Hospice News S PRING 2 021
The Art of Losing The importance of the hospice team during a patient’s final moments
It’s OK to be OK The many ways we respond to loss
Donna Bumann Hospice Social Worker
It’s OK to be OK
You might have read the title “It’s OK to Be OK” and immediately thought “Well surely she isn’t talking to me because I am definitely NOT OK!” And yet, this article is for you. It is also for the small and often overlooked group of grievers who find themselves doing fairly well with their grief. It is common for most grievers to have good days and find themselves feeling OK, good even. But for a few grievers, they find themselves feeling OK most of the time. One of the dimensions of our comprehensive hospice program is the bereavement services available following the death of a loved one. Brookings Health System offers bereavement visits, follow up phone calls, a monthly newsletter, and grief groups. In the weeks following the death of a loved one, the family will receive a call to see how they are doing. Answers vary as one would expect, especially knowing that no two people grieve the same. MOST people talk about the good days and bad days. They talk about learning to do the things they didn’t realize their loved one did. They talk about crying in unexpected places at the worst times. They talk about getting back into a routine and finding ways to keep busy. That’s what MOST people say. And then there are the few who say “I’m good.” They are good except for the part where they wonder if there is something wrong with them.
Why don’t they cry more? Why do they find themselves enjoying life already? Why isn’t their grief like what the books say? After all, most information about grief talks about how life has been turned upside down and how to cope with feeling lost. Because those books are written for MOST people. There’s not much to be found that gives reassurance that it is OK to be OK with your grief. In fact, a Google search of “it’s OK to be OK with your grief” yielded exactly ONE kind of, sort of relevant article. There were far more articles and videos relating to “it’s OK to not be OK.” So let’s take some time to discuss being OK with grief. As with all aspects of grief, there’s no mathematical formula to explain if A then B, no flow chart to lay out the path ahead, no diagram to let you know when you have reached the end. But here are a couple of things that seem common among those who report to be doing well. And just because the following scenarios resemble your experience, it does not mean there is something wrong with you because you don’t identify yourself as “OK.” Anticipatory grief is much like it sounds. It is the grief you experience prior to the death of your loved one. It is often experienced by friends and family as well as the person dying. Anticipatory grief includes the full range of emotions one would expect in grief after the death of a loved one: anger, sadness, denial, loneliness and depression.
2 brookingshealth.org
The presence of anticipatory grief in no way predicts to what degree you will experience grief after the death of a loved one.
Feeling OK with your grief has its own set of problems.
Where anticipatory grief does seem to have more of a predictable influence on grief outcome is with diseases such as Alzheimer’s and Dementia. These diseases typically last for years as friends and family watch the changes in their loved ones. These changes affect the personalities and memories of their loved ones and eventually alter physical abilities. As loved ones slowly slip away from reality, friends and family grieve the loss of the person they knew. By the time their loved one dies, their friends and family had already said goodbye to the person they knew years ago. A second commonality found is the belief that their loved one is in a better place. While hospice does everything possible to make sure people are comfortable and have the best possible quality of life, there are times there is not much quality left, especially when loved ones are no longer able to communicate or engage with the world around them. Friends and family often say, “Yes, I miss him/her but I could never wish them back.”
There can be shame for the griever. After all, how do you admit to others that you aren’t experiencing the typical emotions associated with grief? How do you answer the dreaded “How are you?” question with “I’m good” and actually mean it without worrying about what others will think? Whether you identify as someone who is OK with your grief or someone who is struggling with your grief, all grievers talk about feeling guilty when not feeling bad. People often feel guilty when they find themselves having a good time. The smile disappears as you realize you weren’t feeling bad and guilt takes over where happiness briefly existed. Feeling OK, whether briefly or frequently, has absolutely nothing to do with how much you loved your departed love one. Feeling OK in no way reflects the strength or quality of your relationship. It only means that even in grief, there are moments to be enjoyed. The challenge for you is to give yourself permission to do so.
3 spring 2021
Gregg TeBeest Chaplain
The Art of Losing
The dying process and death of a loved one is probably the most difficult challenge we face in this life. Feelings that often accompany this process—fear, sadness, doubt, insecurity, or even ambivalence among others were undoubtedly compounded the past year by the coronavirus pandemic. Patients and residents, health care providers, hospital and nursing home administrators and staff nationwide struggled with restrictions placed upon families due to fear of disease transmission. In some cases infected loved ones including hospice patients died alone. In many cases though hospital, hospice, and facility staff became the patient’s surrogate family and provided tireless and loving support at end-of-life. They are owed a debt of gratitude.
In the December issue of the Journal of the American Medical Association (JAMA), two physicians presented three poems that they say demonstrate “The Art of Losing” during the COVID-19 pandemic. All three are excellent and I would recommend following their references below. But I have chosen one of the poems that I believe applies more appropriately to hospice patients and their families. I would encourage several readings of this short poem with time given for reflection on the poignancy of the dying experience as presented by the author. Dr. Raphael Campo also provides a brief interpretation and application below.
Hospital in Oregon by Marilyn Chin with commentary by Raphael Campo Shhh, my grandmother is sleeping, They doped her up with morphine for her last hours. Her eyes are black and vacant like a deer’s. She says she hears my grandfather calling. A deerfly enters through a tear in the screen, Must’ve escaped from those there sickly Douglas firs. Flits from ankle to elbow, then lands on her ear. Together, they listen to the ancient valley.
“Shhh,” it begins urgently, hushing us for a moment, as if silencing the barrage of alarms and clicks and beeps of inpatient health care settings. Then the speaker’s grandmother, seemingly unreachable near death, is visited in a random second by a fly in prelude to her departure. Merest of organisms beneath our sophisticated systems of care, the fly comes in closer and becomes more intimate than the dying patient’s absent health care team, or even the granddaughter-poet. Its breach of distance between clinical reality and patient experience reminds us of several things: first, that care can happen simply by being with patients even when, as in the case of COVID-19, cure eludes us. Its implied buzzing evokes the sounds of other languages, times, histories, and cultures that clinicians must strain to hear if they notice them at all. Finally, the fly’s transgression into the antiseptic space of the hospital room is a reminder of the realities of nature and death, the conflict between the hygienic orderly world of health care spaces, enforced now by unending handwashing and rigid PPE protocols, and the messiness of grieving families and of near-death. Physicians especially struggle to overcome barriers to communication caused not just by cultural difference, but by the technologies and technological thinking we deploy. The poem animates what many health care workers may feel these days imposing strict isolation on coronavirus patients as ultimately they suffer and die alone, and all that these
patients may see and hear in their minds beyond the sterility, in contrast with the clamor of the hospital. If you’re like me, you have utter disdain for the common housefly. After all, what is it good for? It just sort of hangs around, spreading its influence as it imposes on your day. So it’s not surprising that our natural reaction is to curse the fly and shoo it away. Who’s got time, after all, for such an unhygienic, unsavory guest? But the poem illustrates that the fly took on an important role that no one else could manage given the circumstances. This may sound strange but I wonder if there is a peculiar connection between the common housefly and hospice services. Consider with me for a moment. Like the pesky fly it may seem at times that members of the hospice team just sort of hang around and impose on your day. As you struggle to find delicate balance between your duties as caregiver, working spouse, son or daughter, you may feel that you really don’t have the time or patience for such unsavory guests. After all what are they really good for? As stated, however, we must consider that even the lowly housefly serves a very important purpose. When everyone else, as Dr. Campo reflects, is distracted with the demands of life…and death, the fly patiently waits, (some call it hanging around); and, the fly witnesses (some call it not doing much) those poignant moments, those sacred end-of-life moments that for all the chaos are all too oft overlooked. In so doing the
humble fly serves to validate the sacredness of every precious life. What an amazing gift! Though at times we feel we must search diligently for it, we would do well to recognize that even in those very inconvenient moments of life and death, the hospice team serves its purpose as well. In those poignant, sacred end-of-life moments, the hospice team like the lowly housefly waits and witnesses, and in so doing validates the sacredness of life itself. Again, what a precious gift! What should we say of the housefly then? Wouldn’t it seem in light of the sacredness of their task that some praise would be warranted? I mean after all, they are giving witness to the mysteries of life and death. Or is praising something so contemptable just too unseemly? If praising seems inappropriate, may we at least acknowledge them then? At the risk of my own credibility I would like to tip my hat to the common housefly. In fact, I would like to acknowledge them with the sanctity of this short and humble prayer. To all the houseflies of the world, may God bless you! God bless the houseflies of this world and embolden you in the sacredness of your task! Amen. December 11, 2020. doi:10.1001/jama.2020.24699 “Hospital in Oregon” from A Portrait of the Self as Nation: New and Selected Poems copyright 2018 by Marilyn Chin. Used with permission of W.W. Norton & Co. Rafael Campo, MA, MD, Division of General Internal Medicine, Beth Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA 02215 (rcampo@bidmc.harvard.edu).
5 spring 2021
understanding grief S I X W E E K E D U C AT I O N A L S E R I E S B E G I N N I N G J U N E 3 RD
DATES Every Thursday June 3 – July 15 (Excluding June 17) TIMES 2–3:30 p.m. or 6:30–8 p.m. PRESENTER Donna Bumann, MSW, CSW WHERE Brookings Health System Conference Room A PRE-REGISTER Visit brookingshealth.org/grief or call (605) 696-8090
The experience of grief is unique to each individual. There are, however, emotional and physical symptoms, thoughts and behaviors that tend to be present among many people who grieve. Understanding what these are and learning ways to cope with them can be helpful when one is grieving. This program not only focuses on understanding and coping but also provides a source of support for class members. You are welcome to attend all or some of the classes. TOPICS: Symptoms/Process of Grief, Coping Strategies, Caring for One’s Self, and The Continuing Bond
COST: FREE
Foundation Support
Brookings Health System Foundation was formed to help build and support Brookings Health System. Our mission:
Inspiring people to support Brookings Health System through philanthropy, recognizing the vital role of health care in sustaining quality of life in our community. Financial gifts made to the Hospice Fund, through Brookings Health System Foundation, help support ongoing hospice programs, including equipment needs, continuing education for staff and music therapy sessions for hospice patients. If you would like to give to the Hospice Fund or learn about other ways to support our Foundation, please visit brookingshealth.org/Foundation or contact Foundation Director Sara Schneider at (605) 696-8855 or foundation@brookingshealth.org.
Help Enhance the Life of Someone at the End-of-Life
Be a Hospice Volunteer Clients who are in hospice want to enjoy life like anyone else. They appreciate visits, playing cards, being read to, hearing about a basketball game or sitting outside to watch birds at the feeder.
While a Hospice Volunteer visits, a care giver can take a break, run errands or go to an appointment. Become part of the Hospice Team. Become a Brookings Health System Hospice Volunteer. Training is provided.
To find out more, contact Donna Bumann, MSW, Hospice Social Worker, (605) 696-8089.
7 spring 2021
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Hospice News is published by Brookings Health System. This publication in no way seeks to serve as substitute for professional medical care. Consult your physician before undertaking any form of medical treatment or adopting any exercise program or dietary guidelines.
We Extend Sympathy to the families and friends of the following patients who have passed away January through March 2021:
Audrey Anderson
Dennis Jorenby
Leone Mix
Gary Sackmann
Donald Anderson
Virginia Koenig
Dennis Nagel
Benjamin Sahr
Donald Auger
Sally Kooiker
Richard Nielsen
Leland Schlimmer
Sharon Busick
Kathleen Kopecky
Joanne Olson
Luella Schlobohm
Lois Hope
Michael Kuck
Eugene Roehrich
Allen Schroeder
It was an honor for us to get to know them and to assist in their care.