Compassion A Publication of Compassus
Vol. 7 Issue 2
DAVID KESSLER ON ‘THE GIFT OF GRIEF’
THE 5 STAGES OF GRIEF AND OTHER LIES
The Grief Issue With the right tools, you can find your personal path to healing
JOURNEYING TOWARD TENDER MEMORIES
A WINK FROM HEAVEN
Compassion Everyday Compassion is published periodically by Compassus. Please address any comments or questions to: Editor, Everyday Compassion Magazine, Compassus, 10 Cadillac Dr., Suite 400, Brentwood, TN 37027
Carol Fite Lynn Director of Communications
We Want to Hear from You You have plenty of stories to tell and we’d like to hear them. Is there a particular patient who was extra special? Does your facility have wonderful pet therapy? Do you know of a caregiver who has found a unique way to manage the demanding work of caregiving? We’re working on the next issue of Everyday Compassion and we’d like you and your stories to be part of it. We also welcome your questions, comments, feedback, and suggestions. Email us at email@example.com. And don’t forget: • We love our military veterans, and we always want stories about Compassus veterans. • Compassus colleagues have some of the biggest hearts around, and we want to share your uplifting Dream Team stories. Tell one on yourself or brag about a colleague. • Nominate your medical director to be chosen for our Physician Spotlight.
ASSISTANT EDITOR Sloane Sharpe Director of Branding
CONTRIBUTING WRITERS Amanda Aguilar
Team Coordinator, Denton, Texas
RN, Denver, Colo.
Tom Barthel Director of Clinical Services, Lansing, Mich.
Outpatient Palliative Care Nurse Practitioner, Columbia, Tenn.
Argus Institute, Colorado State University
Chaplain/Bereavement Coordinator, Prescott Valley, Ariz.
Carol Davis Locomotion Creative
Rebecca Ross Volunteer, Willingboro, N.J.
Director of Sales, Denver, Colo.
Bereavement Coordinator/ Volunteer Coordinator, Green Bay, Wis.
Licensed Clinical Counselor, Writer And Grief Advocate
Jennifer Doyle Bereavement Coordinator, Metairie, La.
Lynne Duffield RN, BSN, Joplin, Mo.
Heather Spickard RN, Springfield, Ill.
Joseph S. Wadas Bereavement Coordinator/ Chaplain, Savannah, Ga.
Volunteer, Osage Beach, Mo.
Social Worker/Grief Group Facilitator, Casa Grande, Ariz.
Bereavement Coordinator, Director/Founder Of Camp Good Grief, Auburn, Ala.
Mike Fritz Bereavement Coordinator, Central Texas
Bereavement Coordinator, Flint, Mich.
Dennis Zimmerman Chaplain, Westlake, Ohio
CREATIVE and LAYOUT
Locomotion Creative, LLC
Copyright 2016 © Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the written consent of Compassus. e-mail comments to: firstname.lastname@example.org
To my colleagues, friends and associates, One autumn day in 1964, Elisabeth Kübler-Ross, psychiatrist and a pioneer in near-death studies, prepared a two-part lecture. The first part looked at how various cultures approach death. For the second, she brought Linda, a 16-year-old dying of leukemia, to class to talk with the students about how she felt. The students were fascinated, yet nervous, with the presentation. They avoided dealing with the source of their discomfort — the shock of seeing an articulate, lovely young woman on the verge of death — by focusing on clinical questions about her symptoms. Soon after, Kübler-Ross took a job at the University of Chicago, where she began a series of seminars, interviewing patients about what it felt like to die. She began to work on a book outlining what she learned in her work with the dying, which came out in 1969. Her argument was that patients often knew that they were dying and preferred to have others acknowledge their situation: “The patient is in the process of losing everything and everybody he loves. If he is allowed to express his sorrow he will find a final acceptance much easier.” And she concluded that the dying underwent five stages: denial, anger, bargaining, depression and acceptance. The “stage theory,” as it came to be known, quickly created a paradigm for how Americans die. It eventually created a paradigm, too, for how Americans grieve. We have dedicated this entire issue of Everyday Compassion to the subject of grief because it is so important to address. Within the pages, we address several facets of grief, such as navigating the five stages in your own way, handling complicated grief and ways to find healing. We hope you find it helpful. As always, we are interested in your reaction to our words, and we are eager to hear and share your stories.
Jim Deal, CEO
TABLE OF CONTENTS ON TOPIC
The Grief Issue Grief; everyone experiences it at some point in his or her life. There is no “right way” to grieve, but with the right tools, those who have suffered loss can work through the grief in their own way toward healing.
Small steps result in long strides toward healing.
Giving patients what they need, rather than what we think they need.
Equine therapy helps to balance emotions.
Small steps toward healing
The gift of grief An excerpt from On Grief and Grieving.
The 5 Stages of Grief and Other Lies The idea that grief is orderly and predictable is just not true.
Relieving stress reactions to grief Grieving can take a toll both physically and mentally.
Putting the patient first
Healing with horses
A bucket of grief How to dip it out, a little at a time.
Last desires of the heart
Grief in the digital world
Grief can be a beautiful and healing process.
The internet can’t replace real human interaction.
A hospice nurse knows grief firsthand.
The painting was a coincidence. Or, was it?
A Compassus nurse honors her father’s legacy through her own life.
Helping the littlest ones Allow children to grieve their own way.
How animals grieve
A volunteer reflects on her part in the circle of life.
Humans are not the only ones who mourn.
A wink from heaven
The Deepest Grief
Inquiring about final wishes may be one of the most important things we can do.
‘The Fabric of Life’ A Compassus bereavement coordinator wrote a poem for grieving families.
A Compassus chaplain works through his grief by writing poetry.
Turning grief into inspiration
Lonely Hearts Club
In Every Issue
The List Dealing with business details after loss.
Complicated cases require more than conventional counseling.
Joining a grief support group is a place to receive strong support.
The Dream Team Two final wishes happen just in time for Independence Day.
How Compassus helped a family through illness, death and beyond.
When caregivers lose a loved one, they may also lose a sense of purpose.
Physician Spotlight Featuring Paul E. Tatum III, MD.
Helping a grieving son
Empty nest syndrome
HOPE AFTER LOSS PAM SENGSTOCK, BEREAVEMENT COORDINATOR AND VOLUNTEER COORDINATOR FOR COMPASSUS – GREEN BAY, REMINDS MOURNERS TO RECOGNIZE THEIR SMALL STEPS FORWARD.
Small steps result in long strides toward healing
As you navigate through grief, know that there is progress, hope and growth.
Through the last few months you have been processing the loss of your loved one in many ways: In the daily activities you shared; in the smells that remind you of your loved one; and when you’re out and catch a glimpse of families still together. In looking back, you must see the progress you have made since those first traumatic days. It wasn’t that long ago that you were in a state of shock and numbness. But now, mornings may not seem as surreal with your having to remind yourself, “It is real; they really are gone.” Instead, when you wake, you are aware that they’re gone. As you go about your day, small reminders no longer cause you to break down or react painfully. At day’s end, loneliness may not weigh as heavily as it once did and your sleep once again is long and restful. This is the grieving process. Although the steps are small, it is progress nonetheless. Take note of the progress you’ve made since starting this sad journey and how strong you’ve become. It takes courage and strength to continue your daily activities when you feel your heart is breaking, your body is exhausted and your thoughts are cloudy. You have done it. You have withstood in the face of something you didn’t know you could. Perhaps you’ve noticed the sun shining through your window in a
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way you haven’t before. The things that once irritated you don’t seem as bothersome anymore, because the quote, “Don’t sweat the small stuff,” has become your reality. And as you make these small steps forward, you will find true meaning in not only the value of your loved one’s life but the value of your own: • For widows and widowers, a sense of empowerment, confidence and independence may come from tasks you must do now that your spouse is gone. This will come and go, as all grief processes do, but eventually you may take pride in your ability to do it. • A child who has lost a parent may find some sense of relief, particularly if they have been in the caregiver role for a long time. This is not a negative thing; it is very normal. As you face the future without parental presence, you will raise your own children or grandchildren cherishing the values your parents instilled in you. It may become more important to pass on traditions or lessons that you value as a part of your past. • Siblings who have lost a brother or sister likely will reflect more on their past, with shared childhood memories, and their future, with reflections on mortality. This is very normal and although painful, can help to reinforce the values you want to pass on to those you love. In all cases, the death of a loved one is painful. But as you navigate your way through, please know that there is progress, hope and growth. Losing a loved one can serve as a pivotal point in your life to clarify values and create an appreciation for those who are still with us, and to show what we, as loving beings, are capable of.
ON GRIEF AND GRIEVING DAVID KESSLER, ONE OF THE WORLD’S FOREMOST EXPERTS ON DEATH AND GRIEF, HAS WORKED SO CLOSELY WITH COMPASSUS TO RAISE AWARENESS FOR GREATER ACCESS TO HOSPICE CARE THAT COMPASSUS ANNUALLY PRESENTS THE DAVID KESSLER AWARD FOR OUTSTANDING ACHIEVEMENT IN INCREASING PATIENT ACCESS TO THE HOSPICE BENEFIT IN HIS HONOR. HE CO-AUTHORED BESTSELLER ON GRIEF AND GRIEVING WITH THE LEGENDARY ELISABETH KÜBLER-ROSS. WITH HIS PERMISSION, A BRIEF PASSAGE IS EXCERPTED HERE.
THE GIFT OF GRIEF Grief is one of life’s passages we all experience. It is one of life’s equalizers, a shared experience for every man and woman who lives. But though it is a shared experience, most of us go through it as little islands of pain. Most of the people around us don’t know how to help. We want help but probably wouldn’t even know what that help would look like. We just know a major loss has taken place. We know we can’t bring back that loss and we can’t take away the pain. Our pain makes others very uncomfortable. Our pain reminds them of their own, it reminds them of how precarious their lives are, too. It is their own pain and fear that causes others to say such things as, “Get over it, already,” or “It’s been six months, are you going to grieve forever?” … The reality is that you will grieve forever. You will not “get over” the loss of a loved one; you will learn to live with it. You will heal, and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same, nor would you want to. The time we take following a loss is important in grief and grieving as well as in healing. This gift of grief represents a completion of a connection we will never forget. A time of reflection, pain, despair, tragedy, hope, readjustment, reinvolvement and healing. The time after a significant loss is full of the feelings that we usually
have spent a lifetime trying not to feel. Sadness, anger and emotional pain sit on our doorstep with a deeper range than we have ever felt. Their intensity is beyond our normal range of human emotions. Our defenses are no match for the power of the loss. We stand alone with no precedent or emotional repertoire for this kind of loss. We have never lost a mother, father, spouse or child before. To know these feelings and meet them for the first time brings up responses from draining to terrifying and everything in between. We don’t know that these foreign, unwelcome, intense feelings are part of the healing process. How can anything that feels so bad ever help to heal us? With the power of grief comes much of the fruits of our grief and grieving. We may still be in the beginning of our grief, and yet, it winds its way from the feelings of anticipating a loss to the beginnings of reinvolvement. It completes an intense cycle of emotional upheaval. It doesn’t mean we forget; it doesn’t mean we are not revisited by the pain of loss. It does mean we have experienced life to the fullest, complete with the cycle of birth and death. We have survived loss. We are allowing the power of grief and grieving to help us to heal and to live with the one we lost. That is the Grace of Grief. That is the Miracle of Grief. That is the Gift of Grief.
David Kessler is one of the world’s foremost experts on death and grief.
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HANDLING GRIEF YOUR WAY MEGAN DEVINE, A LICENSED CLINICAL COUNSELOR, WRITER AND GRIEF ADVOCATE, EXPLAINS HOW GRIEF IS NEITHER ORDERLY NOR PREDICTABLE.
THE 5 STAGES OF GRIEF AND OTHER LIES That Don’t Help Anyone The stages of grief were developed by Elisabeth Kübler-Ross more than 30 years ago, as she listened to and observed people living with terminal diagnoses. Since the publication of her book, On Death and Dying, the “stages of grief,” as they are known, have become the gauge by which all grief is measured. What began as a way to understand the emotions of the dying became a way to strategize grief: The griever is expected to move through a series of clearly delineated stages, eventually arriving at “acceptance,” at which time their “grief work” is complete. Denial, anger, bargaining, depression, acceptance. I bet you know what the stages are, even if you don’t think of yourself as much of a psychology-type person. The stages are taught in introductory college courses, and were taught back when I was in hospice training. The stages are taught in grief and loss workshops. They come up in pop psychology and in clinical, scientific studies. The stages of grief are everywhere. This means that many people, even professional psychologists, believe there is a right way and a wrong way to grieve, that there is an orderly and predictable pattern that everyone will go through, and if you don’t progress correctly, you are failing at grief. You must move through these stages completely, or you will never heal. Everyday Compassion Vol. 7 Issue 2 5
There is no predictable pattern, no linear progression and no clear-cut stages of grief.
The stages of grief were not meant to tell you what you feel, what you should feel and when exactly you should feel it. They were not meant to dictate whether you are doing your grief “correctly” or not. They were meant to normalize a deeply notnormal time. They were meant to give comfort. Ms. Kübler-Ross’ work was meant as a kindness, not a cage. This is a lie. No matter how much the woman Death and its aftermath is such herself regretted the misuse of her a painful and disorienting time. I stages, they are firmly embedded in understand why people — both the our cultural ideas of the right and griever and those witnessing grief — wrong ways to grieve. The stages are want some kind of road map, a clearly used as a corrective reproach, the delineated set of steps or stages that process of grief turned into a race: will guarantee a successful end to Even the stages themselves are not the pain of grief. The meant to be lingered truth is, grief is as in. If someone is individual as love: identified as being every life, every path, in a stage (especially In her later years, is unique. a messy one, like Elisabeth KüblerThere is no anger), they need to predictable pattern, “get through it” as Ross wrote that she and no linear quickly as possible regretted writing progression. Despite so they can move the stages the way what many “experts” on to the end goal say, there are no of acceptance. that she did, that stages of grief. people mistook them Conversely, whatever In her later stage someone is in, as being both linear years, Elisabeth they must stay there Kübler-Ross wrote until they are done, and universal. that she regretted otherwise their grief writing the stages work will suffer. the way that she For your sake, did, that people mistook them as and the sake of those around you, being both linear and universal. you must do your grieving fast, do it Based on what she observed while correctly, and be done. working with patients given terminal Except that this isn’t how diagnoses, Ms. Kübler-Ross identified grief goes. five common experiences, not five Grief is the natural response when required experiences. Her stages, someone you love is torn from your whether applied to the dying or those life. It is a natural process: a process left living, were meant to normalize of the heart being smashed and and validate what someone might broken open, of reality shifting and experience in the swirl of insanity hurling in place. It cares nothing for that is loss and death and grief. order or stages.
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The Non-Rules of Grief The truth is, you can’t force an order on pain. You can’t make it tidy or predictable. The stages of grief are a net thrown over a fogbank — they help neither to define nor contain. To do grief “well” depends solely on individual experience. It means listening to your own reality. It means acknowledging pain and love and loss. It means allowing the truth of these things the space to exist without any artificial tethers or stages or requirements. There is no set pattern, not for everyone and not even within each person. Each grief is unique, as each love is unique. There are no stages capable of containing all the experiences of love and pain. There are no stages of grief. If we take away this bedrock, what remains? What do we do without those landmarks? Remember that there is no “closure.” Grief is part of love, and love evolves. Even acceptance is not final: It continuously shifts and changes. The truth is, you will seize up in the face of pain and soften into it, again and again, both things in rapid succession, and both things with silence in between. You’ll find ways to live inside your grief, and in doing so, it will find its own right place. Your love, and your grief, are bigger than any stage could ever be. The only way to contain it is to let it be free. As Ms. Kübler-Ross said in the last days of her life, “I am more than these five stages. And so are you.” Reprinted from The Huffington Post with permission of the author. You can find her at refugeingrief.com.
There is no finish line. This is not a race. Grief has its own lifespan, unique to you.
There is no time when pain and grief are completed; you grieve because you love and love is part of you. Love changes, but does not end.
What will happen, what can happen, as you allow yourself to grieve, is that you will move differently with pain. It shifts and changes: sometimes heavy, sometimes light.
Anger will happen. So will fear, peace, joy, guilt, confusion and a range of other things. You will flash back and forth through many feelings, often several of them at once.
Sometimes you will be tired of grief. You will turn away. And you’ll turn back. And you’ll turn away. Grief has a rhythm of its own.
Grief can be absolutely crazy-making. This does not mean you are crazy.
There is no way to do grief “wrong.” It may be painful, but it is never wrong.
In your own way, you’ll find ways to live inside your grief. Everyday Compassion Vol. 7 Issue 2 7
GRIEVING CAN TAKE A TOLL BOTH PHYSICALLY AND MENTALLY
Stress reactions to grief and how to relieve them Grieving can cause several kinds of stress reactions. They are normal reactions, and although painful, they are part of the healing process. They include:
PHYSICAL REACTIONS fatigue, insomnia, under-activity, hyperactivity, exhaustion, startle reactions, headache, digestive problems, thirst, visual difficulties, dizziness, weakness, nausea
COGNITIVE REACTIONS difficulty concentrating or problem-solving, flashbacks, difficulty making decisions, memory problems, isolation, limited attention span, confusion, heightened or lowered alertness, nightmares
Although it is normal to experience these reactions, there are things you can do to help yourself: ✔ Exercise ✔ Structure your time, keep busy ✔ Remind yourself you are normal ✔ Talk to people ✔ Keep your life as normal as possible ✔ Spend time with others ✔ Give yourself permission to feel bad ✔ Do things you enjoy, that make you feel good ✔ Eat right
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EMOTIONAL REACTIONS change in activity, withdrawal, emotional outbursts, loss or increase of appetite, alcohol consumption, and change in sexual functioning
Things NOT to do: ✘ Don’t overindulge in alcohol or drugs ✘ Don’t make life-changing decisions ✘ Don’t force yourself to do hated chores ✘ D on’t push yourself to get over it; allow yourself time to recover
PAYING IT FORWARD VICKIE FAULSTICH, A VOLUNTEER WITH COMPASSUS – OSAGE BEACH, REFLECTS ON HER PART IN THE CIRCLE OF LIFE.
ANGEL WATCH The Compassus volunteer coordinator had emailed, asking for a volunteer for an Angel Watch this evening as a patient was actively dying. I replied that I was available and was scheduled for the 7-9 p.m. shift. I became a volunteer after five of my own family members were helped by hospice. They were able to stay at home and be surrounded by loved ones when they crossed over. But this would be a new experience for me, because this person was in a nursing home and I would be by myself during this watch. Arriving at the nursing home shortly before my shift, the patient’s wife greeted me and gave me an update. She was very nice and thanked me for coming to stay with her husband while she got a break. She shared how she had told him all day that it was okay to let go and to go home to God because he had fought and struggled enough. The patient was unresponsive with very labored breathing. I explained to the patient that I was here to stay with him while his wife went home to get some rest. As I sat by his beside, I assured him every so often that I was here, and that it was okay for him to go home … his wife would be fine. About an hour and a half into my stay his breathing changed, becoming very shallow, about four to eight breaths per minute. I called the volunteer who was to replace me at 9 p.m. and informed her that it may not be long for this patient and she didn’t need to come. After I hung up, I did an internet search for prayers for the dying — I believed this to be God working
through me — and pulled my chair up close to him and softly read different prayers to him. It wasn’t long until he took his last breath. The nurse on duty confirmed that he had passed and called his wife and the hospice nurse. Out of respect, I did another internet search for hymnal music and played such comforting songs as “How Great Thou Art,” “Go Rest High on That Mountain” and “Amazing Grace.” The patient’s wife came in during a bagpipe version of “Amazing Grace,” and she was very touched. I left the room so she could be alone with her husband, returning later to stay with her until the hospice nurse arrived. She told me she could not believe how wonderful Compassus had been to her and her husband since entering hospice three days prior. I explained to her that many of us had been in her shoes, so we understood the need for help and compassion. My life has been so enriched by hospice workers and volunteers, I try to share my experience — as a family member and as a volunteer — everywhere I go. With hospice, it’s an honor and a privilege to witness God’s grace, the circle of life and a celebration of life.
Vickie Faulstich has had loved ones in hospice, so she understands the need for compassion.
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JUST BE THERE
REBECCA ROSS, A VOLUNTEER WITH LIFE CHOICE HOSPICE, WILLINGBORO, N.J., ENCOURAGES CAREGIVERS TO GIVE HOSPICE PATIENTS WHAT THEY NEED, RATHER THAN WHAT WE THINK THEY NEED.
Putting the patient’s needs above all else
A mutual love for Celtic music helped Rebecca Ross bring joy to a patient.
When Virginia Woolf said that “the beauty of the world, which is so soon to perish, has two edges, one of laughter, one of anguish, cutting the heart asunder,” it never is truer than when dealing with those close to the end of their lives. Experiencing a person’s final months, weeks or days with them is simultaneously a beautiful and heartbreaking experience. My story happened between my latest hospice patient and me. She was suffering from end-stage breast cancer and, as much as I loved her, she was very difficult. She was paranoid, angry and depressed.
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She had no family — no one to visit with her other than myself. At times it was very hard to get her interested in anything, or to even talk about anything. I found myself trying to fill the silence with things I thought she might want to hear — comforting words, positive encouragement. And then one evening while I was visiting with her, she mentioned that she loved Celtic music because she had grown up in Ireland. I told her that I also loved Celtic music, and that my favorite song was “The Star of the County Down.” Her eyes lit up and she starting singing that song, word for word. Choked with emotion, I sang along with her. Together we sang that song, and by the end of it we were both crying. It was one of the most beautiful moments I have ever experienced. The point is, she didn’t need me to hang around her talking about religion, death or her excruciatingly painful disease. What she needed was a hand to hold; someone to just be there for her; a person to share in life’s little joyous moments, however slight they may be. Dealing with grief, and helping family members deal with grief, demands that we put aside our sometimes overwhelming need to give the patient or family what we think they need, and instead simply be there for them, in whatever way they need us to be. This is, in my experience, a great way to handle grief. Life, despite its endless trials and tears, is a truly beautiful thing, as fleeting as it may be. And sometimes sharing those small pockets of joy is the best thing we can do for our patients and loved ones.
KAREN HYDEN, OUTPATIENT PALLIATIVE CARE NURSE PRACTITIONER IN COLUMBIA, TN, SHOWS HOW TO HELP PATIENTS AND FAMILIES WORK THROUGH THEIR GRIEF.
Good Grief “Good grief” is an oxymoron to most of us, because grief is most definitely not considered good. But I challenge you to consider that grief is good. When done well, grief can be a beautiful and healing process that creates strength and spiritual growth. But when it is repressed or avoided, grief has the power to create sickness and depression. So, how do we, as people who work every day with patients facing serious illness and the end of life, help them and their families grieve in a healthy way? We need to understand the specific grief of each of the patients and families we serve, because their reasons for grief are unique. The obvious grief we think of in palliative and hospice care is losing one’s life or a loved one. But, in palliative care, the grief I typically encounter happens before then. You may assume a family member is grieving the loss of a relationship with their mother who has dementia. That may be, but that son or daughter may also be grieving the loss of the lifestyle they had before they were full-time caregivers. Presumably, a patient is grieving because he was told he has less than six months to live, when in fact he is mostly grieving the loss of strength to go to his shop out back and “piddle around.” Men who were very strong and powerful before they became ill say they don’t feel like men anymore because they are bedbound. Some of them grieve the sports and hunting they can no longer do.
Women often grieve that they can’t keep up their homes anymore, or they grieve the loss of their homes because they are now in long-term care facilities. The beauty of what we can offer is the space for them to process what they are grieving. Take the time to really hear your patients. When they trust you, they will reveal what causes them grief. Don’t interject and don’t judge; just be a safe place for them to experience their losses, and then be thoughtful about ways to minister to their pain. One patient liked to fix old clocks, so I let him give me a tour of the clocks he fixed. Another once loved doing woodwork and made model cars and boats, so I listened as he told me how he did it. One of my patients once enjoyed doing art, so I brought him a coloring book and colored pencils to work on when he started feeling anxious. We have an amazing opportunity to make a huge impact in the lives of the patients and families we serve just by respecting and engaging in the grieving process. We all have different styles of interacting and patient care, so find the way that comes natural to you.
Give patients and families a safe place to grieve their losses, and be thoughtful in ministering to their pain.
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LYNNE DUFFIELD, RN, BSN, FOR COMPASSUS – JOPLIN, KNOWS FIRST-HAND THE STAGES OF GRIEF.
Jay and Lynne made the most of his time with their sons, Andrew, left, and Cole.
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Journeying through grief toward tender memories When I was 28 years old, my 30-year-old husband, Jay, was diagnosed with a rare form of brain cancer and given 18 months to live. Two sons and 16 years later, he died. Not a day passed after that initial diagnosis that I didn’t worry about his health. After his recurrence, he was admitted to hospice and I cried pretty much daily for three months. And I became intimately acquainted with grief. Elisabeth Kübler-Ross’ famous model of the five stages of grief took over my brain, my heart, my existence. I was furious at God for “allowing” this; furious at my husband for a disease over which he had no control; devastated at the thought of his leaving me on earth while he got to be perfectly fine in heaven; jealous of my friends who had healthy spouses; and generally mad at everyone else. I was infuriated, just because. I’m not sure I was ever in the denial stage. The evidence of his cancer was unquestionable; in his headaches, his lack of sleep, in the nausea and in the MRIs that showed the walnut-sized tumor in the middle of his brilliant brain. The irony of his illness was, and still isn’t, lost on me. He was a neurologist. With a brain tumor.
There was a time late in his illness when I bargained with God: “Please let him stay! I’d rather have him here with me, in all his near-quadriplegic and completely care-dependent misery, than be alone. Please, God! I’ll do anything! Just let him live!” Almost immediately after this came sputtering out of my mouth, I realized how selfish I sounded. Depression seemed to settle in quickly and dig itself in. There were many days after I got our 12- and 10-year-old sons off to school, I’d climb up on my bed next to his hospital bed and just stare into space. For hours. And cry. And watch back-to-back episodes of “Mythbusters” with him. The Duffield family’s intense grief for the loss of their husband and father has evolved into loving memories.
LEARNING TO ADJUST
Acceptance has come slowly but surely. In the year following his death, my day would frequently be interrupted by sudden bursts of inconsolable tears. Tears that stopped just as suddenly. Eventually I could go months, then years without those outbursts. My sons spent those first few months sleeping on a queen-sized air mattress on the floor of my bedroom where their father’s hospital bed had been. I was happy to have them nearby, as none of us wanted to sleep alone in our own rooms. Eventually, they asked me if I’d be okay with their moving back to their bedrooms — an initial sign of their acceptance. I’m not an expert, but my faith in God has allowed me to come to a couple of conclusions. First, we don’t know why things happen the way they do, but God didn’t cause this — or anyone else’s cancer. Bad things happen. Second, over time, and with grace, it’s possible for our grief to nurture positive actions. During my husband’s illness, God was planting the seed for my future.
I’m now a hospice nurse. And unbeknownst to me, my loss refined my gift of nurturing others with profound grief. In nursing school, one of the first lessons learned is that pain is subjective. More specifically, “pain is what the patient says it is.” Like pain, grief is subjective and, while grief follows a general pattern, it’s unique to every human. When preparing families for their grief journey, we can start by assessing the stages through which a family or individual has already traveled. It’s been eight years since Jay died. Our grief has been molded into our new normal as the boys have reached those teenage milestones in which fathers are needed, such as shaving. There are still days when we miss him dreadfully, but the tincture of time has tempered our sorrow and molded our grief into tender memories. Everyday Compassion Vol. 7 Issue 2 13
HELPING A CHILD TO GRIEVE AMANDA AGUILAR, RHIT, A TEAM COORDINATOR WITH COMPASSUS – DENTON, OFFERS WAYS TO HELP CHILDREN GRIEVE IN THEIR OWN WAY.
Helping the littlest ones handle loss For most adults, the grieving process is not foreign. Regardless of whether you have personally experienced a loss, most people know what to expect after the passing of a loved one. It is the children, grandchildren and greatgrandchildren who may need coaching during such a difficult time. Here are some suggestions for helping a child grieve: It’s up to adults to gently guide children through the loss of a loved one.
The most difficult time comes directly after a loved one’s death. Young children will likely be confused and unaware of what is happening. It is okay to let your child see you grieving; in fact, it can open the door for discussion. Allow the child to ask any and all questions that they may have, even if their questions make you feel uncomfortable. Answer all questions honestly and concretely, avoiding vague terms such as “passed away” or “went to Heaven.” This will eliminate the idea that the loved one may return.
Talk about the person who died. Share memories, look at photos and use their name. Respect that grief is different for everyone. Simply listen. Children want to be heard. They want their feelings to be validated. Listen to your child talk without offering advice. Discuss ahead of time how a funeral or memorial service works so there are no surprises. Giving children an idea of what to expect can make the decision easier on whether to attend. Let them decide if they want to attend.
Use language that is age-appropriate but direct.
Understand that children grieve in cycles and that it is okay to have periods where you are not feeling grief.
Let the child be a part of the process, giving him or her choices in how to say their goodbyes. Having choices is important for children to feel involved.
In grief, there is no timeline. Don’t allow your child — or yourself, for that matter — to feel rushed through this. Take all the time that is needed.
Loss is very hard, but knowing that you are not carrying the burden alone can mean the world, especially to a child. Just remember to keep to a routine, spend extra time together and reminisce often on the people who you have loved and lost. You and your child will make it through this. 14 Everyday Compassion Vol. 7 Issue 2
PETS IN MOURNING
KARISSA BENNETT, MSW, WRITES THAT HUMANS ARE NOT THE ONLY SPECIES THAT GRIEVES AT LOSS.
HOW ANIMALS GRIEVE Reprinted with permission from The Argus Institute of the Veterinary Teaching Hospital at Colorado State University, which provides free grief counseling related to pet loss. Many arguments have been made about whether animals have the emotional capacity to express grief. Research in evolutionary biology, cognitive biology and social neuroscience supports the view that many diverse animals have rich and deep emotional lives. People with companion animals or service animals will strongly argue that animals express numerous feelings such as fear, anger, shame, excitement and grief. Historically, wild animals have been known to express grief by letting out a yelp, wandering aimlessly and eventually reorganizing their pack. The human-animal bond is a
complex social bond, which is mutual, affectionate and thrives around a family system. Animals view you as a member of their pack. This bond provides safety and security for the family members and their pets and stabilizes everyone’s wellbeing. When a family member — human or animal — is lost, becomes ill, or dies, it affects the whole family. Effectively supporting the grief process in the surviving pack members allows the pack to move forward. Animals display grief in a manner similar to humans. Aspects of their personality may change for a period time.
Eating habits of surviving animals may change. They may:
Surviving animals may change their sleeping habits. They may:
Much like humans, animals may become despondent. They may:
• Display a loss of interest in eating.
• Sleep in unfamiliar places.
•D emonstrate searching behavior and look for the deceased.
• Have to adjust to a new eating schedule. If the eating habits change in the surviving animals, add some of their favorite foods to their diet, or perhaps entice them with special treats. It may be ideal to leave the deceased pet’s beds, water, and food bowls around for a few days after the death. Eating habits may vary because the surviving pet is waiting or looking for the animal that is no longer present. Trust that this is part of the process. Changes in appetite should be temporary. However, if there is dramatic weight loss, consult your veterinarian.
• Sleep where the deceased member used to sleep.
• Become clingy.
• Act lethargic.
• Nap more often.
• Show aggression.
Most animals sleep in pairs; if this routine is changed, they may sleep in different areas and become restless where they once slept peacefully. Things you can do to support the change in sleeping habits is to make time for more exercise, walk, hike and play more often.
Engage the surviving animals in activity. This may be a time of introducing a new leadership. Be sure to use positive reinforcements and gentleness to encourage these changing roles. Keep a regular schedule to best support the grief of the animals that express anxiety.
When there is an opportunity to go for a drive, be spontaneous. Creating new memories will help heal the grief and allow the pack to naturally reorganize.
Spend extra time together; sometimes allowing our pets to take care of us is just what they need as well. They will get through their grief in their own time in their own unique way. Everyday Compassion Vol. 7 Issue 2 15
MONICA WHITE, MSW, SOCIAL WORKER AND GRIEF GROUP FACILITATOR FOR COMPASSUS – CASA GRANDE, MARVELS AT THE POWER OF UNCONVENTIONAL GRIEF THERAPY.
Healing with horses Equine therapy helps to balance emotions
Equine therapy creates an environment to rebuild trust, do some soul-searching and balance emotions.
As a grief group facilitator, I strive to be creative within my sessions to help the bereaved understand their grief journey, using such tools as music, painting, cardmaking, game-playing and comedy to reach the bereaved. So when a counseling service in our area started providing equine therapy — including grief therapy — I immediately was interested. Equine therapy helps the grieving individual to rebuild trust, awaken opportunity, balance emotions with rhythm and hope by developing sensitivity, spirit and insight. Change occurs as the horse becomes the therapeutic emotional exchange. Working alongside a horse, in spite of our fears, creates confidence and provides wonderful insight when dealing with other intimidating and challenging situations in life. The horse was the magic piece that became the “change agent.” So Compassus collaborated with the counseling service to offer equine therapy workshops for members of its four Grief Journey Support Groups. The one-day Saturday workshops were provided free of charge to all participants by the Hospice Charitable Fund of Central Arizona. Equine therapy was an extraordinary thing for me, as the grief group facilitator, to watch, particularly because I know the
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background, the loss and the grief stories of each participant. And though they have shared their unique grief stories within my groups verbally and emotionally, many of the activities with the horses and equine specialist did not involve verbal expressions. Rather, it was a soulsearching, deeply personal experience between their internal thoughts and interactions with the horse. I was moved as the participants and the horses built rapport with one another and their comfort level and mutual respect grew. Many of the participants’ behaviors illustrated their current stage within the grief process. For example, those who struggled in the arena were also struggling to be honest with themselves about where they were in their own grief journey. I observed the horses nudging certain participants, pulling them along, or simply standing still together. I can’t explain how the horse “knew” anything about how that particular participant was handling their grief but it’s as if they did, and it was amazing to watch. Participants from each of the workshops acknowledged healing and growth when reflecting on their sessions. One woke up the next day with “calmness and clarity,” while another called it, “an eye-opener.” Equine therapy was a definite success for our grief support group members. The pairing of the bereaved and horses together started or rebooted the progress of healing without having it “feel” like therapy.
SOCIAL MEDIA AND GRIEF
JOSEPH S. WADAS, BEREAVEMENT COORDINATOR AND CHAPLAIN FOR COMPASSUS – SAVANNAH, CAUTIONS THAT THE INTERNET CAN’T REPLACE REAL HUMAN INTERACTION.
A BRAVE NEW WORLD Navigating grief in the digital world The digital world is having a profound impact on how we grieve. There is a paradox in the digital world. Social media connects people with each other like never before. It helps our natural desire to grieve together, to share memories and stories and to talk through our loss. However, at the same time, the digital world is a virtual one. This virtual experience does not take the place of real human interaction. Many people who share their grief online find themselves watching for reaction to the post. Does the post draw much attention in terms of likes, shares or comments? If not, does this mean that the deceased or bereaved are not popular? What exactly does it mean to “like” a death announcement? Feelings can easily get hurt when real-life friends fail to acknowledge the loss or comment online. This is definitely a brave new world. Some general guidelines can help navigate these treacherous waters:
Before posting anything online, make sure that all immediate family and important friends have been notified first. While social media can be an efficient tool to share information, it can be incredibly jarring for people close to the deceased to learn of the death via the internet. Creating a memorial page can also be a beneficial tool, connecting the bereaved to each other and even to the deceased. However, these pages can also become detrimental to the healing process. They may encourage the bereaved to hold on in an unhealthy way and never let go. This, then, becomes a festering wound, which is never allowed to heal.
Give some consideration to how much you are comfortable sharing publicly. Public posts can invite questions and comments. Before you post, consider your comfort level and how much you want to share. In offering condolences and support, be careful about word choice. Avoid cliché comments such as, “I know how you feel because I lost my mother, too.” The best response is one that is sincerely attentive to the needs of the bereaved. Remember that the virtual world is no substitute for the real world. If we are supporting the bereaved, we should personally reach out to them long after the announcement has moved off the newsfeed.
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UNEXPECTED BLESSINGS HEATHER SPICKARD, RN, WITH COMPASSUS – SPRINGFIELD, SHARES HER STORY OF A STIRRING COINCIDENCE. OR WAS IT?
A wink from Heaven
Heather Spickard was drawn to this painting of the Nebraska farming countryside for more reasons than she realized.
Four years ago, our oldest son became buddies with another little boy at his daycare and my husband and I quickly became close friends with his parents. The mom was from northeast Nebraska, like me, and we have that bond from each growing up in farming families. The first time we went over to their home I noticed a very large painting of the Nebraska farming countryside. I was drawn to it, as it felt very familiar to me. In time, it would mean more than I could have known …
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THE GENTLE SOUL
Michael Middleton was admitted to our service in July 2015 as a metastatic lung cancer patient. He was very reserved, quiet, calm and a very gentle soul. He hoped to regain his strength to be able to start treatment and always had the goal of beating cancer. He was always very optimistic, positive and didn’t talk much about death or dying in the first month or two. He loved his life — his career as an artist and art instructor, and his family, especially his wife Kathy, the
“love of his life,” as he frequently referred to her. As the weeks went by I could see him becoming weaker and weaker, eating less and less and losing weight. He didn’t seem to notice those things, and remained impressively positive and optimistic. I admired this about him and how he and his family were so close as they held strong day to day. One day when Kathy and I helped him onto a scale, it revealed a dramatic weight loss. At that moment, he realized he wouldn’t be getting better. As he and Kathy held hands and wept, he asked me if it was now time to focus on comfort instead of beating the cancer. His final weeks were spent with many visitors, family and friends and he remained, as always, gracious and thankful. Mike wasn’t able to say much at the end, but he gave me a wink one Friday after I told him to behave himself over the weekend. He passed on Tuesday, Sept. 29, 2015, with his family at his side in the home he built with the love of his life. It was a tough loss for me and other members of our team who admired his kind spirit.
most beloved piece of decoration in their home. I contacted Mike’s widow Kathy a week or so later and told her the story. I showed her a photo of the painting in their house and she said she knew which one it was before I even showed her. She remembered when Mike was working on it; it was one of his favorite paintings he did. It’s amazing how things can remind you of people who have gone. Every time I am in their home and see that painting, it’s like he is giving me a wink from Heaven. I know I’m doing what I’m supposed to because of blessings like this. The painting by late artist Michael Middleton was among his favorites, says his wife, Kathy.
It was now mid-October and we were again at our friends’ home having a play date with the kids. I was inside helping get food ready when I, as usual, gazed at the well-liked painting longer than a normal person would. This time, I noticed something I hadn’t before. In the corner, the was the artist signature read “Middleton.” When I calmly asked my friend where she got the painting, she said her husband had it painted as a gift for her. He had taken some of her family farming photos to a local artist about five years earlier and this was the product. I already was full of goosebumps and the hair on the back of my neck stood up when her husband confirmed what my gut already had figured out: My patient did, in fact, paint their painting, which they had said is the Everyday Compassion Vol. 7 Issue 2 19
PROVIDING TIPS AND INFORMATION TO BETTER ASSIST HOSPICE PATIENTS AND THEIR FAMILIES.
Dealing with business details after a loss Time, unfortunately, does not stop when we’re grieving, and business sometimes won’t wait. This checklist is a reminder of the business details that must be addressed after a loss.
Obtain 10-15 copies of death certificates. Certified death certificates will be needed for all benefits from insurance, trusts, contracts, annuities, Social Security, property transfers, mortgages, bank accounts, etc. They are less expensive and easier to obtain from the mortuary when funeral arrangements are made. Marriage and birth certificates may also be required to prove the survivor’s relationship to the deceased. Check if “Credit Life Insurance” was carried on any debts including mortgage. These accounts can be closed. If your loved one was receiving Social Security benefits, notify your local Social Security office of the death since these benefits must stop (find an office by calling 1-800-772-1213). Check if you are eligible for benefits for spouse and minor children. Contact the health insurance company or employer regarding ending coverage for your deceased loved one, while continuing coverage for any dependents if needed. Contact the insurance company about all life insurance policies. You will need to provide the policy number and a certified copy of the death certificate, and to fill out a claim form. If your loved one was listed as the beneficiary on any policy, arrange to have his/her name removed. If your loved one was working, contact his/her employer for information on pension plans, credit unions, and union death benefits. You will need a certified copy of the death certificate for each claim. Return his/her credit cards with a certified copy of the death certificate, or notify the credit card company if you, as the survivor, want to retain use of the card. Arrange to change stocks and bonds into your name. Check on safety deposit boxes/keys. Check on automotive insurance — benefits or unused premium.
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MIKE FRITZ, MAPC/MDIV, BEREAVEMENT COORDINATOR FOR COMPASSUS – CENTRAL TEXAS, IS WORKING TO GUIDE A PATIENT OUT OF A PARTICULARLY DIFFICULT GRIEF.
THE DEEPEST GRIEF Complicated cases require more than conventional counseling I used to think the stages of grief — denial, anger, bargaining, depression and acceptance — were about the loss of life, independence or freedom. Then, I met a patient that changed that viewpoint very quickly. Before I met her, I assumed her grief was “normal” grief over the “normal” things. Surprisingly, this was not the case with her. She had an uncommon, complicated grief that would require considerable help. Our patient fully believed that God had spoken directly to her and told her that she will not be in heaven. She understood God to tell her that she is not forgiven — not loved by Him any longer. This patient knew the Bible very well and would finish many of the quotes that chaplains and ministers use to help with these feelings. Indeed, she told me that she used these very Scriptures as she talked to God, and that he replied, “These Scriptures do not pertain to you.” How do you help someone who has not only lost her faith but thinks deep down in her mind and heart that God has forbidden her to enter into heaven? The idea of the hospice peaceful death no longer applied to her because her lifelong religious beliefs caused her great distress. During visits with her, we began to unravel where this thought of nonacceptance came from. She struggled at first telling the story because it brought tears and frustration. As time went on, the details became easier as
she finally began to tell her story. At first, no matter what Scripture I shared, she negated it. Then I talked about the Bible story of Jonah and the city of Nineveh and God’s forgiveness for them. She began to ponder and did not have an answer for that one. But, the biggest turning point was when we talked about how Jesus was tempted in the garden and who tempted Him. We talked about how her set of beliefs concludes that Satan knows and understands the Scripture as well and uses it to cast doubt to God’s followers. She began to look at things from a different standpoint and began to be more relaxed and at ease. So you see, grief consists of much more than the five stages. It can be a loss of faith, loss of direction or the loss of self. In these complicated cases, it takes more than conventional counseling. Rather, it takes time, building trust and creating relationships that begin to break down the barriers. I would love to say that this patient is now completely at peace, but I cannot; she had lived many years thinking she was not welcomed in heaven. But I think we have moved her grief into doubt about her former beliefs, and that is a big step.
Complicated grief requires more than conventional counseling.
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JENNIFER DOYLE, BEREAVEMENT COORDINATOR FOR COMPASSUS – METAIRIE, RECOUNTS HOW COMPASSUS HELPED A FAMILY THROUGH ILLNESS, DEATH AND BEYOND.
Helping a grieving son
Compassion and caring helped Carrie Brown and her sons, Billy, left, and Sidney, right, with her death.
Carrie Brown’s son, Sidney, was frightened. His mother was dying of lung cancer and her physician had told him that all hospice does is, “send you home with medication and you die.” As his mother’s primary caregiver, he didn’t know what hospice was or what to expect. Then he met with Compassus. From the moment he met our team, including Ms. Carrie’s nurse, Lani Fonseca, Sidney was healed by how much love he received from everyone. His mother had been sick for several years, and the time had finally come when he simply wanted to focus on comfort care, rather than repeatedly going back and forth to the hospital for treatment that was not working. Sidney took a leave of absence from his job to take care of his mom; his mother was his everything. I started pre-bereavement with him and Ms. Carrie as soon as she came on hospice. I would visit often and we would talk about death and dying and just life in general, she would tell me all about her life and her children. Like everyone else, Sidney and Ms. Carrie had good days and bad days. Sometimes she would tell me she was afraid to die; other times she worried about her sons’ grief and asked me to watch over Sidney. Ms. Carrie was with us six months and was 60 when she passed away. To this day, I still call Sidney on his mother’s birthday and death anniversary. Through the
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hospice bereavement program, I sent him monthly Grief Mail, which he says helped him tremendously. Families particularly appreciate when we mail them a card commemorating the one-year anniversary of their loved one’s death. They always call and say, “Wow, I can’t believe you still remember and thought of us after one year.” Ms. Carrie is buried near my Paw Paw’s grave, so when Sidney makes his frequent visits to his mom, he will call me and say that he passed by my Paw Paw’s grave. I also visit his mother’s grave when I visit my Paw Paw’s grave. He still always says he wouldn’t know what to do if his mother did not have hospice and all the care that they received. Sidney and numerous other families served by Compassus realize that hospice truly makes a difference in people’s lives.
NO GUILT ALLOWED
GARRY YEAGER, M.DIV, D.MIN., BEREAVEMENT COORDINATOR FOR COMPASSUS – FLINT, USES AN INTRIGUING ANALOGY IN UNDERSTANDING INDIVIDUAL GRIEVING.
A Bucket of Grief After a loved one’s death, grieving family members frequently experience guilt about their feelings; they express love for the lost family member but worry that they aren’t grieving enough. They feel regret for handling it too well and wonder if something is wrong with them. On a few occasions, comments have been made by others that a particular family member does not seem to be grieving. “I always thought they had a good marriage,” someone will say, as if suggesting their love was not what it appeared to be on the surface. My answer to that involves a milk bucket and an empty soup can. Grief comes to us in a full bucket. If we let grief simply sit in the bucket, we will become physically sick. So we must begin to remove it from the bucket, a little at a time, with the soup can. This is done by experiencing and beginning to move through grief. But what most do not understand is that the bucket of grief is not handed to us at the time of death, but rather when we first learn of the possibility of a loved one’s impending death. It is then that we start to grieve or start dipping — experiencing — grief out of the bucket. During those pre-death days, months or years, we actually grieve with our terminally ill loved one, emptying grief out of the bucket together. So when death does come, the bucket is far from full. Sometimes
it is down to the bottom of the bucket; therefore, the grief at death does not hit us as hard as it might have with no preparation time. Often a sense of relief prevails that the patient’s struggles are over. That is not an expression of no love. Far from it. It is deep, unselfish love. Because together, in love, they dayby-day dipped most of the grief from the bucket. Now it is time to rest and move on. The soup can will never remove all of the grief, because it cannot reach into the crevice around the bottom edge of the bucket. A little grief will remain in the bucket for years — perhaps forever — but it will not be the overwhelming kind. Rather, it will be the gentle kind of grief that gives beauty to the loving memories that remain.
Hospice can help patients and loved ones empty their buckets of grief.
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THE DREAM TEAM TOM BARTHEL, RN, CHPN, DIRECTOR OF CLINICAL SERVICES FOR COMPASSUS – LANSING, RECOUNTS HOW HIS COLLEAGUES MADE A PATIENT’S WISHES COME TRUE.
ONE UNFORGETTABLE WEEKEND Compassus – Lansing team grants two final wishes just in time for Independence Day.
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You have one week to live. What do you do? Jerry Ripley took one last ride on a Harley-Davidson motorcycle past the state capitol on the Fourth of July, and renewed his wedding vows to the love of his life. When Jerry first received his stomach cancer diagnosis, his own directives were clear — live life to the fullest, just as he always had. Love with abandon and ride on. The battle was a long and hard one. Suzy Howell, RN Case Manager, began supporting the family long before his hospice admission with phone calls and visits explaining the hospice philosophy, carefully guiding the family through the process of accepting Jerry’s prognosis. Suzy helped them make those hard decisions every step of the way, even before Jerry entered hospice care. “I knew the daughter; she was an aide at a facility where I worked,” Suzy says. “Over the course of several months, as things progressed, I followed them and visited with them — even in the ICU. I went up to the hospital and had a heart-to-heart about coming home on hospice, and we made it happen.” That’s when the rest of the team stepped in to make Jerry’s final days come to life again. Our social worker, Tenille Shin, helped identify his final “must-do” list. A longtime Harley Davidson enthusiast, Jerry wanted to take one last ride on the back of a friend’s bike in the Fourth of July Parade near the Capitol building. The first wish took some doing because of Jerry’s weakness and pain, which we worked to get under control. With our support, and a friend’s two-seater, Independence Day was a triumph.
“It was great,” says Kristin Thomas, Jerry’s daughter. “He wanted one last ride. His face just lit right up. He couldn’t thank anybody enough. We held up the parade in front of the capitol building and all of his biker friends got off their bikes and saluted him. I knew that was going to be his last ride.” While Jerry was enjoying his ride, his children, a social worker and chaplain were hard at work on his next wish, which was meant to be a surprise. Jerry had talked about renewing his vows to his wife, Debra, for years but hadn’t managed to find a “preacher,” as they didn’t belong to a church. “They pulled me aside and asked me if and when our chaplain might be available,” Tenille says. “I told her that our chaplain is always available oncall, even on weekends, and they were so thrilled.” Without any reason to wait, our chaplain, Rich Mitterling, sprang into action and arranged a Sunday, July 5, ceremony at the couple’s home. As his blushing bride rounded the corner to meet her surprised, adoring groom, the entire family broke into tears. “One son brought Mom in from the kitchen and one daughter started
playing the wedding march on her iPhone,” Mitterling says. “He heard the wedding march and stopped talking to me. He knew what was happening. As she came around the corner with her bouquet, he started crying and said, ‘I’ve wanted to do this a long time.’ She sat on the edge of his chair with her flowers in her hand.” The vows were traditional and simple when the time came for the rings, Jerry asked a daughter to go fetch his from the bedroom. He had lost so much weight from the cancer that it had fallen off long ago. The whole family applauded after the kiss. They sat side-by-side in the recliner and talked about all of their travels, adventures and motorcycle trips. Later that week, his daughter Kristin checked in with her dad to make sure there weren’t any other wishes that needed fulfilling. “When we asked him the following Tuesday, ‘Dad, was there anything else we needed to do? Anything else he wanted?’ He just shook his head and smiled and said ‘no.’ He was so happy,” she says. “I couldn’t have asked for a better weekend for him.” Jerry Lynn Ripley passed peacefully Thursday, July 9, surrounded by family.
Jerry Ripley lived life to the fullest to the very end, when he took one last ride on a Harley-Davidson.
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PHYSICIAN SPOTLIGHT SHINING A LIGHT ON SOME OF THE FINEST DOCTORS OF COMPASSUS.
A personal tragedy motivated Paul E. Tatum III, MD, to improve end-of-life experiences for patients When Dr. Paul Tatum’s father was dying several years ago from an extraordinarily rare disease that caused, among other things, weakness and severe shortness of breath, the hospital team did not have the skills to alleviate his suffering. Believing they couldn’t “give him morphine because it might kill him,” the hospital was powerless to ease his suffering, yet eager to provide intensive care. “It’s sad the team was afraid of killing him with the use of morphine when that is the one intervention from which he would have most benefited,” Dr. Tatum says. Dr. Tatum, who had training in primary care and geriatrics, along with some experience in hospice, resolved to provide a better end-oflife experience for patients. “That’s when I decided that palliative care was what I really wanted to do,” he says. And, indeed, he has. Dr. Tatum, medical director for the Compassus program serving the JeffCo area in Mid-Missouri and Program Director of the Hospice and Palliative Medicine Fellowship at the University of Missouri, recently won the 2016 Hastings Center CunniffDixon Mid-Career Physician Award. The award honors physicians who have shown exemplary care for their patients and who have enhanced end-of-life care as a basic part of the doctor-patient relationship. He is also a member of the Compassus Medical Directors Advisory Council. 26 Everyday Compassion Vol. 7 Issue 2
Dr. Tatum, MD, MSPH, CMD, FAAHPM, has held various medical and teaching positions, and developed national curriculum with the AAHPM and CAFP to redefine palliative medicine for primary care physicians. But there’s still a lot of work to be done, he says. “The region where you die determines what choices you have,” he explains. “If it’s a region where there are lots of ICU beds, then you’ll have an ICU end of life. If it’s a region where palliative care is the norm, then you’ll have that, along with earlier access to hospice.” Unfortunately, the idea of palliative care is relatively new enough that most physicians don’t know what it is, Dr. Tatum says. “The tragedy of that is, if you tell patients and families what palliative care is, they say they want it,” he says. “It’s exactly what patients need when there is serious illness.” And effective palliative care results in a better hospice experience for patients and their families, he says. “If we create a culture of early access to palliative care for serious illness, then (the situation of) people being in hospice for only three to five days will end,” he says. Entering hospice earlier will provide hospice care teams more time to build trust and relationships with patients and their families, Dr. Tatum says, so that the end-of-life experience is peaceful and not what his family experienced with his father’s death.
THE FINAL STAGES DOUG OVERALL, CHAPLAIN & BEREAVEMENT COORDINATOR FOR COMPASSUS – PRESCOTT VALLEY, SHOWS WHY IT’S SO IMPORTANT TO REALLY LISTEN TO PATIENTS.
THE LAST DESIRES OF THE HEART Inquiring about final wishes may be one of the most important and caring things we can do to ensure that patients’ wishes will be honored Sally’s admission to an inpatient hospice unit threatened to botch a previously scheduled wedding shower for her granddaughter. Sally felt she would die before the actual wedding took place, so she had looked forward to hosting her granddaughter’s wedding shower in her home. Seeing that Sally’s condition was worsening, the hospice staff offered their lounge and waiting area for the wedding shower so that Sally could attend. The wedding shower was moved up a few weeks and held down the hall from Sally’s room. With assistance of some hospice aides, Sally was able to attend the first 30 to 45 minutes of the wedding shower in her wheelchair before tiring and returning to her room to rest. Less than 15 minutes later, Sally had crossed over into eternity. The desires of her heart had been granted. It’s often difficult to think about dying, let alone talk about it. When someone we love or are providing care for is dying, it’s hard to know how to help — what to do, what to say. Yet, if we take the time to truly listen to what loved ones, friends and patients are expressing, they will often supply us with, “the desires of their heart.” It also helps to simply ask the patient, “What are your wishes, your desires? Who do you want to see?
What would you like to tell your loved ones? Is there a place you want to go? What projects or tasks do you want to complete?” By keeping an open mind and listening carefully to our patients as they journey through their final stages of life, we can begin to understand what they are communicating, through conversation, brief suggestions or wishes, or symbolism (dreams, seeing deceased loved ones, wanting to pack some luggage or take a trip). Most of the time these final wishes provide insight to what dying persons need for a peaceful death. As we listen, we can learn how family members, friends and caregivers may be used as a channel of blessing to those seeking to prepare for their departure. Sometimes patients wish to express the most simple and meaningful expressions of everyday life, such as, “I love you,” “I’m sorry,” “I forgive you” or “You’re welcome.” Inquiring about final wishes may be one of the most important and caring things we can do. For many people, the end of life is a call to complete unfinished business. It offers a time and opportunity to reflect, remember and celebrate relationships and life-accomplishments and choose their legacy.
Final wishes usually provide insight to what a patient needs for a peaceful death.
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HONORING A LEGACY
COBY DERKSEN, DIRECTOR OF SALES, AND CINDY HOFFMAN, RN, BOTH OF COMPASSUS – DENVER, COLLABORATED TO SHOW HOW CINDY IS WORKING THROUGH HER GRIEF.
Turning Grief into
INSPIRATION Cindy Hoffman and her father, Bob Carney, have always been close — it is a special bond between a father and daughter, one that has been the source of great joy for them both. “My father inspired me to become a hospice nurse because losing him was the one thing I was so afraid I could not handle,” Cindy recalls. They talked about Bob’s wishes and the things he wanted, as well as the things he did not want. “I was fearful of being alone and needing to make decisions on his behalf so I wanted to make sure I was honoring exactly what he would want,” she says. Cindy and her father had a strong family tradition around football and are huge Denver Broncos fans, so this year’s Super Bowl 50 was especially exciting. Carney, a season ticket holder since 1967, was selected to receive Super Bowl tickets through the lottery and he and Cindy made their plans to attend the big game. Upon arrival in San Francisco, however, Bob collapsed and was rushed to the hospital. Cindy’s fears were now a reality and she had to step outside of herself and make tough decisions that reflected her father’s wishes — to do what could be done to preserve the life he loved. Unfortunately, despite the best efforts of his care team, the point came when no further intervention was possible. Bob slipped away while the song from their father-daughter 28 Everyday Compassion Vol. 7 Issue 2
dance at Cindy’s wedding played in the background. In the hours, days and weeks since her father’s passing, Cindy faced immense moments of grief, anger and sadness, yet she emerged with inspiration. She looked for ways to honor her father’s legacy through her
Cindy Hoffman and her father, Bob Carney, shared a love for the Denver Broncos NFL team.
The Denver Broncos recognized Bob’s team loyalty by sending their Super Bowl Lombardi trophy to his memorial service.
own life. She began the very next day by attending Super Bowl 50 in her father’s memory and watching their Broncos win the championship. She knew it would have made him proud — of both her and his Broncos. Cindy’s sudden, tragic loss of her father the day before Super Bowl 50 made national news and the Broncos organization noticed. The week after the game, the Super Bowl champions sent their championship Lombardi trophy to Bob’s memorial service with former cornerback Billy Thompson, a player Carney had watched for 13 years. Throughout everything, Cindy focused on paying tribute to her father’s life, devoting energy to celebrating the things that were important to him, creating a fingerprint memorial tree and pulling strength from those surrounding her and her family in support. Cindy continues to craft keepsakes using pieces of Bob’s favorite clothes, handwritten notes and other items that have sentimental value to help with the grief and as a way to preserve his memory. “There are hard days, there are tears and even anger, as I try to transform these emotions into something good because I know that is what he would want me to do,” she says. It is as if Cindy has put on his glasses and is seeing the world through “Bob-colored lenses” and following his generous and optimistic spirit. Carney always carried around
M&M candies to give his wife in case she ever needed a pick-me-up. Cindy keeps this tradition alive by always having these sweet treats for her now. “It is a way that he continues to live through me and for me to continue his legacy when I hand them to someone who needs a pick-me-up,” she says. “I feel connected to him in this act and that is important.” Cindy often will light a candle and watch the flame flicker because those moments evoke the feeling of her father’s presence. And then she asks herself: “Who can I help? How can my story bring inspiration and strength to someone else in need?”
This fingerprint tree, with the prints of family and friends, has been part of Cindy’s healing.
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SAFETY IN NUMBERS
JENNY FILUSH-GLAZE, M.ED., LPC, BEREAVEMENT COORDINATOR AND GRIEF SUPPORT SPECIALIST WITH COMPASSUS – AUBURN, AND DIRECTOR/FOUNDER OF CAMP GOOD GRIEF, SHOWS HOW GRIEF SUPPORT GROUPS CAN HELP ENCOURAGE HEALING.
healing efforts of group support goes a long way in our individual grief journeys. No one volunteers to become a member of a grief group. Indeed, we resent that our journey has led us to this time and space in our lives. However, joining a support group can be one of the biggest advantages you may have toward moving forward in your life simply because you have gained the support of others who walk a similar path. HELPING EACH OTHER
THE LONELY HEARTS CLUB
Joining a grief support group is not a sign of weakness, but a place to receive a strong show of support One by one they filed into the room, taking note of the other participants. Those acquainted with each other nodded their hellos and then took their seats, while newcomers appeared to waver at the front door, uncertain of how to proceed. Members who remembered what it was like to walk in for the first time acted as mentors and created a calming comfort zone, even though they too were here for their own healing. Seeing firsthand the power of group healing is a wonderful experience to behold. It is why the 30 Everyday Compassion Vol. 7 Issue 2
People tend to think that speaking to a counselor means they are unable to cope. Attending a support group demonstrates that they are unable to handle things on their own. Or so they think. Honestly, many come to group the first time scared out of their minds, but most leave feeling uplifted and supported. Bonds are made, new relationships are established and almost everyone feels like they belong. We would wish to never become a member of a grief support group, but while we are on a grief path, why not take advantage of every opportunity to help us further our journey in a positive way? Nothing provides more validation than to hear others say, “I thought I was the only one,” or to see heads nod in acceptance of something just shared because they have been there as well. Support group is filled with lonely hearts, but it is a club whose entrance fee is well worth paying, especially since the price of admission is the sacrifice that has brought you all together.
PATH TO HEALING DOUG OVERALL, CHAPLAIN/BEREAVEMENT COORDINATOR FOR COMPASSUS – PRESCOTT VALLEY, OFFERS WAYS FOR CAREGIVERS TO GRIEVE THEIR LOST ROLE.
Empty Nest Syndrome Our Compassus employees experienced a rare but fascinating display by nature this summer from an unlikely source: hummingbirds. We watched daily as they crafted the nest, fed the babies and taught them to fly, so there was a profound sense of sadness when the nest was empty. It occurred to me how much this brief snapshot into nature’s birthing and release process paralleled many caregivers as they accompany loved ones along their end-of-life journeys. Empty nest syndrome isn’t a clinical diagnosis; it is a phenomenon in which parents may experience feelings of sadness and loss when the last child leaves home. Research suggest that parents struggling with empty nest syndrome experience a profound sense of loss that might make them vulnerable to depression, alcoholism, marital discord and identity crisis. Empty nest syndrome can also affect caregivers when a loved one’s end-of-life journey is completed. Caregivers often report feelings of loneliness, depression or loss of purpose. When a family member dies, the world changes for the caregivers left. They may experience a sense of feeling useless. Days and nights once filled with numerous responsibilities are now void of any purpose or direction. As one bereaved family member recently expressed, “Their (death) not only marked an indelible
change in my life and family’s life, it also marked the end of a role/ purpose.” As caregivers grieve the death of those they compassionately served, these reminders can help to address “empty nest” symptoms:
When caregivers suffer the loss of a loved one, they may also lose a sense of purpose
Make self-care a priority: Maybe the most important thing a caregiver can do is allow themselves to experience all the painful emotions associated with their loss. Acknowledge and mourn your loss: Recognize there may be a grieving process. Crying and tears are normal reactions to a significant loss. Consider various ways to mourn your loss through rituals, funeral services or connecting to cherished objects, such as photos, personal effects, jewelry or memorabilia of your loved one. Seek support: It helps to talk to someone about your loss and emotions. Consider caregiver or bereavement support groups.
Our baby hummingbirds aren’t in their nest anymore. From time to time it seems that one will reappear at the window to say, “Hello, we’re doing fine … go serve others!”
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MEANINGFUL MEMORIAL SERVICES
MIKE FRITZ, MAPC/MDIV/ PHD. IFCC, A BEREAVEMENT COORDINATOR FOR COMPASSUS — CENTRAL TEXAS, INTRODUCED SPECIAL WAYS TO MAKE ANNUAL MEMORIAL SERVICES EVEN MORE MEANINGFUL FOR HIS GRIEVING FAMILIES.
The Fabric of Life Our annual memorial service for bereaved families is a time of reflection, remembrance, and encouragement. This year, we added two things that went over very well. We selected a “spring” theme, which, because it was the first week of spring, indicated new life, new beginnings, and all the normal things we associate with spring. However, I added a new twist to the word “spring” by making an
acronym out of the word. SPRING stood for Sharing Personal Remembrance of Individuals Now Glorified, which captures feeling refreshed and renewed. Spring is now something that one can look at and begin to smile as they remember their loved ones are now glorified. I also shared a poem I wrote that describes how people affect others in our lives:
THE FABRIC OF LIFE
In the fabric of life There comes along a person Who seems to be able to work magic. These people are those who can be called “The Thread.” They connect the various fabrics of family, friends, and all those they meet. The Thread is so much the binding of material That it is hard to imagine life without them. But just like in a quilt that is put together, So are the lives of those who this thread touched. Lives are different now that The Thread is gone, but The Thread binds the people together to make a beautiful masterpiece. This masterpiece The Thread created is called Family.
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POETRY AS THERAPY
DENNIS ZIMMERMAN, M.DIV., M.A., D. MIN., A CHAPLAIN FOR COMPASSUS – WESTLAKE, IS WORKING THROUGH HIS GRIEF BY WRITING POETRY. “I WILL WARN YOU IT IS A BIT ‘RAW’ AS GRIEF, IN MY EXPERIENCE, IS RAW,” HE WRITES.
Gone! Numbness and void. Blessed Oblivion! But, maybe it is not so, didn’t happen, was just a nightmare dream. But then, … gone. Searing, white-hot pain tears breath from lungs, sight from eyes, strength from knees. But all that is the easy part. No one told me about the bleak, barren LONELINESS. How “future” dissolves in a boiling acid bath of “nope…, not ever gonna’ happen.” Gone. Not misplaced, a little late, around here someplace, will show up soon. Just, … gone, stolen, taken from me, destroyed, obliterated, never to be seen again. Never again. And the chasm left behind is un-fill-able, un-fathom-able, a permanent, ugly scar that will never be covered up, hidden, erased from memory, denied. For “We” is gone. Life and love, peace and joy will bring renewal and courage and hope somewhere, someday – perhaps everywhere, everyday — but not there, not in that broken, gaping, … gone. For the scar remains. A permanent reminder. A gap. The price I pay for a “we” that will never quite heal, can never be fixed, or repaired, or replaced, or go away. For “we” is … gone. Knees will find strength. Eyes will find sight. Lungs will fill with air. White-hot will dull to yellow-ache. Nightmare will lose its terror. Numbness will fade. Void will fill. But gone remains … Gone.
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