The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parentby Barry J. Jacobs
Caring for a parent whose health is in decline turns the world upside down. The emotional fallout can be devastating, but it doesn't have to be that way. Empathic guidance from an expert who's been there can help. Through an account of two sisters and their ailing mother--interwoven with no-nonsense advice--The Emotional Survival Guide for Caregivers helps family members navigate tough decisions and make the most of their time together as they care for an aging parent. The author urges readers to be honest about the level of commitment they're able to make and emphasizes the need for clear communication within the family. While acknowledging their guilt, stress, and fatigue, he helps caregivers reaffirm emotional connections worn thin by the routine of daily care. This compassionate book will help families everywhere avoid burnout and preserve bonds during one of life's most difficult passages.
Description: This is a self-help/reference book for people in the position of caring for sick, aging, or dying parents.
Purpose: The author's purpose is to help adults who are caring for aging and/or dying parents understand the depth of the process they are involved in and to recognize the limits they have emotionally, physically, and spiritually. This has been a neglected area that is gaining importance as this country grays and ages.
Audience: This book can be used by anyone caring for a sick or aging parent. It is a good resource for mental health professionals to draw upon as well, as caregiver burnout issues frequently lead to depression and anxiety as well as family conflicts. These issues frequently find caregivers turning to therapy to deepen their resources. The author is a therapist and a journalist who writes about caregiving issues frequently in the National Family Caregivers Association newsletter quarterly.
Features: The book presents the key issues and concepts of caregiving predominantly from the process of a family suddenly having to care for the matriarch. The author provides an insightful and realistic depiction of the type of issues and conflicts that come up within the individual and within the family. He includes the perspective of the aging parent as well. He covers the topic from the first days to the last days of the caregiving, providing meaningful context for the first time caregiver.
Assessment: This is a readable, accessible and useful book that grapples with an emotionally difficult area. It is important for people to understand how to care for themselves during the devastating years of parental decline and this book is well worth reading.
"Dr. Jacobs is a master storyteller who brings the realities of caring for an aging parent out of the shadows and into the light. If you find yourself in a caregiving role and want to protect and even enhance your family relationships, while also taking care of yourself, this book is a 'must read.' From sex to spirituality, Dr Jacobs addresses our most pressing questions about the inevitable stresses and strains of caregiving."Susan H. McDaniel, PhD, Wynne Center for Family Research and Department of Family Medicine, University of Rochester School of Medicine and Dentistry
"This is a beautifully written, invaluable, practical guide for families facing serious illness or disability. This unique and truly masterful book combines the wisdom of Dr. Jacobs's extensive professional expertise with his moving personal story of parental illness and loss. Following one family’s journey with illness, the book addresses all the tough issues while providing a powerful model for resilience and the personal rewards that can come with caregiving. This superb book is a 'must' for family caregivers and healthcare professionals. I will strongly recommend it to my patients and their families."John S. Rolland, MD, Department of Psychiatry, University of Chicago and Co-Director of the Chicago Center for Family Health
"Whether you are an experienced or new family caregiver, you will recognize your dilemmas and challengesand find valuable advicein this book. Dr. Jacobs combines the skills of an engaging storyteller and a compassionate family therapist as he accompanies readers through the main journey and the byways of caring for an ill or disabled parent."Carol Levine, Director, Families and Health Care Project, United Hospital Fund
Barry Jacobs builds on 20 years of clinical experience to provide a wise and informative look at family caregiving. This is not just another 'how-to' book, but explores the emotional core of the caregiving experience....Each chapter also contains thoughtful and practical responses to the questions that caregivers frequently raise. There is much that caregivers and the professionals who work with them can learn from this book."Steven H. Zarit, PhD, Department of Human Development and Family Studies, The Pennsylvania State University
"When you feel like you just can't go on as a caregiver, Dr. Jacobs helps us avoid much of the heartache and frustration that can make caring for a loved one such a overwhelming experience. I wish I’d read it while caring for my aging parents, both with Alzheimer’sit would have helped me feel less alone."Jacqueline Marcell, author, Elder Rage, host, Coping With Caregiving radio show
"This book makes it clear that whatever you’re going through, you are not alone. It offers a ray of hope for those going through one of life’s most trying experiences. I recommend this valuable book to anyone involved in caring for an aging or ailing parent."Deborah Popely, family caregiver and former hospice professional
"This book has been extremely helpful as a required text in the master's-level family therapy course I am currently teaching. Dr. Jacobs helps the reader understand the impact of caregiving on family dynamics, offering sound, practical advice that is as useful for students and practitioners as it is for family caregivers themselves."Mia Solomon, PhD, Director, Behavioral Sciences, Bryn Mawr Family Practice Residency Program
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The Emotional Survival Guide for Caregivers
Looking After Yourself and Your Family While Helping an Aging Parent
By Barry J. Jacobs
The Guilford PressCopyright © 2006 The Guilford Press
All rights reserved.
At night, after the patients are tucked tightly into their beds, there's a hush in the hospital hallways, and you can hear bad news coming a long way off. A tousled young doctor, rounding on his hospitalized patients after completing his office appointments, charges down the corridor with loafers squeaking on the polished linoleum floor. He stops at the nurse's station, double-checks what he'd been told on the phone by skimming a note in a chart, and then ducks into the room of an 80-year-old woman. Despite the late hour, her two middle-aged daughters are still restlessly perched on plastic chairs by their mother's bedside, dejectedly watching the curled-up woman sleeping. The doctor waves at them to join him in the hall. "As you know," he says breathlessly, "when you brought your mother to the emergency room yesterday for severe back pain, a transvaginal ultrasound found a mass on her right ovary and she was admitted to the hospital for more tests. The results of the laparoscopy conducted today to take tissue samples of that mass aren't good." Pausing, he gives each of them a sympathetic look before stating quietly, "You mother has ovarian cancer. It's a Grade 2, or moderately aggressive, tumor. Probably spread beyond the ovaries. She'll definitely need more surgery." He pauses again and declares, "I'll do all I can to arrange the best care for her. Do you have any questions?" They stare back at him in shock and shake their heads. He then excuses himself and takes off down the hall, white lab coat trailing behind him like a fleeing specter.
The daughters stand there stunned. One gapes, the other cries. They clutch each other's thick hands and say nothing. Years from now, they'll recall the moment as the demarcation point between what they had been—a normal family with an aging but vivacious mother—and what they are to become: an injured, grieving family. Serious illness always arrives with a shock as if a ship, having long drifted on slow currents or glided through open waters, runs up suddenly on unseen rocks. Even among families that face crises with determined upbeatness, there's an initial shudder of fear as the structure of their lives totters. Even family members of a fatalistic bent, who constantly peer ahead for the next bad thing to come, are thrown backwards by the jolt. Even in families in which a parent's age should prepare the daughters for some medical event, a doctor's pronouncement of illness rattles everyday routines with a rumbling crash.
The daughters lean heavily on the railing that lines the hallway wall and slowly begin talking in the low whispers of girls sharing secrets out of Mother's earshot. Though they're both in their fifties, one is 5 years older than the other, and under the moment's duress they revert to the patterned behaviors of big and little sisters. "We've got a lot of things to do. We've got to think things through," the older one says in a pressured tone. The younger one gazes at her expectantly. But the initial shock has given way to only uncertainty for them. What did the doctor mean exactly? they ask themselves. How bad is it really? Did he rush away out of haste or fear of telling them too much and painting too bleak a picture? This is followed by a set of more immediate questions: Are we supposed to tell our mother the test results? Or should we let the doctor tell her tomorrow and then make believe we hadn't known? Their father had died of cancer; won't that make it harder for Mother to handle her diagnosis? And what if it's wrong—should they get a second opinion before saying anything to their mother? And then a third set of pressing questions occurs to them: How can we leave her tonight knowing she has cancer? But what would our husbands think if we don't come home? Are we daughters first or wives?
They hear a couple of nursing aides laughing near the unit secretary's desk. The hallway is otherwise a quiet, lonesome place. The older sister goes into her mother's room momentarily and then comes out again and begins pacing slowly. The younger sister watches her and nervously licks her glossed lips. In all other life crises, they'd look to their mother for guidance. Now, following the doctor's whirlwind visit, that's no longer possible. They're already feeling the loss of the mother they've known.
In antiseptic institutions and offices, during anxious hours of night and day, scenes like this play out. For physicians, they are challenging problems for which biomedicine prescribes evidence-based treatment paths. In a case of cancer, the doctors will consider the type of tumor, the organ in which it's located, and whether an older patient is hardy enough to withstand the arsenal of possible treatments—surgery, chemotherapy, and radiation. But for most people blindsided by a diagnosis, the news occurs against a backdrop of personal and family histories and evokes feelings and associations that have little to do with organic pathology. It's not just that they don't understand the science behind their life-threatening disease. It's that the threat brings those lives into sharper focus. Their memories and dreams, now more vulnerable, seem suddenly more vivid to them. Their relationships with family and friends, revealed as fragile, seem more crucial.
In the morning, when the mother wakes up, she's greeted by her physician, looking studiedly somber, rounding again before his office hours. She glances at her bleary-eyed daughters now slouched in the plastic chairs as if they'd spent the night in them. (They actually went home at their husbands' requests but made sure they returned early so they could be present when the doctor delivered the news.) When the doctor clears his throat and announces in a low voice that her tumor is ovarian cancer, the mother stiffens and then sighs. He goes on to try to explain the specialists he's contacted and the surgery she'll need—at the least, to remove her right ovary—but she's already too preoccupied to hear much of what he says. In those first moments, myriad questions pass through her mind: How much of me will they cut out? Will the pain be bad? Who will take me to the doctor's office? Who will clean my apartment if I get too weak? The physician glances uneasily at her daughters, who nod back slightly. Then he mumbles goodbye to the older woman before making a quick exit again. She's staring toward the window and doesn't answer him.
Over the next hour, the mother and daughters converse sporadically, with long pauses. Her roommate has already turned on her TV, and the cheery tones of the commercials make a surreal background for their gloomy thoughts. The breakfast tray comes, but the mother hardly touches it. She expresses her thoughts in a gruff, even voice that her daughters know she's always used to try to cover all fears. She looks at them hard with her dull blue eyes several times as if trying to gauge whether she can fully depend on them. The makeup on their tired faces is askew, but they appear attentive and concerned. The thought occurs to her that she'll ask no more of them than what she once gave them freely and feels she deserves now—setting aside their busy lives for a while to give her their undivided attention, just as she did, as their mother, for them and, as a wife, for her dying husband.
As the day wears on and her shock begins to fade, the wild multiplication of cells within her still receives little of her thought. Instead, she worries about whether she'll be well enough to make Thanksgiving dinner for the extended family and whether her sons-in-law will resent that her need for care will deprive them of their wives' time. Lying still in bed with her wrinkled face sagging and her silver hair flattened and mussed, she sifts through her past, recalling what it was like for her when she was a child and stared at haggard old people hollowed out by cancer. She wonders what her grandchildren and great-grandchildren will be thinking while watching her in the coming months. She ponders her late husband's choices in his fight against the dread disease, remembering the graciousness with which he faced his death. She feels fresh grief that he can't be there at her side to help her now.
In those moments during that morning when the daughters feel their mother's eyes upon them, they each experience a surge of compassion and protectiveness toward her but also a mild discomfiting shame. Each of them senses intuitively that the serious illness of a loved one brings a kind of reckoning for every family member. Close relatives, especially, feel the press of the tribe's prime rule: Be there in the hour of need. How family members respond to the call to be at the hospital, provide money, or give up their jobs to take a sick parent into their home becomes a measure of their loyalty and love. Though no request has yet been made nor arrangements discussed, the daughters are already aware their mother is taking note of whether they meet or turn away from her plaintive gaze. She'll surely judge them, they figure, for what they do or don't do for her throughout her illness.
The conversation lags, the TV drones, and the lunch tray arrives without fanfare. The daughters notice that their eyes seek out each other whenever they awkwardly sidle between the bed and the tinted window in their half of the tiny room. This is due partly to the unspoken commiseration and camaraderie between them. They look at each other with sad but knowing expressions as if to say "We thought it would be hard if it ever came to this, and it is; we're in this fix together now." But their looks take on a wide-eyed cast at times as if a question hangs in the air for which they need reassurance from each other: Are we really in this together?
What does it mean to be a family caregiver? In some instances, it may initially entail doing a few chores for an aging relative who can no longer take care of her home entirely on her own. As that loved one continues to age, you may be expected to incrementally do more and more for her over time. In other cases, being a caregiver means having to provide 24-hour total care to someone who's been suddenly stricken with a serious illness that has disabled him utterly. In nearly every instance of family caregiving, siblings and other relatives have to negotiate means of tending to their loved one while dividing the labor in a way that feels fair and equitable to everyone involved. Even in the most trusting, committed, and communicative families, there's always some question about who will come through and for how long—not just during the initial crisis but in the months, and possibly years, that follow, when care continues to be needed. When family members don't come through for one another, let alone for the patient, the resulting anger runs deep. Like shared memories of failures to give wedding presents or atrocious behavior at funerals, they recall the disparities of caregiving effort for decades. The hard feelings can harm family relationships beyond repair.
These sisters have always managed whatever conflicts arose between them and were able to cooperate well during their father's decline 10 years before. And yet, more jarring than the crackle of the hospital's paging system, doubts intrude on their thoughts now. The younger one knows her older sister's husband has been set on doing some traveling. Will her sister feel pressure, she wonders, to leave town and Mom? But the younger sister also knows her older sister's inclination to take over situations, and she doesn't want her to grab the glory of doing the bulk of the caregiving. The older one realizes her younger sister has a new grandchild she hoped to baby-sit. Will she sit with their mother as well? The older sister also has long been critical of her younger sibling's passive tendency to let others take the lead. Everything they know of each other's lives—their temperaments, circumstances, and entrenched habits—becomes one of many variables to be weighed in an attempt to discern their caregiving future together.
Here's where the undercurrent of shame comes in. For all their concern about the other's willingness to give care, these daughters are ambivalent about the sacrifices they feel obliged to make. They do want to help their mother live as long as possible with comfort and dignity; they promised their father before he died they would. But they've reached the point in their own full lives where their children and grandchildren need their help while their husbands want them to slow down. No one in the family will openly begrudge them the time they give their mother. But the daughters will feel pressure nonetheless to be just as good grandmothers and wives. They also have jobs. Tending Mom will stretch them thin.
They little relish caregiving her for other reasons, too. Their mother was always a take-charge lady who guided them firmly. They know she deserves the benefit of their strength now, but they're leery of flipping the mother–child roles and usurping her power. Telling her which pills to take, when to go to bed, what to tell her doctors—it would all be so presumptuous of them. Who are they to compound the injury of cancer with the insult of condescension? The mere possibility that taking charge themselves might detract from who she's been fills them with guilt.
There's also no guarantee that, once they rearrange their lives to meet her needs, it will end anytime soon. Their father may have succumbed relatively quickly, but they know their tough mother will fight longer. The weeks of driving her may stretch into months, the months of comforting her drag into years. If her cancer progresses and she becomes disabled, they'll have to do even more. Lift her? Change her soiled clothes? Anything's possible. At what point would they get sick of it? When would they start feeling resentful? Perhaps they'd even pray for her death one day. It seems inconceivable now, but they've heard of other daughters who long provided hands-on care and became just that desperate for relief.
The afternoon drags on interminably. Their mother tries to nap but is unable to. She then tells the older daughter to make several phone calls for her and directs the younger one to track down her nurse to fetch an extra blanket. The sisters are glad for something constructive to do, although they inwardly recoil in the instant their mother orders them about. While it's normal for family caregivers to harbor negative sentiments, the daughters feel abashed by these feelings. They try to squelch them by refocusing on Mom's needs, straightening her bed, fussing with her hair. Some part of them wants to escape home to their waiting spouses. But they feel compelled to stay so that she's not alone with her worries for too long. It strains them to sit idly for hours, watching her in anguish. But they're both cognizant that, because she has a life-threatening disease, every remaining moment with her is time they should cherish. This is only day 1 of caregiving, and the daughters already feel emotionally and physically spent. They fear their mother will need them for days ahead as far as they can see.
Like most family members, these daughters are struggling with the many possible meanings of sacrifice. For some caregivers, giving their lives over to caring for a loved one will gratify them as the most significant, ennobling endeavor they've ever undertaken. Think of Susan Sarandon as the mother in the movie Lorenzo's Oil who relinquishes her work, friendships, and nearly her marriage to seek a cure for her son's terminal congenital condition. The mission of saving him becomes the moving force of her being. Other caregivers experience the sacrifices as a form of entrapment or exploitation. Consider Edith Wharton's novella Ethan Frome, in which the careworn husband is repulsed by his griping, pain-addled wife and seeks love outside his marriage. By escaping her, he's trying to transform the embittered and lifeless self that caregiving has rendered him.
These dramatic depictions are the extreme poles of a broad spectrum. Few of the close relatives caught up in caring for an ill parent, spouse, or child are as obsessively devoted as a Susan Sarandon or as piteously downtrodden as an Ethan Frome. Caregiving provokes a wide range of emotional reactions to a complicated life choice involving personal sacrifices to yield family benefit. Most caregivers are likely to experience a mix of emotions about what they do, depending on whether they are reflecting on their lot at any specific instant as individual beings or beholden family members. You may feel proud and angry simultaneously. You may feel angry about being burdened, then feel guilty for having felt anger, and then become angry again for having been made to feel guilty. The combinations are infinite and exhausting. You may find that the tension accompanying your conflicted emotions is a cause of much duress.
In their middle-aged years these sisters have probably known many good people who have taken care of ill loved ones. They may see others' efforts as proof that families have always taken care of their own— that duty wins out over personal excuses and doubts, over work and money, even over all pursuit of happiness. As a consequence, they're likely to castigate themselves for their misgivings and try to shunt them aside. That, however, would do them an injustice. Caregiving has always been hard, no matter how valiantly and heartily some family members have embraced it. As a series of daunting logistical and emotional challenges, it's only becoming more arduous nowadays. For these daughters are embarking on the caregiving journey at a time in the histories of the American medical system and our country's families when there exists a strange paradox: Healthcare professionals have knowledge and technologies at their disposal that make them more self-assured than ever in fighting disease. But the family caregivers of our ill citizens have rarely, if ever, been left so beleaguered.
Excerpted from The Emotional Survival Guide for Caregivers by Barry J. Jacobs. Copyright © 2006 The Guilford Press. Excerpted by permission of The Guilford Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Barry J. Jacobs, PsyD, works with couples and families coping with serious health problems. He has faculty appointments at Temple University, the University of Pennsylvania, and Widener University, and is the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, Pennsylvania. He is also a widely published journalist who has written extensively for The Village Voice and other publications. Currently, he writes an advice column for Take Care!, the quarterly newsletter of the National Family Caregivers Association and edits the In Sickness & Health column for the journal Families, Systems & Health. He lives with his wife and their two children in Swarthmore, Pennsylvania.
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