Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions
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What’s going to happen? How will we manage? There are things I still want to do. I’m afraid… As death approaches, both patient and family must cope with grief, pain, and seemingly unanswerable questions. It’s a time of challenge, of concerns. But, as hospice nurse Karen Whitley Bell reminds us, it also offers an opportunity to explore and rediscover the fuller, richer meaning of life. Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. She discusses the physical, emotional, and spiritual journey a dying person goes through; care-giving during this difficult period; closure, and loss and the lessons it teaches us. In addition to her warm, yet knowledgeable voice, readers get firsthand accounts of experiences in hospice care, making Living at the End of Life accessible, reassuring, and indispensable. Publishers Weekly Starred Review. As a hospice nurse for 16 years, Bell understands the concept of a "good death." A daily witness to fatal illness and end-of-life moments, Bell's powerful message is aimed at making sure the final months or days of a patient are well-lived, marked by peace, comfort, and a chance to say goodbye. Illustrating the tenets and benefits of palliative care with firsthand accounts of her patients, Bell manages, as stated by American Academy of Hospice and Palliative Medicine co-founder Charles G. Sasser in his foreword, to place readers "at bedsides during one of the most intimate of life's dramas." As such, she delivers a wealth of useful information on pain management, choosing a hospice and general day-to-day care giving in a powerful, hard-to-forget way. Straightforward and empathetic, with an easy-to-navigate style, Bell details what to expect in both physical and spiritual terms, including practical considerations as well as ways to find closure and cope with loss. Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
Foreword viiiIntroduction xiPart I What Will Happen? The Spiritual Journey 1What Will It Be Like? 2An Overview of the End-of-Life JourneyWill I Be Alone? 6Will Others Be with You in Your Final Days or Hours?Will I Choose My Time? 9Does the Mind or Spirit Influence When We Pass?Will I Be Aware? 13The Possibility of Consciousness, Even If We're Not Awake or ResponsiveI Had This Dream 18A Description of Common Dream ThemesPart II What Will Happen? The Physical Journey 21What Should I Do Now? 22Expressing Your WishesHow to Complete Advance Directive and Medical Power of Attorney FormsWill I Be in Pain? 26How Pain Medication WorksWhen to Use ItWhat to Tell Your DoctorHow to Minimize Side EffectsUnderstanding Common Pain Medication MythsI Don't Want to Be a Burden 33Ways to View and Cope with DependenceI Wish I Had More Energy 37Tools to Maximize Energy and MobilityDo I Want to Help Plan My Remembrance Service? 43Ways to Explore This Topic with Loved OnesPart III Caregiving as a Family: How Do We Manage? 48I've Never Done This Before 50An Overview of CaregivingWhat Does Hospice Do? 57An Explanation of ServicesWhy Early Access to Hospice Can Help You and Your Loved OnesWhat If We Don't Have Hospice Care? 66Tips for Accessing ResourcesMaking the Most of Your Visit with Your DoctorGuidance for Managing Care in a Rural CommunityI Can't Do This Alone 71Suggestions to Gather, Organize, and Manage Support from Friends, Neighbors, and Loved OnesHow Can I Keep Him Safe? 76Understanding and Reducing Risks for Both the Individual and CaregiverHow Do I Bring the Bathroom toHim? 85Options for Toileting and BathingI Don't Know What to Say 92Insights to Achieve a Meaningful VisitHe Doesn't Want to Eat 96Understanding and Adapting to a Changing AppetiteIdeas for Adapting Meal Schedules for People with Memory ImpairmentSuggestions for Easy-to-Digest Foods and BeveragesFor Loved Ones Who Live Far Away: What Can I Do? 104Staying Informed and SupportiveDeciding When to VisitI'm Exhausted! Exploring Care Settings Outside the Home 112Choosing a Care Facility, If Needed, and Paying for CarePart IV Closure: Will I Die a "Good" Death? 123I'm Afraid to Lose Control 124Examining the Fear of Loss of Control and Discovering Ways to Achieve PeaceI'm Not Ready 131Making the Most of the Time You HaveIs It Too Late to Make Amends? 137Achieving Reconciliation, Forgiveness, and HealingI'm Ready-Why Am I Not Going? 141Understanding and Achieving Acceptance and PeaceWhy Me? Why Am I Being Punished? 146Reconciling Mortality with Your Religious BeliefsWe Always Thought We'd Have More Time 152Realizing Dreams and Appreciating the Choices You Have MadePart V For Loved Ones and Caregivers: Sharing the Final Days 157How Do We Keep Her Comfortable? 158Giving Medication When Your Loved One Can No Longer Swallow Recognizing If Your Loved One Is in Pain Preventing DiscomfortHow Do I Let Go? 166Saying Good-bye: Helping Your Loved One Achieve PeaceHow Will We Know When the End Is Near? 170Changes You May SeeUnderstanding What These Changes MeanI Want to Be with Her When She Passes 179Meeting Your Loved One's Needs...and Yours...in the Final DaysIdeas to Create a Peaceful EnvironmentI Want My Last Memory to Be a Good Memory 184What to Do at the Time of DeathIdeas for Honoring and Caring for Your Loved One at the Time of DeathPart VI How Will I Go On? Coping with Loss 189I Feel So Alone 190An Introduction to Grief and BereavementHow Are You? 197How Love and Loss Shape Who We ArePart VII Living 201Is There Life after Death? 202Does It Influence How I Live Now?Can I Choose How I Live? 205AppendicesAppendix A Additional Resources 210Appendix B Important Documents to Gather 215Appendix C Common Pain Medications 216Appendix D Supportive Therapies 218Acknowledgments 232Index 236About the Author 240
