing but the truth.” A memoir is written to make the author’s case. Whether that case is to bear witness to a past time of suffering, to honor the memory of a now departed loved one, to justify one’s own actions, to explain those actions to oneself or others, or to offer hope and guidance to those undergoing a similar experience (only a few of the reasons that inspire authors of family-care memoirs), the author’s purpose will influence what is included and with what emphasis. Omissions—whether to protect oneself or others—are common. And there are the vagaries of memory itself. Eudora Welty described it well: “As we discover, we remember. Remembering, we discover.” I accepted a few facts as literally true: that the authors were indeed the persons named on the cover and pictured on the book; that the photographs sprinkled through the text were of their families; that their relatives suffered from the illnesses and disabilities attributed to them; that the care experience they described was the truth as they saw it. That the artifices they used to shape a readable narrative—particularly verbatim conversations and omissions—were, finally, not significant. After spending the past decade in the written company of over one hundred authors, I am convinced that the truth of a memoir is not in its pages; it is in the resonance of those pages with the reader. If an author’s words bring us closer to our own truths, they have filled their purpose.nnQ: Did any of the findings of the study surprise you? nnAnn Burack-Weiss: Yes. Many findings surprised me. Because I began with extensive personal and professional experience in family care, I expected to find descriptions of authors’ struggles providing hands-on care and the meaning they retrospectively drew from the experience. While this indeed proved true, it was only a fraction of what I discovered.nnAmong many interesting findings—developed at length in the book—are the following:nn(1) Each care situation (the illness or disability) has its own story. Examples of memoirs in which these are portrayed are Cancer: Philip Roth, Patrimony; Janet Reibstein, Staying Alive; Stan Mack, Janet and Me. HIV/AIDS: Fenton Johnson, Geography of the Heart; Jamaica Kincaid, My Brother; Elizabeth Glaser, In the Absence of Angels. Dementia: John Bayley, Elegy for Iris; Eleanor Cooney, Death in Slow Motion; Sue Miller,The Story of My Father. Mental Illness/Addiction: Jackie Lyden, Daughter of the Queen of Sheba; George McGovern, Terry; Elizabeth Swados, The Four of Us.nn(2) Each care relationship has its own story. Examples of memoirs in which these are portrayed are Child care: Kenzaburo Oe, A Healing Family; Donna L. Breen, Cancer’s Gift; Isabel Allende, Paula. Couple care: Jean Craig, Between Hello and Goodbye; Greg Manning, Love, Greg and Lauren; Morton Kondracke, Saving Milly. Sibling care: Margaret Moorman, My Sister’s Keeper; Jay Neugeboren, Imagining Robert; Alan Shapiro, Vigil. Parent care: Charles Pierce, Hard to Forget: An Alzheimer’s Story; Kate Millett, Mother Millett; Karen Karbo,The Stuff of Life.nn(3) Family care and “hands on” care are not synonymous. Memoirs reflect many individual variations.nn(4) The effects of care situation, care relationship, and individual variations are interrelated and synergistic.nn(5)There is a predictable range of response from from loss to renewalÑten steps that are commonly found across all family-care situations and relationships.nnQ: What kind of readers will benefit from The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life? nnAnn Burack-Weiss: For the clinician, memoirs offer a treasure trove of possibility. Memoirs can be recommended to clients who are receiving or providing care—joining them to others in the same situation. Memoirs suggest areas to be explored when family members approach clinicians for help. Memoirs are a reminder that any professional advice must be individually tailored, and that knowledge of the individual can only be acquired through explorations of the meaning of his experience to him.nnFor the reader who has gone through a family-care experience, the memoir becomes a source of comparison. How do the author’s reactions resemble her own? Did he make the same choices, come to the same conclusions, in a similar situation? For those who are currently in the throes of a family-care experience, a memoir that depicts the same situation or relationship is more than reassurance that someone has survived to tell the tale—it provides a picture of the care career that is rarely seen in the popular media. Memoirs of family care offer a variety of practical suggestions as well as emotional support. Most of all they alert readers to the fact that what they are going through today will look a lot different a year, five years, or ten years from now. Projecting themselves into that future time and looking back at the present moment may provide a helpful, comforting, perspective.