Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions »

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.
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Foreword viii

Introduction xi

Part I What Will Happen? The Spiritual Journey 1

What Will It Be Like? 2

An Overview of the End-of-Life Journey

Will I Be Alone? 6

Will Others Be with You in Your Final Days or Hours?

Will I Choose My Time? 9

Does the Mind or Spirit Influence When We Pass?

Will I Be Aware? 13

The Possibility of Consciousness, Even If We're Not Awake or Responsive

I Had This Dream 18

A Description of Common Dream Themes

Part II What Will Happen? The Physical Journey 21

What Should I Do Now? 22

Expressing Your Wishes

How to Complete Advance Directive and Medical Power of Attorney Forms

Will I Be in Pain? 26

How Pain Medication Works

When to Use It

What to Tell Your Doctor

How to Minimize Side Effects

Understanding Common Pain Medication Myths

I Don't Want to Be a Burden 33

Ways to View and Cope with Dependence

I Wish I Had More Energy 37

Tools to Maximize Energy and Mobility

Do I Want to Help Plan My Remembrance Service? 43

Ways to Explore This Topic with Loved Ones

Part III Caregiving as a Family: How Do We Manage? 48

I've Never Done This Before 50

An Overview of Caregiving

What Does Hospice Do? 57

An Explanation of Services

Why Early Access to Hospice Can Help You and Your Loved Ones

What If We Don't Have Hospice Care? 66

Tips for Accessing Resources

Making the Most of Your Visit with Your Doctor

Guidance for Managing Care in a Rural Community

I Can't Do This Alone 71

Suggestions to Gather, Organize, and Manage Support from Friends, Neighbors, and Loved Ones

How Can I Keep Him Safe? 76

Understanding and Reducing Risks for Both the Individual and Caregiver

How Do I Bring the Bathroom toHim? 85

Options for Toileting and Bathing

I Don't Know What to Say 92

Insights to Achieve a Meaningful Visit

He Doesn't Want to Eat 96

Understanding and Adapting to a Changing Appetite

Ideas for Adapting Meal Schedules for People with Memory Impairment

Suggestions for Easy-to-Digest Foods and Beverages

For Loved Ones Who Live Far Away: What Can I Do? 104

Staying Informed and Supportive

Deciding When to Visit

I'm Exhausted! Exploring Care Settings Outside the Home 112

Choosing a Care Facility, If Needed, and Paying for Care

Part IV Closure: Will I Die a "Good" Death? 123

I'm Afraid to Lose Control 124

Examining the Fear of Loss of Control and Discovering Ways to Achieve Peace

I'm Not Ready 131

Making the Most of the Time You Have

Is It Too Late to Make Amends? 137

Achieving Reconciliation, Forgiveness, and Healing

I'm Ready-Why Am I Not Going? 141

Understanding and Achieving Acceptance and Peace

Why Me? Why Am I Being Punished? 146

Reconciling Mortality with Your Religious Beliefs

We Always Thought We'd Have More Time 152

Realizing Dreams and Appreciating the Choices You Have Made

Part V For Loved Ones and Caregivers: Sharing the Final Days 157

How Do We Keep Her Comfortable? 158

Giving Medication When Your Loved One Can No Longer Swallow Recognizing If Your Loved One Is in Pain Preventing Discomfort

How Do I Let Go? 166

Saying Good-bye: Helping Your Loved One Achieve Peace

How Will We Know When the End Is Near? 170

Changes You May See

Understanding What These Changes Mean

I Want to Be with Her When She Passes 179

Meeting Your Loved One's Needs...and Yours...in the Final Days

Ideas to Create a Peaceful Environment

I Want My Last Memory to Be a Good Memory 184

What to Do at the Time of Death

Ideas for Honoring and Caring for Your Loved One at the Time of Death

Part VI How Will I Go On? Coping with Loss 189

I Feel So Alone 190

An Introduction to Grief and Bereavement

How Are You? 197

How Love and Loss Shape Who We Are

Part VII Living 201

Is There Life after Death? 202

Does It Influence How I Live Now?

Can I Choose How I Live? 205

Appendices

Appendix A Additional Resources 210

Appendix B Important Documents to Gather 215

Appendix C Common Pain Medications 216

Appendix D Supportive Therapies 218

Acknowledgments 232

Index 236

About the Author 240