CARING FOR DYING LOVED ONES: A HELPFUL GUIDE FOR FAMILIES AND FRIENDS

BY JOANNA LILLIAN BROWN

TABLE OF CONTENTS

CHAPTER ONE
TO THE READER 1
How to Use This Book 1
Three Notes About Style 1
If You Are Already a Caregiver 2
If You Are Not Yet a Caregiver 2
If Your Concern is Primarily About a Child 3
A General Piece of Advice 3

CHAPTER TWO
TAKING YOUR OWN TEMPERATURE AS A CAREGIVER 5
Cool: Fine Now, but Looking Ahead to Future Responsibilities 5
Learning While You Can 6
Look at and Label Photographs 6
Record Their Stories via Tape Recording, Video Recording, or Taking Notes 6
Not Fully Living, but Not Yet Dying 7
Loss of Prior Activities and Interests 7
New Interests or Interests Intensifying 8
Working with Diminished Abilities in New Ways 8
Invest Your Time in Thinking About and Preparing for the Future 9
Warm: Facing Increasing Challenges of Caring for Someone 11
Shifting Roles and Responsibilities 11
Hot: Dealing with a Sudden Health Crisis 18
Call an Emergency Family Meeting 18
Request and Review Your Loved One’s 18
Medical Records Clear the Deck of Other Responsibilities 20
Feverish Delirium: Being “In the Thick of It” and Feeling Overwhelmed 22
Find Ways to Get More Support and Bring Balance to Your Life 23

CHAPTER THREE
WHAT DO I WANT MY ROLE TO BE AS A CAREGIVER? 25
Factors to Consider 25
Your Own Health 26
Your Own Attitudes about Death and Dying 25
Peer Support and Counseling 26
Places on the Caregiving Spectrum 28
Being the Primary Caregiver 28
Responsibilities and Accountabilities 29
Helping From Afar 29
Respecting, Appreciating, and Supporting the Primary Caregiver 30

CHAPTER FOUR
WHAT DOES IT MEAN TO BE A GOOD CAREGIVER FOR SOMEONE WHO IS DYING? 33
Taking the “My Wishes” Survey Yourself to Prepare You to Talk With Your Loved One About Her Wishes for End of Life Care 33
Using the “My Wishes” Survey to Talk to Your Loved One About Their Wishes for End of Life Care 44

CHAPTER FIVE
COMMUNICATION 55
Family Meeting 55
Doing an Intervention 56
Devising a “Plan B” 57
Communication Tools: CaringBridge, Email Lists, and Other Ways to Stay in Touch 58
Dealing with Family Difficulties 59
When Conflicts Cannot Be Resolved 60
Finding Your Own North Star 60

CHAPTER SIX
THE "DO IT NOW" LIST 63
Health Care Proxy and Living Will 65
Sample Living Will Language Will 68
Durable Power of Attorney 69
Creating a List of Relatives and Friends 69
Writing an Obituary 72
Obituary Draft Form Burial, Cremation, Funeral, Visiting Hours, Memorial Service 79
Religious Tradition and House of Worship 81
Pre-Arranging Funeral Services 82
Funeral Planning Checklist 86
Cemetery Burials and Green Burials; Burying or Scattering Ashes 87
Veterans’ Benefits 88
Headstone 89
Social Security Benefits 90
Personalizing Memorial Services 90
Reception 92

CHAPTER SIX
HOSPICE CARE 93
Comparing Hospice Care and the Standard Medical Model 93
When to Seek Hospice Care 94
24 Hour a Day, On-call Support 96
Where Hospice Care Can Be Delivered 96

CHAPTER EIGHT
WHERE TO CARE FOR YOUR LOVED ONE 97
Staying at Home 99
At Home Equipment Needs 101
Continuum of Care Facilities 103
Independent Living 103
Assisted Living 104
Skilled Nursing 105
Loss of Control on the Part of Residents and Inadequate Staff Response Times 109
Nutrition and Hydration 110
Pool Staff and Other Staffing Problems 112
Questionable Safety of Patients 113
Infection Control 115
Loss of Physical Control 116
Increase in Psychological Problems 117
If a Nursing Home Is the Only or Best Choice 118
Quality at the End of Life Depends on Time Spent with Your Loved One 120
Form Relationships with Nursing Home Staff 120
Form a Self-Help Support Network of Family Caregivers 121
Change Comes, Though Slowly 122

CHAPTER NINE
FINANCIAL CONSIDERATIONS 125
Costs of At Home Care 125
Costs of Assisted Living Care 126
Costs of Nursing Home Care 126
Costs of Hospice Care 126
Planning Ahead for Medicare and Medicaid 127
Long Term Care Insurance – Pros and Cons 127

CHAPTER TEN
SIX SURPRISES ABOUT THE DYING PROCESS 129
Dress Rehearsals for Dying (False Alarms) 129
The Flickering of the Flame 130
Animals Know Before We Do 130
Communicating with the Beyond 131
The Spiritual Aspect of Witnessing Someone Die 131
Medical Surprises 132

CHAPTER ELEVEN
THE FINAL DAYS, HOURS, AND MINUTES 135
Telling Someone That They Are Dying, or Not? 135
What Do Dying People Eat? 137
Music and Dying 138
Watchful Witnessing and Pain Management Decisions 139
Physical Changes 140
Saying What You Need to Say 140
Being Present at the Moment of Death and Rituals to Consider 141
If You Have to Wait for the Funeral Director to Arrive 143

CHAPTER TWELVE
RIDING THE ROLLER COASTER OF GRIEF 145
Beginning to Grieve Your Loved Ones Before They Are Gone 145
Coping in the Days Following the Death 146
Exhaustion, Disorientation, or Numbness 147
Sadness, Anger, Aloneness, and Other Strong Emotions 148
Feeling the Presence of Your Departed Loved One 148
Honoring your Grieving Process 149

CHAPTER THIRTEEN
NOW WHAT? HOW TO USE YOUR KNOWLEDGE TO HELP OTHERS 151
Become a Hospice Volunteer 151
Join a Support Group, Online Community, or Blog 151
Become a Social Change Activist 152
Some “Big Picture” Ideas 154
RESOURCES 157
Appendix A: Sample Language for a Living Will 167
Appendix B: Additional Sample Language for a Living Will 171
AFTERWORD—WHY I WROTE THIS BOOK 173
ACKNOWLEDGMENTS 177