How to Use This Guide

What This Guide Offers

• Insights into meaning and hope, offered by those who have made this journey
• An understanding of the opportunities and challenges of this time in life
• Practical caregiving instructions
• Insights into emotional and spiritual issues
• Ideas for creating meaningful conversations
• Guidance to address conflict and unresolved issues
• An explanation of common physical changes
• Suggestions to maximize energy and mobility
• Ideas for adapting to a changing appetite
• Information on common pain medications, and guidance for medication management
• An explanation of hospice and the services it offers
• Safety tips
• An exploration of care settings outside the home
• Descriptions of supportive therapies to improve comfort and quality of life
• Suggestions for managing care if hospice service is not available
• Lists of resources for additional information or support

How to Use This Guide

Some chapters address the needs of individuals coping with declining health. Other chapters focus on the challenges faced by loved ones and caregivers. Many chapters offer information that may be helpful to everyone involved in the end of life transition. You do not need to read the entire guide. Read only what you feel will be of value to you.

To locate the information you need, read “How This Guide Is Organized” below, then turn to the Table of Contents and select the topic of interest to you. Chapters can be read in any order.

Next, read the brief chapter, which explores the practical concerns and emotional factors unique to that issue. In most cases, both must be addressed to achieve a real solution. Then review the list of suggestions, tools, or discussion questions at the end of that chapter to help you develop your own solution.

Explanation of Terms

For each of us, the word family holds a different meaning. In this guide, family applies to whomever you, the reader, define as your family, and may include close friends, a partner, relatives, pets, or other loved ones.

Just as we define our family, we also define our own spirituality. In this guide, spirituality refers to how we view ourselves, our sense of being within a broader context. Regardless of our culture, beliefs, or religious traditions, we ask common questions and encounter common phenomena that may influence our views of our existence. This guide presents an objective account, allowing you to gain insights into these experiences while applying your own beliefs to determine meaning for you.

In keeping with hospice practices, this guide does not advocate any specific religious points of view.

Consciousness can mean both “active consciousness,” what we commonly think of as being awake, and “awareness,” which can occur without our being awake.

How This Guide Is Organized

Part I: What Will Happen? The Spiritual Journey

This section offers information that may be helpful to individuals coping with declining health, their loved ones, and caregivers.

In this section you’ll learn about the special awareness, communications, and visions some people experience before passing. Information about these occurrences is offered to help you understand what you may experience, or what your loved ones might witness during your final days. These occurrences happen frequently and are well documented in professional hospice literature. They are consistent in theme, regardless of the cultural, spiritual, or religious practices of those who experience them. They may be the result of the subconscious emerging; they may have a spiritual origin, or they may have other causes. No one knows why they occur, or what they mean. Only you can decide what they might mean for you.

Part II: What Will Happen? The Physical Journey

This section offers information that may be helpful to individuals coping with declining health.

In this section you’ll learn what this journey may be like for you. You’ll learn what physical and emotional changes you may experience, and discover tools to cope with these changes. You’ll also learn about some of the legal and practical issues you and your loved ones may face, and ways to address them. Most chapters are followed by a list of suggestions, tools, or other resources to help you develop a solution that reflects your unique needs and values.

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

This section offers information that may be helpful for loved ones and caregivers. Individuals coping with declining health may find value in some of this material, as well.

In this section you’ll learn how to adapt to physical decline. You’ll find suggestions to maximize mobility, energy, and safety; advice for adapting to a changing appetite; tips for gathering and organizing help; and information about available resources, including hospice. You’ll learn about how to manage communication and minimize conflict within your family. You’ll also find guidance for selecting a care facility, if caregiving at home is no longer possible. Each chapter is followed by extensive checklists and other tools for quick and easy reference.

Part IV: Closure: Will I Die a “Good” Death?

This section offers information that may be of value to individuals seeking meaning as their life nears its end, and to family members supporting a loved one through this process. Not all chapters will be relevant to your situation, so read only what you feel applies to you.

In this section you’ll explore some of the challenges people may face as they review their life and search for meaning. You’ll discover how others have addressed these issues, and how they resolved them. You’ll find practical tips as well as discussion questions to help you explore your own feelings to achieve resolution, meaning, and peace.

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

This section offers information that may be especially helpful for loved ones and caregivers. To better understand and prepare for the issues presented in this section, consider reading these chapters before the final days.

In this section you’ll learn how to care for someone in the final days. You’ll find information about physical changes that may occur, and what these changes mean. You’ll learn how to keep your loved one comfortable, and how to recognize if she’s comfortable, even if she can’t tell you how she feels. You’ll also discover what you can do at the time of passing to honor your loved one and create a special memory, if you choose.

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

This section offers information that may be helpful to loved ones beginning their grieving process.

This section provides an introduction to the journey of grief, an ever-changing process that each of us experiences in our own way. You’ll learn about common physical and emotional changes you may experience, as well as tools and resources to help you understand and cope.

Part VII: Living

This section offers information that may be helpful to anyone affected by loss, and can be read at any time during this journey.

This section relates some of the remarkable lessons I’ve been offered about life and living from individuals and families who have shared their journey with me. I share their courage, grace, and wisdom with you, in hopes that you, too, will discover your own path to meaning, hope, and peace.