A Publication of Hospice Compassus | Vol. 5 Issue 1
Living Hope Hospice Compassus Colleagues go to South Africa and bring home a new view of the world
Camp Projects Help Kids Grieve Unique activities for children who are bereaved
Honor Flight Veterans travel to DC to visit numerous war memorials as a tribute to their service
Finding Hope After Loss
Everyone experiences grief differently. While there are some universal similarities, each person is unique.
Making a Big Difference in Small Ways Foundation offers funds and grants to patients and families receiving hospice care
Faith Lost and Found Anew How an adolescent coped with the loss of a parent
Everyday Compassion Alleviating pain and suffering is the fundamental mission of hospice. In our quest to fulfill this mission, we are blessed with two phenomenal resources. The first is the collection of miracle pharmaceutical agents that modern science has crafted to help our doctors and nurses arrest the physical pain caused by the march of unrelenting disease. The second is the cadre of professional care workers and volunteers whose deliberate and compassionate interactions with our patients and their loved ones serve to assuage the intense emotional pain caused by the heavy sorrow of personal loss. While we embrace and celebrate the dramatic accomplishments of medicines and procedures, individuals often ignore the importance of grief and shun the discipline of grieving. Maybe it seems these hurts are too personal, that they are beyond any ability to alter, or that they will subside best when simply left alone. This course is chosen, however, at our personal and collective peril. Both physical and psychic pain are real and intense. Both require intentional ministrations. And both demand our active personal and professional attentions. As uncomfortable as it might be, sharing our experiences and talking about grief and grieving â€Ś more often and in a greater number of contexts â€Ś represent the therapeutic and compassionate course.
Weâ€™d love to hear what you think about our Colleagues and our Company. Please contact us through our website, hospicecompassus.com.
We are using this issue of Everyday Compassion to support this priority and to encourage these practices. In this issue, you will find stories about chaplains, bereavement coordinators, volunteers, and others who have led by example. They have served our patients and supported their survivors. Their presence has aided in deeply personal transitions from loss, through grief, to healing. They have found ways to meet the challenge of the human condition, and they inspire us with their excellence, their integrity, and their compassion. Please read and enjoy. As always, we are interested in your reaction to our words, and we are eager to hear and to share your stories.
Jim Deal Chief Executive Officer
Finding Hope After Loss
The Importance of Goodbye Lessons I learned from my father
Everyday Compassion is published periodically by Hospice Compassus. Please address any comments or questions to: Editor, Everyday Compassion, Hospice Compassus, 12 Cadillac Drive, Suite 360, Brentwood, TN, 37027.
Faith Lost and Found Anew . . . . . . . . . . . . . . . . . . 9 Camp Projects Help Kids Grieve . . . . . . . . . . . . . . 12 Rules of Grief . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 The Healing Powers of Letter Writing . . . . . . . . . . 17 Building a Bereavement Toolbox . . . . . . . . . . . . . 18 The Art of Missing You . . . . . . . . . . . . . . . . . . . . 19 How Grief Can Change Your World . . . . . . . . . . . 25 Love & Loss – Treasured Letters . . . . . . . . . . . . . . . 26 What to Do when Faith Ruptures . . . . . . . . . . . . . 27 Lessons from the Dying . . . . . . . . . . . . . . . . . . . . . . 28 The Importance of Goodbye . . . . . . . . . . . . . . . . . 32 Healing through Art . . . . . . . . . . . . . . . . . . . . . . . . 33 Accumulated Grief and Healing Rituals . . . . . . . . 34 How to Help a Grieving Friend . . . . . . . . . . . . . . . 35
A Walk to Remember . . . . . . . . . . . . . . . . . . . . . . . 4 The Cruise Crew . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Grateful for Chocolate . . . . . . . . . . . . . . . . . . . . . . 5 All Dolled Up . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Compassion at Carnival Time! . . . . . . . . . . . . . . . . 6 Cultivating Life after Loss . . . . . . . . . . . . . . . . . . . . 7 Living the Dream . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Making a Big Difference in Small Ways . . . . . . . . 8 Honor Flight Lifts Veterans’ Morale . . . . . . . . . . . 10 My Mother’s Final Days . . . . . . . . . . . . . . . . . . . . . 15 The Art of Being Thoughtful . . . . . . . . . . . . . . . . . 16 Living Hope . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Hospice Compassus and Living Hope International Exchange Program. . . . . . . . . . . . . . 23 Masterpiece . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 When Words Fail . . . . . . . . . . . . . . . . . . . . . . . . . . 27 The Most Beautiful Cake . . . . . . . . . . . . . . . . . . . . 30 The Blessing of Hands . . . . . . . . . . . . . . . . . . . . . . 31
We Want to Hear from You! PUBLISHER: Hospice Compassus EDITOR: Brooke Legnon ASSISTANT EDITORS: Jan Shaffer; Dan Reeder, Tallgrass Studios, Inc. CONTRIBUTORS: Justin Goar, Richard R. Handy, James Parker, Jane Flowers, Bonnie Thibodeaux, Patricia Green, Joseph Kralik, Debbie Coots, Morgan Chilson, Autumn Skinner, Bailey Morledge, Lyndsey Adams, Jackie Bustamante, Deborah Andrews, Linda Tillery, Paul Petrocci, Joanna McDowell, Sharon Blackwell, Gail Husted, Missy Wolf, Gaye Lisby, Daniel Riggs, Carolyn Roper-Fowlkes, Sharon Cates. CREATIVE: Tallgrass Studios, Inc. Copyright © 2013 Hospice Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the prior written consent of Hospice Compassus.
We are always looking for ways to make Everyday Compassion even better. If you have any questions, comments, feedback, or would like to read about a specific topic, we want to know it! Contact us by filling out the Reply Card or by emailing us at Everyday.Compassion@hospicecom.com. We look forward to hearing from you!
A Walk to Remember
ospice Compassus staff enthusiastically participated in the Baton Rouge Alzheimer’s
Services’ annual “Walk to Remember” in October on the campus of Louisiana State University. Attendees were treated to fantastic weather in a morning filled with food, fun, and games. The event honors family and loved ones who have suffered from Alzheimer’s and creates awareness in the community about the disease. The Baton Rouge contingent distributed balloons and tasty hot dogs and educated visitors to our tent about the services that hospice provides. The highlight of the day is the 5K walk/ run. This year our own Director of Clinical Services, Allison Crochet, finished first in her division with an impressive time of 23 minutes. Congratulations, Allison! From L-R: Jaime Lowery, Tolisha Wallace, Jackie Jordan, Julie McCarthy, Shannon Forman, Joe
– Justin Goar, Volunteer Coordinator Baton Rouge, Louisiana
Buckley, Allison Crochet, Carter Crochet, Donna Lofton, Amy Ramagos, Amy Young, Cary Walters, Jeremy Ramagos, David Waite, Melissa Cothern, Sommer Stewart, and Justin Goar.
The Cruise Crew B
ill Jones, 53, lives in Gulfport, MS, with his wife of 12 years, Janice. When Beverly Brown, MSW, made her initial visit, she discovered that the couple spent most of their time crying. Determined to change this, she began to explore their unfulfilled dreams, one of which was to take a cruise. When Beverly shared this with me, I immediately started contacting the necessary community resources to make their dream come true. I discussed the vision with Carrie Mattern, Executive Director, and together we worked through
the logistics for the plan. Within a week the plan had been implemented, the money was in hand, and the tickets were purchased. Beverly and I then went to Bill and Janice’s home, presented them with their tickets, and told them that dreams really do come true. This time, their tears were tears of joy. One individual gave an anonymous gift of $300 to make the trip more enjoyable. Upon their return, Janice initially said they’d had a fantastic time, and the phrase, “It was awesome!” was repeated several times.
Most people think hospice is about dying; but at Hospice Compassus, it’s really about living and quality of life. – Richard F. Handy, Chaplain Gulf Coast, Mississippi
uriel had a very short life expectancy when she arrived at her daughter’s home from the hospital. Nonetheless, she preferred to be in the warm surroundings of home and family in her final hours. But the TLC provided her by family members, and the supplemental care given by our hospice team, changed everything. It wasn’t long before Muriel was issuing directions about her meals, her bed, her general care. This was a good sign, especially since she did it with a sweet, compliant disposition. A few months passed. Muriel had all the comforts of home, though she was restricted to her house and soon became bed-bound. Her family spoiled her. She had a private room with TV and a great view of the outdoors, which highlighted birds feeding, squirrels playing, and assorted flowers smiling back at her. Muriel loved visits from family and friends, her daily devotional readings, and chocolate. Her breakfast always consisted of oatmeal, but with a surprise. Her son-in-law would serve up the oatmeal with different toppings every day – fruit, candy sprinkles, nuts, and yes, chocolate. “My name is Muriel, and I’m a chocoholic,” she would often quip. So though the chaplain did a double-take when he saw a Hershey chocolate bar clutched in her hand as she lay peacefully in her coffin, it all made sense. “She needed one for the road,” her daughter explained. Muriel was a long-term patient with our hospice team. Team members often commented that she blessed and energized them on each visit. Her quick smile, her optimism, and her bright outlook never failed to lift the spirits of those who visited. In her final months she taught us all to value people, to cherish memories, to live each moment to the fullest, and to thank God for chocolate!
All Dolled Up I
n January, the Jimmy Furlow Senior Citizen Center in Brookhaven, MS, hosted “Glamour Shots” with Hospice Compassus. Attending were residents from Golden Living Center/Brook Manor, Countrybrook Living Center, Silver Cross Nursing Home, and friends from the community. The event was staffed by two Hospice Compassus Colleagues from the McComb office – Kim Hodges, Hospice Care Consultant, and Pepper Whitehead, Volunteer Coordinator – along with Philip Brown, HCC from Columbia, and Jane Flowers, HCC in Brookhaven. Jane and Pepper performed total makeovers for the delighted ladies, followed by photos with props by Kim and Philip. Participants laughed, joked, and shared as they waited their turns and watched their peers get the magic makeover. And in the end, they all felt pretty – which was the point. Special thanks to the Jimmy Furlow Center, all who gave their time, and those who donated supplies, as well as the activity directors and other supporting staff from the nursing homes and senior center. “Glamour Shots” meshed perfectly with Hospice Compassus’ goal: to provide high-quality care and make every moment of life meaningful. Three “glamour gals” pose for pictures, above: Ruby Rippy, Vernastine Byrd, and Joyce Pennington. – Jane Flowers, Hospice Care Consultant Brookhaven, Mississippi
– James Parker, Chaplain/Bereavement Coordinator Baton Rouge, Louisiana
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Debbie Crawford and Peggy Brown.
The Krewe of Slidellians on their float. From left to right, Cheryl Bays, Patricia Green, Lisa Sacks, Bonnie Thibodeaux, Madison Prattini, and Cheryl Schmitt.
Compassion at Carnival Time!
hen Mardi Gras is in full swing, parades are a part of daily living in southern Louisiana. The Slidell Program thought this would be a wonderful opportunity for community outreach. Hospice Compassus increased civic and community awareness by riding in the Krewe of Slidellians on Jan. 20, 2013. The parade is sponsored by the Slidell Woman’s Civic Club and showcases various local facilities and organizations, with the help of the East St. Tammany Chamber of Commerce. The theme of this year’s parade was “Our Louisiana Heritage.” A big part of that heritage is caring for one’s family, which happens to be what hospice is all about. It was a family affair all along the parade route. We wanted to keep our motto of compassion in mind when deciding what to throw to parade-goers. Beads were purchased from STARC, a local organization which employs individuals with disabilities, giving them a chance to be productive community members. Jar openers, cups with the Hospice Compassus logo, and stuffed animals adorned with Hospice Compassus ribbon were among the items passed to the crowd. The elderly folks particularly enjoyed catching specialty bags containing rubber jar openers and beads wrapped in blue and gold ribbon.
Janice Femal, RN Case Manager, was moved by the response of a wheelchairbound spectator, who caught a plush rose from Janice. The elderly woman’s face lit up with joy, and she blew Janice a kiss. At that moment it became very evident once again how even the smallest acts of kindness can make a difference. As stated in our mission, hospice care affirms the belief that it is important to make every moment of life as meaningful as possible.
Janice Femal, Gene Bays, Kristin Green, and Bonnie Thibodeaux.
– Bonnie Thibodeaux, Business Office Coordinator Patricia Green, Team Coordinator New Orleans/Slidell, Louisiana Channon McGee and Cheryl Schmitt.
From L-R: Cheryl Bays, Peggy Brown, Lisa Sacks, Jennifer Stringer, Bonnie Thibodeaux, Madison Prattini, Amber Prattini, Stephanie Luhta, and Patricia Green.
Living the Dream T
Lisa Story and Tom Carson stand by their holiday cart display of plants.
Cultivating Life after Loss A
s part of our commitment to help family members cope with the loss of a loved one, our Bereavement Coordinators work one-on-one with anyone needing emotional support up to thirteen months following their loss. Lisa Story, one of our Spiritual Counselors and the Bereavement Coordinator in the Pittsburgh office, utilizes her training in horticulture therapy to incorporate plants and gardening in the healing process. By focusing on the life cycle of plants and the care required to cultivate life, horticulture therapy aids in the healing and rehabilitation process, especially for those who have difficulty connecting with their emotions. Horticulture therapy is even helpful for people with physical, mental, emotional, or social disabilities, as they derive benefits from working with and caring for living plants. Over the past year, Lisa has been helping one gentleman at Kane Glen Hazel, a long-term care facility in the
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area, as he deals with the loss of his mother. The garden cart they created not only provided an outlet for Tom, but also added beauty to the solarium at the facility and provided a place of solitude and peace for other residents as well. Throughout the year Lisa and Tom grew plants from seed and enjoyed the fruits of their labor. During the holiday season they worked together to help turn the garden cart into a living seasonal display that brightened the spirits of everyone who walked through the lobby. The cart incorporated evergreen trees, rosemary plants shaped into miniature Christmas trees, poinsettia plants, and live garland. It was a beautiful display of living color, as well as a display of Tom’s work toward healing, which continues to brighten the halls and the souls at Kane Glen Hazel. – Joseph F. Kralik, Jr. Hospice Care Consultant Pittsburgh, Pennsylvania
erminal illness does not discriminate. It doesn’t recognize or acknowledge special occasions such as age, birthdays, or anniversaries. Even though a life expectancy can be estimated, there is no way of truly knowing the exact hours of living we have to celebrate. As Hospice Compassus Colleagues, we enter into our patients’ lives at a point in time when their journey down the highway of life may often be curvy and bumpy, with many obstacles in their lane. We are given the golden opportunity to offer them a lift down that difficult road. There are many lessons to be learned if we listen with our hearts. Recently, one of our patients had a “dream” of surprising his wife with an early anniversary dinner. The couple had always looked forward to and enjoyed going out to eat together. However, due to his illness they had not been able to go for out some time. There was such a longing to experience again those special moments together, so he expressed his wish to our team. As you can see in the photograph, time stood still for them. It really doesn’t take a lot to mean a lot. Sometimes the simplest of things that we take for granted every day could mean the world to someone else. Time is precious! Life is short! Live. Love. Laugh! – Debbie Coots Volunteer Coordinator Jefferson City, Missouri A special thanks goes out to our Dream Team members who made the surprise anniversary dinner a reality: Annette Holt, Director of Clinical Services; Katrina Schellman, Social Worker; Judy Williams, Hospice Aide; Brenda Knipp, Volunteer; and Chaplain Jeremy Caudel for his prayers.
Making a Big Difference in Small Ways
The Community Hospices of America Foundation uses donated funds to make grants that help patients and families being served by hospice
W By Morgan Chilson Contributing Writer
hen families come to Hospice Compassus, they are experiencing the most difficult times of their lives. It takes a team of people working together to offer the support and services that make hospice care effective. The frontline, most visible members of the team are physicians, nurses, aides, social workers, chaplains, and volunteers visiting patients in their homes. But behind the scenes, many Hospice Compassus locations are also supported by the Community Hospices of America Foundation, a not-for-profit organization that helps patients and family members through this incredibly tough time.
CHAfoundation Community Hospices of America Foundation
The Community Hospices of America Foundation uses donated funds to make grants that help patients and families being served by hospice. The grants are made in five categories: • Patient Care • Family Support • Volunteer Enhancement • Community Education • Dream Projects (These grants help people facing the end of their lives to fulfill a dream. For example, one little girl wanted to see the ocean, while other people have taken trips to see family members.) In addition to grants from $101 to $1,000 made by board directives, hospice locations can request that they be given $500 to handle requests below $100. Visit www.chafoundation.org for grant applications or more information.
Located in Springfield, MO, the Foundation’s all-volunteer board uses donated funds to help patients and families pay for expenses not covered by Medicare or private insurance. “It takes the hurt off of smaller things that shouldn’t be aggravating a person who’s spending their last days here,” said Dorsey Levell, founder and president of the Foundation. “We’ve just got to make a little bit of difference. A quote I like is ‘the goal of a human life is to make the world a little better place,’ to dilute the suffering.” Patients and families can apply through their Hospice Compassus offices to receive a grant from the CHA Foundation. Most requests are under $1,000, and they’ve been used for a variety of things that crop up to challenge and stress patients. From an air conditioner for a Baton Rouge, LA, patient to dentures and eye glasses for patients in Lafayette, MS, the Foundation reaches out to impact many areas of life. Grants are given in five areas (see box) and for amounts of $101 to $1,000, unless otherwise approved by the Foundation’s board. While many of the requests have been romantic or touching (the Foundation paid for a patient’s wedding and honeymoon), most are for routine and very practical purchases. But those simple things – dentures, wheelchairs, paying water and gas bills – give peace of mind to patients and families grappling with much more serious issues. Levell launched the Foundation when his son, Rocky Levell, a compounding pharmacist, purchased a hospice company, which eventually became Community Hospices of America and then part of the Hospice Compassus family. He learned of the challenges faced by patients and felt compelled to help. A lifetime of experience in non-profit work, including leading the Council of Churches of the Ozarks and other non-profits, led him to organize the CHA Foundation in 2001. It quickly became apparent the Foundation couldn’t operate like his previous nonprofits, Levell recalled. When the board met every three months, it was too late to fulfill many of the grant applications. With lives
While many of the requests have been romantic or touching, most are for routine and very practical purchases. But those simple things – dentures, wheelchairs, paying water and gas bills – give peace of mind to patients and families grappling with much more serious issues. on the line, they set up a plan to meet daily through email. The Foundation’s secretary, Rachel Snider, alerts the board when requests come in and takes care of the paperwork when the board decides to fund a grant. CHA Foundation has been more successful than its author dreamed. “It basically works off the good hearts of people who want to donate,” Levell said. “It’s the only organization – and I ran 16 separate not-for-profit corporations before I retired – where people give you more money than you can legally spend. The families want to provide the same help they’ve received for somebody else, so the money just flows in.” Currently the Foundation has more than $1 million in assets. Donations can be made online or through member associations, which are hospices that apply to be part of the CHA Foundation’s giving network. Whether paying a mortgage payment as the Foundation did for a Hospice Compassus patient in Columbia, MO, or reaching out to hold a volunteer banquet as they did for the Jefferson City, MO, office, the focus of the Foundation’s work is making a difference. Levell puts it several different ways: Relieve suffering. Dilute misery. Solve problems. Whatever the terminology, the work done by the CHA Foundation assists patients and families throughout the country and does much to support the mission of Hospice Compassus. For more information about the CHA Foundation, visit www.chafoundation.org or call (417) 327-9533 or (417) 839-4342.
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Faith Lost and Found Anew Autumn Skinner and her son.
How an Adolescent Coped with the Loss of a Parent
y mother had a heart condition for most of her life. The doctors did not expect her to live past my eighth birthday, but she lived life to the fullest. She was a wonderful cook and had a beautiful smile. She was so sweet and generous, and she had a great love for animals. My mother was aware of the severity of her illness, but she always told me she would make it to my high school graduation. She died shortly after my 17th birthday, before I was able to graduate. After her death, I worked to save enough money to pay for her burial. I had always had a strong faith, but following her death I became angry at God and did not understand why He would take her away when I still needed her. I rebelled and made some choices that were not the best for me. Over the next year, I was able to re-establish my faith in God and realize that my mother was placed on this earth for a purpose, and that God had allowed me to borrow her for a short while before it was time for her to return home. I missed my mother the most while I was pregnant with my son. I wanted to ask her when she first felt me kick and what to expect. I see my mother in my son – a small part of her lies within him. My life is now heading in the right direction, and I am determined to succeed for my son and my mother. I am enrolled in college, and I am proud of the decisions I’m making for myself and my son. I would tell others who are struggling with the loss of a loved one to stay strong in your faith. It is okay to be upset with God for a little while. But He will take care of you. – Autumn Skinner Youth Villages Transitional Living Young Adult
H H H H H H H H H H H
Honor Flight Lifts Veterans’ Morale P
lanes, trains, and automobiles—but mostly planes! On November 6, 2012, the Central Missouri Honor Flight took off from the St. Louis airport on its twenty-first flight with a group of sixty-seven veterans and forty-three guardians. Honor Flight, a non-profit organization created for the sole purpose of honoring America’s veterans, sponsors flights completely free of charge to transport these honorable men and women to Washington, D.C., to visit the numerous war memorials that serve as tributes to their service and sacrifice. The organization caters to all medical and mobility concerns; and invitees travel with a team of doctors, nurses, paramedics, and even younger veterans, all serving as personal guardians to these special guests. This particular Honor Flight was especially well supplied, since on board were two Colleagues from Hospice Compassus in Missouri: Heather Bax, Clinical Liaison in Jefferson City, and Cheryl Wallace, RN Case Manager in Columbia. Heather’s grandfather had participated in Honor Flight in 2011, so she felt
By Bailey Morledge Human Resources Intern Brentwood, Tennessee Corporate Office
inspired to give back to a community for which she cares deeply. With the support of Hospice Compassus, she and Cheryl applied online and found that even though the flight itself is a short one, there is an immense amount of planning and preparation that goes into the process. At a pre-flight meeting in Columbia, they met their assigned veterans. Heather was assigned twin brothers from Fulton, who turned out to be relatives of a Hospice Compassus Aide, making the flight even more meaningful for her. On their extraordinary, day they left the hotel in Columbia around midnight on two Greyhound buses traveling to St. Louis, where they boarded a Southwest Airlines flight. In Baltimore there were Navy Seals lined up to greet the veterans and shake their hands, a moment Cheryl remembers
as being incredibly special. After this warm welcome, the group boarded Greyhound buses again and had a police escort for their tour of Washington, D.C. First stop – the World War II Memorial. Next it was on to the Vietnam War Memorial and the Korean War Memorial, followed by the Women in Military Museum, Arlington Cemetery (where they witnessed the changing of the guards), the Marine Iwo Jima Memorial, and finally the Air Force Memorial. At the end of this whirlwind day of touring, the police escort directed the group to Baltimore for the return flight home. On the flight back to St. Louis, there was a unique and exciting surprise for the veterans. Just one of many wonderful traditions that have become part of this Honor Flight experience, Mail Call is a time when the participants receive letters from family, friends, and even strangers thanking them for their service and sacrifice. When each and every person had received these unexpected and handwritten notes, Heather
H H H H H H H H H H H recalls, there was hardly a dry eye on the plane. The veterans were all so appreciative, and Heather says it made her “stop for a second to realize how often a little can go such a long way.” Cheryl heard the story of a Korean War veteran who grew up as an orphan, bouncing from one foster home to the next. While in the service he gave up on attending Mail Call, because he never received letters from anyone. So when he got his letters from admiring and appreciative citizens during Mail Call on the Honor Flight, this gentleman cried like a child; the letters were so dear to him that they were in his hand the day he passed away.
By the time the group was on the final bus ride from the St. Louis airport to the hotel in Columbia, they had been awake for twenty-six hours. Bodies tired and hearts full, they looked out the windows to see the Patriot Guard on the exit ramp of the highway, along with 107 Harley Davidson motorcycles, all waiting to escort these guys back to Columbia at 12:30 in the morning. At the hotel, Cheryl estimates there were at least 1,000 people waiting with flags and signs; and as each veteran got off the bus, his name was announced on a microphone and the crowd erupted in applause.
Even though visiting the city was a phenomenal experience, in the end the sights and sounds of Washington, D.C., were not what mattered most. In Heather’s opinion, “the highlights of the trip were sharing stories, reminiscing about long-ago events, receiving all the appreciation, and the well-deserved welcome home.” Ranging from anticipation, excitement, organized chaos, appreciation, tears, and exhaustion, this trip was an amazing emotional rollercoaster, but one that Heather and Cheryl agree they “would do again in an instant!”
Left: Local citizens came to support and cheer on the veterans as they got off the bus after the excursion. Right: Heather Bax, left, and Cheryl Wallace, right, in Washington, D.C., while on their Honor Flight.
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Camp Projects Help Kids Grieve By Morgan Chilson Contributing Writer
rom Nurses and Aides to Social Workers and Chaplains to Bereavement and Volunteer Coordinators, Hospice Compassus staff members care for those affected by life-limiting illness â€“ first the patients, but also those who love them. In Galesburg, IL, Bereavement Coordinator Doug Gibb reaches out to children who have experienced loss by coordinating a one-day Childrenâ€™s Grief Camp twice a year. The camp started 18 years ago, and today it serves 40 to 60 children, ages 5 to 18. The camp engages children in a variety of activities that help them deal with their loss. Those
who come to the camp have lost brothers, sisters, grandparents, parents, even friends, Gibb said. “Some of our kids come back for years.” Through a variety of projects adapted for different age groups, Gibb and other camp staff help the children deal with their grief in positive ways. Kids create murals and do art therapy with a local artist, play games with beach balls that have questions written on them (whoever catches the ball answers the question), journal, and make bracelets, among projects that change every year. They especially love the therapy dogs’ visits. Another really popular undertaking involves inviting the kids to bring cloth or clothing of some kind that reminds them of their loved ones. Material is available for those who don’t bring anything, and they can pick out a meaningful color or pattern. Then volunteers help the kids turn the fabric into pillows. “Once in a while somebody will bring a shirt in, and we let them get it stuffed and we’ll sew up the shirt,” Gibb said. “We do that even with kids who have lost a baby brother or sister, and they’ll bring in their little onesies.” The camp has changed over the years, as staff look at the evidence-based research on ways to help children cope with death. “We offer a lot of different things. Grieving is a very individual process. For instance, for years and years we talked about whether children should attend a funeral. You still get some of that. But a lot of the research says if they’re old enough to love, they’re old enough to grieve.” One of the last events of the day at camp is a balloon release. The kids write a message to their loved one, put it inside the balloon, and then release them all at once. “We go outside, clear down by a pond on this hill, and it’s neat to see 50 to 70 of them go off at one time. Last year, for the first time, I brought in butterflies that we released. The kids really liked that,” Gibb remembered. It’s clear the Children’s Grief Camp is a place for fun as well as healing.
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Facing page: The balloon launch, which is done every camp session. The children write a message and then release the balloons. Top: A butterfly from the release. Middle: Doug Gibb during sharing time. A little girl is telling about the pillow she made in honor of her loved one. Bottom: The camp’s trained therapy dogs and their owners visit every year.
Rules of Grief Three Healthy Ways to Deal With Loss
red Bacon, Chaplain and Bereavement Coordinator in Dallas, TX, is blunt about the effects of grief: “If you don’t deal with grief in a healthy way, you will deal with grief in an unhealthy way.” He’s not harsh in his assessment, just honest about the fact that we can make grieving even harder than it already is. People have a tendency to want to be “rough and tough and hard to bluff” to avoid exposing their weaknesses. Instead, he said, three basic steps will help with what can be a long path to healing. “Grief comes in waves, and each time we deal with a wave properly, we’re better prepared for the next one. We have coping skills and coping tools that we’ve learned to develop so we can handle it,” he said. Bacon’s “rules” aren’t, of course, really rules. Everyone handles grief in different ways. But he tries to introduce people to these important guidelines to get them started on healthy grieving: 1. Acknowledge the loss. “We men are the worst,” he admitted, pointing to that old rough-and-tough saying. “We want to go on as if nothing happened, and that just doesn’t work. This huge thing has happened to us, and we’ve lost this incredibly important person.” It’s important to acknowledge the loss – that it’s real, that it hurts, and that part of us is missing now. 2. Participate in the rituals. “There’s a big move in our culture today to do away with some of the rituals,” he said. “People don’t want to have memorial services or funerals – they think they’re too sad or maudlin. Yet those services are needed exactly because they are sad. They give us a chance to express our grief.” 3. Find someone to talk to. “It’s going to have to be a really special friend that you talk to, because what that friend’s going to have to listen to, sometimes, are the same stories over and over again. Telling stories one time is just not going to be enough. If grief takes 18 months to two years, it’s going to take a special friend who’s willing to listen.” Bacon recommends journaling if there isn’t a person to talk with, since the act of writing about feelings can assist in healing them.
By Morgan Chilson, Contributing Writer
Grief and death change us. You’ll never be the same again. ...You need to work through the grief and come through the other side. You’ll come out a different person, but hopefully you’ll be a better person.
By doing those three things, Bacon believes you can help yourself as you begin healing. People who don’t find some way to handle all of their emotions become like Mom’s old pressure cooker that wasn’t set just right. “At some point the steam inside causes the whole pot to blow up,” Bacon said. “Six months, a year, sometimes even more, two or three or five years down the road, there’s this enormous explosion of emotion. No one knows where it’s coming from, and it’s difficult then to attach it back to that grief.” Bacon loves the opportunity he has to work with people during this part of their lives. “I get to help people understand that grief takes more than time,” he related. “‘Time heals all wounds’ – that’s only half true. It takes effort and energy as well. The unrealistic expectation people have is that they’ll go back to being who they were before. Grief and death change us. You’ll never be the same again. So I try to reassure people that the goal needs to change. You need to work through the grief and come through the other side. You’ll come out a different person, but hopefully you’ll be a better person. Grief is such a powerful, powerful thing.”
My Mother’s Final Days
y personal phone was ringing at By Lyndsey Adams I visited when I could and phoned often; Hospice Care Consultant work. It was a very busy morning but the conversations quickly digressed Sedona, Arizona and I wondered who might be calling into what was going on with the family, me. My friends knew I wouldn’t interrupt so our relationship had never deepened. my work to take a private call; but for some reason And so the years went by, Mother travelling to I felt compelled to reach into my purse and answer. wherever she wanted to go and letting us know by It was my mother’s voice on the other end of the way of the grapevine, and me inventing my own life. line. I sat straight up in my chair and listened closely And then came her fateful phone call. Mother had to her words, for she rarely called me. “You need breast cancer and was going on hospice service. She to come home,” she said. “What’s the matter?” “I was asking me to quit my job and go to another state, need someone here, and you are the logical person.” where I would move in to take care of her. In all hon“Mom, can you tell me what’s the matter?” She esty, I would have done it just for the chance to find hesitated and then said, “I need you.” For a moment an entrance into her private world. She did say I was my mind went blank – my mother needed me? the logical one of four siblings, so I obeyed and went. To understand this conversation, you’ll need a During the next seven months, I cared for Mother. clearer understanding of my mother. She was born It was awkward at first; we both knew she did not during the Depression and reared on a cattle ranch. want me there, and yet she needed me. I found a While fully participating with her family in all aspects way to assume the role of a daughter as hospice took of survival during those years, Mother had found a the leading role of caregiver. Mother accepted their way to reinvent herself; she’d used her beauty and help gracefully and mine unwillingly. sense of adventure to her advantage. Was the journey stressful? To say the least. Would My mother was fiercely independent, and woe to I do it again? Absolutely. anyone who dared deny her that. Mother became I got to be with my mother when the doctor one of the first horsewomen in Arizona rodeos. I have shouted across a waiting room full of people, “Oh, a picture of her on the back of a bucking Brahma bull, by the way, the cancer has spread to the liver. See her hand raised high in the air in full confidence she’d you tomorrow.” As we sat together in silence and complete the ride. I once found her picture in a book absorbed the shock of his inconsiderate announceabout western women, singing in a country band ment, a bond was finally formed between us; and entertaining troops coming through on trains during from then on my mother let me in as best she knew World War II. She was a stunt woman in movies, how. She allowed me to brush her hair, read her Bible falling down stairs and galloping horses across the to her, and – as things progressed – hold her hand. prairies. And she once found someone to teach her to I was the one privileged person who watched as fly a plane, which she flew under a bridge in a canyon she found another world, and I got to say, “I love to prove to herself it could be done. you” as she slipped away. Growing up, I quickly discovered and embraced My journey after her loss and the grief that both Mother’s love of adventure and the deep ensued has taken many turns, but healing depression she felt for not having the full range of has come through my acceptance of opportunities she longed for. Her resentment over the bereavement process the limitations brought by having children was felt and of Mother’s right deeply by both of us, and perhaps that sadness is what to live her life as she separated us. Mother was far too private to allow me chose. access to her inner world, which may explain why we never bonded in the mother-daughter relationship.
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The Art of Being Thoughtful A text last night to my friend:
Thinking of you. Hope the appointment goes well tomorrow.
Thank you for remembering. You are one of the most thoughtful people I know.
his entire interaction took seconds, but my friend knew I cared and remembered. When examining her statement back to me, I have to wonder – really? Am I truly one of the most thoughtful people that someone knows? What’s that about? What makes me different? Could thoughtfulness be a genetic factor, like being gifted at music or sports? Could thoughtfulness be an environmental factor? If I can be one of the most thoughtful people someone knows, there’s hope for everyone. People care. I see it every day in the excellent hospice services we provide. Some people just haven’t developed a way to convey their caring into the Art of Being Thoughtful.
Thoughtfulness is a learned, intentional act, becoming a habit and second nature when practiced. Here are some ideas regarding thoughtfulness in relationship with those who are grieving. A – Acknowledge the Death. Some people are so uncomfortable with death that they avoid acknowledging the loss. You can be thoughtful by just doing something simple – send a card, attend the visitation or funeral service, make a donation in memory of the deceased, take some food or cookies, call the bereaved, offer simple condolences such as, “I am so sorry” or “I care about you.” C - Continue to Remember. Many bereaved are concerned that after a month or so people seem to forget they are still grieving. The sympathy cards stop coming, and they feel no one wants to listen to them share their sadness. Be thoughtful by making an effort to remember and acknowledging significant dates (the bereaved person’s birthday, the deceased person’s birthday, the anniversary of the death), or write a note after a few months to say you are thinking of them. Maybe include a favorite memory of the deceased. Invite the bereaved person to lunch or coffee. He or she may refuse but will appreciate the gesture. T – Take Time to Listen. Many bereaved individuals say that one of the most beneficial things is to talk it out. You can be very helpful by practicing active listening. It is often difficult at first, and sometimes uncomfortable for the listener; but if a grieving person starts to talk about the loss or loved one, don’t change the subject, offer advice, or talk about yourself. Learning to sit in silence and just be present with the grieving person is one of the most wonderful gifts you can give. It is most helpful for them to have someone listen attentively and in a non-judgmental way. Convey your thoughtfulness by making it all about the other person. We all care about each other to some degree, and we especially care about those who are going through a time of sorrow. Thoughtfulness is really pretty simple. It’s just being kind, and considering what people might need.
By Jackie Bustamante, LBSW Bereavement Coordinator – Jefferson City, Missouri
Te Healing Powers of Letter Writing By Morgan Chilson, Contributing Writer
he five stages of grieving identified by Elisabeth Kübler-Ross – denial, anger, bargaining, depression/sadness, acceptance – are well known to many people. Although Bereavement Coordinators are schooled in those stages and see them often, they also know that people grieve differently; and supporting them during that process is how Bereavement Coordinators spend their days. Individuals tend to stick with formulas from past relationships – a mother we always fight with or a father who is easy-going and with whom we can talk things through easily. These formulas of interaction impact the way we go through the grieving process for different people in our lives. Understanding the variations of grieving and adapting to what each individual needs is what Bereavement Coordinators do. For Janine Affeldt, Bereavement Coordinator in Payson, AZ, there is one main component to her job. “It’s critical to reach out,” she said. “That is probably the most important piece in terms of the work we do – to be able to really listen and just ask questions that prompt people to talk and tell their story.
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They can come back and tell their story over and over and over again, and that’s okay. It’s a safe place to do that, and a place that they can release a lot of that emotion. “Grief is not a race, it’s a process,” she added. Affeldt said she’s careful to let groups and individuals know some of the things that grief can do to you. “It impacts our entire being, emotionally and physically and spiritually and socially,” she said. “It hits us in all areas. Literally, I have had people call me and ask if they are going crazy. Grief can cause you to have scrambled eggs for brains for a while. That can really alarm people when they experience it, if they don’t know it’s a normal stage of grieving.” One way to work through grief that Affeldt recommends is writing a letter to the loved one who has died. One woman who lost her husband would wake up at night and be unable to go back to sleep. She was crying a lot and just feeling the loss of her husband, Affeldt said. After
hearing about letter writing, the woman would write when she woke up and it made her feel close to her husband. At first, she wrote every night, and then the need to write gradually lessened. Letter writing works when emotions are more tangled, as well. A woman whose husband died of cancer struggled during his last weeks of life because his illness changed him. He became angry and said mean things. “She felt like there was no way she could reconcile that situation or those emotions,” Affeldt said. “I suggested the letter writing to have that connection with him and talk about how she felt about the things he said to her when he was so sick. A lot of those icky feelings and emotions that she had carried with her dissipated.” The letters are good, too, for people to look back on and see how far they’ve come. “Sometimes people need to know what they can do to get through this. ‘It just takes time,’ you can say,” Affeldt said. “That’s a hard thing for them to hear, because they want to have something tangible. Writing a letter is a real tangible thing to do.” Affeldt also believes some type of memorial or gathering can be important to the grieving process. “I hear many, many families say, ‘Well, Grandma didn’t want anything,’ so they don’t do anything. I encourage families by telling them the memorial is a time for you, for the people who are left behind. And it could be something small, or a big memorial celebration of life.” No one way helps everyone, but Bereavement Coordinators can help anyone find a path to healing.
“Grief is not a race, it’s
Building a Bereavement Toolbox Thinking “outside the box” encourages new ways to offer bereavement support By Deborah Andrews, LCSW, CT Bereavement Coordinator – Springfield, Missouri
As hospice continues to respond to new challenges in caring for a diverse population of end-of-life patients, bereavement professionals are using new models to provide the best interventions for a wide range of those patients’ families and friends. A program by the Hospice Foundation of America, Beyond Kübler-Ross: New Perspectives on Death, Dying and Grief, encourages bereavement counselors to review and assess how their programs support those who are left behind.
Sunshine Lunch This program encouraged me to ‘think outside the box’ and consider some new ideas for my own toolbox, and I decided to focus on the majority population of my caseload as a Hospice Compassus Bereavement Coordinator – older widows and widowers in my service area of Southwest Missouri. The three most common problems in spousal bereavement are loneliness; tasks of daily living; and depression, morale, and mood. These led me to my first new tool, the “Sunshine Lunch.” At the end of the standard six-week bereavement support group, most attendees ask, “When will we see each other again?” So the Sunshine Lunch was born, and we’re now in the second year of meeting monthly
at a local cafeteria in a private room. Reminders are mailed to previous support group participants and to the regulars that now attend the lunch, and the notice is published in our quarterly newsletter. Some months we have fourteen attendees and other months only four. Among the comments are, “This gives me a reason to get out today,” “It’s comforting to be with other people on the same journey,” and “It’s hard to go out and eat alone.” On a day I will never forget, a gentleman walked in with his food tray and said, “I knew you would be here.” He had attended our grief support group after the death of his wife almost a year earlier and had come to a few lunches, but then we hadn’t seen or heard from him for at least six months. He told us about the sudden tragic death of his granddaughter, and he said he needed to be around people who would understand and listen to his story. As you can well imagine, I’ll be at the cafeteria the second Wednesday of every month whether four or fourteen show up, for we have created a safe place, a comforting place for those who are grieving.
Cooking for One My second tool came from an idea one of our sister offices offered in Jefferson
City, MO. A locally owned grocery chain in Springfield recently remodeled a store, adding a demonstration kitchen and cooking classes. We consulted with the chef and reserved time for our group to offer Cooking for One. This is similar to the Sunshine Lunch; but instead of loneliness and morale, it’s focused on a task of daily living – learning how to cook (especially for men) and getting new ideas for small, healthy meals. The initial invitations went out and both men and women over the age of 60 attended the class, enjoying it greatly. This has now become a quarterly event, where I see smiling faces and people who are enjoying new company and learning to adjust.
Feeling Better Bag When patients are admitted to hospice and children are in the home, new challenges are presented to the hospice team in providing families with support for children dealing with grief. A new tool called the “Feeling Better Bag” grew from the need to have information ready on a moment’s notice to take to families with children. The “Feeling Better Bag” for young children has a hospice coloring book, a “How I Feel” coloring book for grieving children, Sesame Street DVD/book kit
“When Families Grieve,” crayons, a heartshaped bag filled with scented rice, plus information for the adults on how children grieve. The teen “Feeling Better Bag” has a journal for recording memories, colored gel pen, CareNotes for grieving teens, and a scented heart bag. Now I see relief on the part of the staff, knowing they have concrete information to offer caregivers; and I also see relief in the faces of parents as they receive help that gives them hope for their children.
The Art of Missing You Written for my husband and best friend By Linda Tillery
Healing Arts Art therapy and other expressive approaches have always been an interest of mine. I usually introduce coloring mandalas as a grief coping skill centered on mindfulness. I remember one woman laughed and said, “Oh really, coloring!” in a disdainful tone. She came back the next week with several colored mandalas, along with her new set of colors. By trying something new and different she discovered a relaxing activity. However, not everyone has the same reaction. In a different group we put small clay pots in plastic bags and dropped them, as a symbol of broken life, and I instructed the members to put their pots back together as they see themselves now. Glue, paint, stickers, and a multitude of crafting materials were available. One woman sat very intently focused with only a tube of glue and said, “I want this back the way it was.” Sadly, she was not yet open to accepting her new reality and expressing her grief. My next tool will be a Healing Arts workshop, continuing to encourage attendees to be open to expressive approaches. I started looking around for an artist and found one of our hospice volunteers with an art/ decorating background. She makes collages, and we plan to have our first “Healing through Art” half-day workshop soon. Now I’ll be able to use all the magazines our staff has been bringing me for a year! I’m looking forward to seeing the faces of the bereaved as they bring memories and hopes into focus through artistic expression. Finding new opportunities to help the bereaved express their grief helps renew me as a bereavement professional, and I am encouraged as they share their lives with me.
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o begin with, I miss you. In all sorts of ways. At all times throughout the day and night. I’ve done it now for over a year. Actually it’s been 1 year, 2 months, and 22 days. I miss you when the sun is shining in a clear blue summer sky. I miss you when it finally rains after a hot, dry August. I missed you at Christmas when I put the lights on the tree, and at Easter when that little bunny hopped across the front yard. In the middle of the night, with 3:33 flashing on the clock, I miss your being on your side of the bed. I miss you when I eat supper in the kitchen. I miss you when I hold the remote, searching for something to watch on TV to divert my mind from missing you. I missed you on your birthday and on my birthday. Your funny silly cards, or – once in every few years – that totally mushy one, full of sentiment, that would make me cry because it would be so touching. And you would make fun of me; but one time, you cried too. Missing you has become an art. I am good at it. I do it all the time. It is exactly what I want to do. Missing you keeps you near. You are near. You’ll always be near. Maybe if you’d died earlier in our lives together, or if I were a 30- or 40- or 50-year-old “left behind,” or if we hadn’t been married for all those years, or if we didn’t have all this history – then maybe I wouldn’t enjoy missing you so much. Maybe I wouldn’t have discovered this new art form. This “art of missing you.” Sometimes it is painful and I feel like my heart has been torn out of my body. Sometimes I pace, going from room to room, searching for something…some smell, some thought, some memory, some essence of you. Sometimes I find it, sometimes I don’t. Sometimes missing you is as comfortable as my old, soft sweatshirt on a cold, rainy day – as comforting as a hot cup of coffee while I watch the snow blowing across the window. Sometimes I sit in your chair and feel you there. You ride with me in the car and in your old pick-up. I watched the clouds drift across the sky today. This would be one of those days we’d get in the car and go for a ride. You always drove while I looked at the passing scenery. We could ride for miles in silence. Comfortable, sweet silence. Oh, how I miss that. I also miss our conversations, our debates, our disagreements. The noise we made together. This art of missing you has no end. It continues each day. I am thankful for the life we had together. Such an education I received, and what an education I continue to get. Day after day, night after night, living and learning this art of missing you.
Inset photo: Tymali Osteen and a caregiverâ€™s son.
By Morgan Chilson, Contributing Writer
Hospice Compassus Colleagues travel to South Africa and bring home a new view of the world and hope for tomorrow
hen six Hospice Compassus Colleagues landed in South Africa last year, they arrived
in a place that would change their perspective on the world. The six took the trip to see how Hospice Compassus could help Living Hope, an organization working to combat poverty and disease and to offer hope to poverty-stricken South Africans. And while they came home brimming with the desire to reach out and support Living Hope’s mission in numerous ways, they also brought back a completely different world view. “The shanty towns, as they call them, were eyeopeners,” said Tymali Osteen, BSN, RN Case Manager in East Houston. “There was very, very severe poverty. Nobody was working; they were all just walking around and living in extremely poor conditions. They take metal sheets and put up four of them to make walls, and they put another one on top and put rocks on it to hold it down. They would all live in one room, and most of them didn’t have indoor toilets. There was one town with literally a river of sewage, and kids were even playing in it.” The shocking differences between the way we live in the United States and the deprivation in which Living Hope workers operated were everywhere the group looked. Fifty percent of the people in South Africa live in poverty, according to the CIA’s World Fact Book, and unemployment is almost 25 percent. Dr. Leon Driss, Medical Director at Hospice Compassus in White Mountains, AZ, said the current (Continued on next page)
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situation in South Africa began after apartheid ended in 1990, when the new government opened the country to any African seeking asylum. “They came. People who were poor and homeless and downtrodden came by the millions, and South Africa was not equipped to manage all of these people,” he said. “Initially they built little townships of tiny houses, about 800 or 1,200 square feet, and those filled rapidly. The people didn’t have jobs. They realized they could rent out space in their little tiny yards to the people who were coming after them, and they put up lean-tos against their houses. It ends up being five or six families on a lot meant for one.” The Rev. Bruce Gardner, Hospice Compassus Chaplain in Jefferson City, MO, said it was clear there were only two classes in the country. “You either have money or you don’t,” he said. “And for those that don’t, the living conditions were horrendous. The homes that we went into kept the windows open 24/7 for cross ventilation because of tuberculosis. They cough and cough, so other people in the family are exposed to TB.” The South Africans are waging a battle against several diseases, but primarily AIDS and tuberculosis, Dr. Driss said. Expecting to see Living Hope’s hospice wards filled
St. Luke’s Hospice, a private hospice where the group sat in on an interdisciplinary team (IDT) meeting.
with AIDS patients, he was surprised and impressed by the progress the organization has made battling that disease. “One part of Living Hope is an actual hospice unit with about 20 beds,” he said. “Initially their idea was to bring in these young people dying of AIDS, and they would stay at the hospice. They went into the townships and set up L to R: Dr. Leon Driss, Marilyn Driss, Amberly Owens, Rev. Bruce programs to try and identify Gardner, Crystal Carriere, and Tymali Osteen. people with AIDS early so they could get treatment.” Living Hope’s educational efforts have Carriere said. “These were some of the most been amazingly successful, dramatically pleasant, happy people I have ever seen in decreasing the number of people in the area my life – truly grateful, very religious and who are dying of AIDS, according to Dr. faithful people.” Driss. The hospice beds set aside for patients Reading about such a situation is very with AIDS are empty, and most patients in different from standing in the middle of the hospice unit suffer from illnesses like streets filled with sewage and witnessing those found in the U.S., including cancer the challenges faced by healthcare workers. and lung disease. Osteen said she realized how much The Hospice Compassus group visited Hospice Compassus could offer the as many areas and saw as much of Living educational programs in South Africa after Hope’s work as they could, going house to spending the day with caregivers. “These house with their counterparts. workers would play the role of nurse or “The day we got there, we went to one of home health aide,” she said. “They were the little townships and were sent out with doing wound care and would wear just one the caregivers to make home visits,” recalled pair of gloves for all the patients that day.” Marilyn Driss, MSW, LCSW, Social Worker Of course, Living Hope needs dollars to do at Hospice Compassus in White Mountains, their work as well. Osteen said three workers AZ. “The first couple of places I went to had one blood pressure cuff between them. were actually homes, and were neat and They would trade it around, so each day clean; and I remember thinking to myself, the three spent in a town, only one of them ‘This isn’t so bad. This is like the Apache could check her patient’s vital signs. reservation (where she frequently works in Osteen was also struck by the feelings Arizona).’ After that we went into the little of hopelessness, especially in the children, tin sheds. It was like nothing I’ve ever seen and she said everyone seemed to recognize in my life. I’ve been a Social Worker since Chaplain Gardner and came to him for the 70s. I’ve seen a lot.” prayer. Crystal Carriere, RN Case Manager from “They were extremely spiritual. They Lafayette, LA, was struck by the attitudes were very, very focused on God,” she that flourished even in tremendous poverty. said. “When you’re down that far, there’s Despite thousands of people living in nowhere to look but up. They had nothing communities with no running water, and as but their faith, that’s all. When our many as 6,000 people sharing four toilets, the Chaplain went with us, they would pull beauty of the people shone through, she said. him off the street. They would flock to him “It’s shocking that people manage to and say, ‘Will you pray with me?’” live in such squalor and remain happy,” (Continued on page 24)
Hospice Compassus and Living Hope International Exchange Program By Paul Petrocci Senior Vice President of Operations
A trip to a tuberculosis hospital where they learned more about the TB problem in South Africa.
n 2011, after identifying similar core values and a shared common calling – “a deep awareness of the suffering of another, coupled
with the desire to relieve it” – Hospice Compassus and Living Hope of Cape Town, South Africa, joined together in an international exchange program. One element of the vision for the exchange program is for Hospice Compassus representatives to take volunteer mission trips and work side-by-side with Living Hope clinicians. The inaugural fact-finding and cultural immersion trip took place in August 2012. (See page 19.) Living Hope was founded by John Thomas, Senior Pastor of Fish Hoek Baptist Church, in 1987. Over the next 26 years the organization expanded into several Service Units:
Living Care is a 22-bed Hospice Inpatient Unit, caring for 200 people a year, and a Home Health Agency, whose caregivers make 35,000 visits annually to impoverished townships.
Living Right is an HIV/AIDS Prevention Program testing 5,200 people annually for HIV/AIDS. It also ministers to 4,400 children annually through Life Skills Educators in townships where abject poverty is a fact of life. The group walked along a river of raw sewage in the shanty town of Masi.
is an Entrepreneurship Center including Entrepreneur
Development, a Worker Readiness School, and Vocational Skills Training.
Living Grace is a Homeless Shelter and provides 5,300 meals annually. Hospice Compassus is committed to assisting Living Hope in its objectives. We believe this exchange partnership also provides an opportunity for a unique Colleague experience, appealing to the higher purpose that leads our staff to careers in hospice care. Hospice Compassus also provides increased visibility for Living Hope though our website, access to Hospice Compassus expertise, and financial support and fundraising through Colleague contributions and Company match. This year a second and possibly third group of Colleagues will have the opportunity to visit the Living Hope healthcare facility. The delegation The water supply in Masi that is used not only for washing dishes and clothes but also drinking water as well.
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will include a full interdisciplinary team – physician, registered nurse, aide, social worker, and chaplain. We look forward to continuing to learn ways in which we can be most helpful to this outstanding organization.
Amberly Owens and a patient.
“I’ve been a Social Worker since 1974, and I felt helpless,” mourned Marilyn Driss. “Their poverty was so extreme; their government was giving them nothing,” she said. “I felt like the Chaplain had so much more to offer. He could offer them prayer and comfort and eternal life, and I had nothing.” The group talked every night about how Hospice Compassus could help Living Hope and the South African people, and they’ve continued those discussions since returning home. Osteen said as she traveled through the country, all she could think was “medical, medical, medical” from a helping perspective. But after researching costs, it’s just not practical to send supplies. Instead, the focus will be on education. “Living Hope is having an impact. Going into these townships with literally hundreds of thousands of people and helping even 100 to 200 people, it’s a drop in the bucket. It’s somewhat of a hopeless kind of feeling,” Dr. Driss said. “Our consensus was that they really don’t need us going down to give actual care, because they can get that from their own community, their own volunteers. Education is where we could have the biggest impact.” Amberly Owens, executive director at Hospice Compassus in Yuma, AZ, said educating the health staff who went into
Amberly Owens, Tymali Osteen, and Crystal Carriere.
the field is probably the best way to address the poverty she saw during the trip. “I really believe that knowledge is power,” she said. “Being able to give them that knowledge to help not only themselves, but also to help take care of the person next to them, whether it be a colleague or a patient, will help them develop a seasoned staff to continue the training.” Introducing new ideas and training will be life-changing, she added. “I think that in this case, many people have a limited understanding of what they’re actually doing, so additional information or an outside perspective could be beneficial to them,” Owens said. Osteen said another group is being selected to go to South Africa, and she’s hoping to return. “We’re trying to put something together to educate these good people,” she said. “We’ve talked about going for two or three weeks, and then start going every few months.” As they put together a plan to offer help, all who went on the trip are struck by how very blessed they are with the lives they lead in the United States. “When I got home, I looked at my house, and it was the size of I don’t know how many shanties put together,” Marilyn Driss recalled. “I looked around, and I have too much stuff. The materialism of my
life struck me when I got home. It’s real interesting this past holiday season, my husband and I didn’t do much for gifts. I usually have a long list—this year I needed slippers. It really struck me how much we have here. We take it for granted.” “Oh, it gave me a totally different perspective of my life,” agreed Osteen. “I came back and really value where I live, the fact that I live in the United States, the fact that I work for Hospice Compassus and I have a great job, the fact that my family is all healthy and we have a nice home. We have running water, my kids are very well taken care of, we have access to good healthcare. “To be honest with you, when I got back, I had a really difficult time the first week I was home,” she added. “I was an emotional wreck. I think it was just the culture shock of being out of the country and seeing extreme poverty for the first time.” “I had my eyes opened to a lot of things,” Gardner said. “When we think we have it bad – a bad day here is a good day over there.” What the South African people she met did have, Owens said, was hope. “A lot of what they have left is hope – hope for something better, hope for help,” she said. “It was just amazing. They have hope and faith.”
A 501(c)3 non-profit organization, Living Hope divides its work into four categories – Living Care, Living Grace, Living Right and Living Way. (See page 21 for more in-depth information.) Hospice Compassus Colleagues can support Living Hope financially with an automatic pay deduction. For more information about Living Hope, including how others can contribute, please visit www.livinghope.co.za/.
How Grief Can Change Your World By Joanna McDowell, MSW, LCSW Bereavement Coordinator – Columbia, Missouri
earing the word “change” can elicit excitement and anticipation or dread and anxiety. When we deliberately make a change and feel some sense of purpose and control, change can be refreshing and exhilarating. However, when change comes about as a result of death or other significant loss, we may feel out of control, in uncharted territory. Working through loss requires the patience to give ourselves time to incorporate changes into our lives. I frequently find myself saying, “Be gentle with yourself!” Bereaved persons often expect to function the same as always, even in midst of a tremendous loss. To help them conceptualize their loss and its effect on daily life, we sometimes “break a leg.” If I were to break my leg today and end up with a cast and crutches, I would have to modify some of my routines. I would be unable to carry a laundry basket through the house. I would have to allow more time to get anywhere. Even showering would have to be modified to keep the cast from getting wet. A broken leg requires accommodation. It’s acceptable to modify our way of doing things or to change our expectations of what we are capable of doing while we work on healing. It seems more difficult to give ourselves permission to slow down or let something go when our break is internal. The reality is that after the loss of a loved one, life will never be exactly the same. But healing can begin so that the painful days are fewer and the good days are more frequent. So what can we do to take care of ourselves during this time of loss and change? First, acknowledge that what is helpful to one person may not be to another. For example, several people I have met with recently have shared how much they are looking forward to getting out in their gardens or flower beds this spring. For someone else who may not like to be out in the sun or who doesn’t have a green thumb, such a task may actually produce anxiety. These activities are not going to magically take away our grief. But taking care of ourselves and discovering or rediscovering things that we enjoy or that bring us peace are important components of healing. And please remember, “Be gentle with yourself.”
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ACTIVITY IDEAS: exercising
a gardening/flowers eating at least one nutritious meal a day spending time with family TR AVELING
receiving a massage attending cultural events volunteering reading for enjoyment or inspiration
H spending time with friends attending a grief support group
listening to music to match your mood
pr ay er participating in religious ceremonies
planning something to look forward to
seeing a counselor journaling T getting out in nature
making a memory box listening to relaxation tapes | 25
Love & Loss
Treasured Letters By Sharon Blackwell Bereavement Coordinator Princeton, West Virginia
o everything there is a season….” Ecclesiastes 3:1 is a powerful verse focusing on time and events in our lives. I recently met a lady who will hold certain dates forever in her heart as much more than moments in time. The power of her love repeatedly amazed me as, together, we embarked on one of life’s hardest journeys – the journey of grief. My new friend, Ennis, recalls the first time she met Robert in the summer of 1948. She was 15 years old, and Robert was 21. She was accompanying her aunt and uncle on a picnic when they met Robert’s family on the road and stopped to visit. Robert made a point of talking to Ennis. Later the families enjoyed watermelon together, and the young couple sneaked off to “sit under the apple tree.” Robert stole his first kiss. Ennis was struck with love at first sight. Robert soon returned to his home in the Washington, D.C., area. They would write letters, and he would visit as often as possible. When he visited in March 1949, Ennis received an engagement ring, and they were married in July. They traveled to Pearisburg, VA to get married. Though barely 16, Ennis did not want to lie about her age when they sought the marriage license. So she wrote “21” on a slip of paper and placed it in her shoe. When asked if she were over 21, she said, “I assure you, I’m standing here today over 21.” In the early years of their marriage, Robert had to travel to obtain work. Ennis remembers their faithfully writing to each other while he was away.
When Robert returned home to develop his own businesses, Ennis steadfastly supported him while raising three daughters. During the last 15 years of their career, they worked side by side. Just as Ennis will never forget their first date, she will forever remember their last one. Robert was 83 when he decided to end his treatments. They had put off contacting
through the grief can determine how to defeat this monster. The bereaved must learn how to cope. As part of that process, I often encourage bereaved families to find a way to keep their loved ones with them as they continue to walk on. I arrived at her home one day to find Ennis sitting at the kitchen table with her daughter, who was working away on
As part of the grieving process, finding ways to keep the loved one close is important for bereaved families. Reading letters sent during courtship and marriage can bring particular comfort. hospice because they were unsure what would be allowed; but after clarification from our staff, they were glad to receive our support. The day before Robert died, Ennis shared through tears, she had told him that she would be all right. He could go to be with the Lord. His response was “All right, let’s go.” And so his journey ended. When I met Ennis, she described her heart as being broken into “a million-billion pieces.” As Bereavement Coordinator, I know the rawness and intensity of grief’s pain can feel like an overpowering monster that will overtake life and cause the sun never again to shine. It is this monster the grieving one must battle – day after day, week after week, month after month. The truth is that only the person working
a computer. Abundant piles of rubberbanded letters were scattered across the table. They were Robert and Ennis’ “love letters.” Their daughter had agreed to type and print the fragile letters and place them in binders, so Ennis could read and reread them. The letters shared during their courtship and early marriage bring particular comfort today. I have heard it said that it is better to have loved and lost than never to have loved at all, and I believe Ennis would agree. Her life has been enriched with love and romance spanning the test of time and continuing still. Walking on has not been and never will be easy; however, she knows that Robert would want her to be happy and to make the most of every day. Love letters help.
What to Do when Faith Ruptures
“Faith is a bird that feels dawn breaking and sings while it is still dark.” - Rabindranath Tagore
A Bereavement Coordinator offers the perspective of her own faith as a resource in the healing process. By Gail Husted Bereavement Coordinator – Branson/Monett, Missouri
his past week the topic of our grief support group was “A Rupture in Faith.” As we began our discussion, one member sat quietly sobbing in the corner. I watched as the tears flowed down her cheeks before she opened up. “I feel abandoned, as if God has left me.” “I can’t get past this feeling even though I have always been a person of faith.” “I don’t know what is wrong with me. I feel so alone.” As the group shared around the table, each person expressed having similar feelings. We began to discuss just what faith is – a confidence or trust in a person or thing that is not based on proof. We all experience moments when we question our faith and God’s plan. Then another member spoke. “I feel like I’m stuck under a rock.” I sat still for a moment, digesting what she said. ‘What you need to remember is that God is under that rock with you,” I told her. His word promises that He is with us always, not sometimes. We may all experience a “rupture in faith,” especially when we are thrown into grief. To question our beliefs during grief is not unusual. Jesus on the Mount of Olives questioned his Father and begged, “Take this cup from me; yet not my will, but yours
Lord, I want to be Your masterpiece, Unique from all the rest. You see in me what I can be, Your vision is the best. Create in me a pure clean heart To serve as a blank canvas. For You to paint Your love upon, Brushed on with joy and gladness. Vol. 5 Issue 1
be done.” He cried out to his Father, “My God, my God, why have you forsaken me?” Why do we beat up ourselves when we have those same human feelings, questions, and frustrations? God understands our innermost thoughts and loves us unconditionally, even during our “ruptures in faith.” We feel abandoned, yet God never moved away. We may not be able to see Him through our tears, or hear Him over the external noises of grief; we may not be able to feel His love because we have isolated our hearts out of fear that we will be hurt again. But God has never left us; He is waiting patiently for our “dawn” to break and return our faith. How can dawn break and faith be restored? Here are a few practical ways: • We have the guidebook – the Bible. Learn from the great characters about their “ruptures of faith.” Read the passages about Abraham, David, Job, Moses, Joshua, Esther, Mary, Jesus, and so many other excellent examples of faith. • Surround yourself with people of faith so that they can help you along your journey to restoration. Be willing to ask for help and encourage others to pray for you.
• Keep positive messages in your “selftalk” vocabulary – post them on your bathroom mirror, rearview car mirror, use them as a screensaver on your computer and telephone. Remind yourself daily that there is someone who understands your every need – God. • Spend time in nature and listening to your inner voice. God has surrounded us with an abundance of beauty and so many opportunities to restore our souls. • Pray without ceasing – tell God your feelings, cry out to Him in your anguish, and He will heal your soul. Ask God to restore the faith of your youth, and be willing to believe that it will happen. Finally, be gentle with yourself. God never changes. He never fails. He never goes back on his promises. He has promised: “Never will I leave you; never will I forsake you” (Hebrews 13:5). Hold fast to His promises. When you feel that God has surely forgotten you, and you experience a rupture in your faith – remember, God never moved. You did.
Volunteer – Branson, Missouri
Then You add, with tender touch, A splash of unmerited grace. Which does away with dullness; Flaws are gone, without a trace.
Your skillful hands draw out the beauty That’s been hidden for so long. As You add the vibrant color That makes a joyful song.
You’re the Master Artist. I am yielded in Your hands. I want to be Your masterpiece And fulfill Your master plan.
By Missy Wolf
Lessons from the Dying Bereavement Coordinator Learns Wisdom from her Patients
By Morgan Chilson Contributing Writer
“I “Each and every one of us is in our own schoolhouse. There’s something that we’re learning along our life’s journey, and grief is a part of it.” – Sarita Fields Bereavement Coordinator Columbia/Tullahoma, Tennessee
t was kind of by accident that I wound up in hospice. But I tell you what, now that I’m here, I’ve learned a lot about life, about living.” Bereavement Coordinator Sarita Fields, who works in the Columbia and Tullahoma, TN, offices, said she was nervous when she first started talking to hospice patients. To get the conversation going, she began asking a variation on the question, “What would you leave as a legacy?” The answers got her through those first challenging experiences as she adapted to offering end-of-life care – and they also changed her life. “One of the fellas told me that the stuff I thought was important is not that important. He said if you can learn how to let go of things while you’re here, you’ll enjoy life a little bit more,” Fields said. It’s not surprising that absorbing wisdom from her patients is part of Fields’ life; when she works with patients and families, she helps them to focus on learning from what is happening. “Each and every one of us is in our own schoolhouse,” she said. “There’s something that we’re learning along our life’s journey, and grieving is a part of it. It’s a skill that we must all develop. We can dance around it if we want to; but ultimately it remains, and it shows up when we least expect it. Growing pains – they’re called that for a reason. It’s not an easy task, but we can do it.”
The paths people take as they deal with life and death are individual, varying with every single patient and family member with whom bereavement counselors work. “We will be ready to impart to others the wisdom we have learned,” she said. “And that’s how the cycle goes. Parents are going to die. Spouses are going to die. Children are going to die, and parents are learning. Everybody’s learning because they can pass on the information they get to the next parent that’s losing their child.” “You survive it,” Fields said. “You gain wisdom from it. So we need to be open to our personal schoolhouse, no matter how difficult the lessons in it.” Many of the lessons people learn as their loved ones die are about themselves. One woman Fields worked with learned that she had a need to always be right, something that became apparent as she dealt with her father’s death. Other people find that they were so integrated with the person who was dying that they don’t know how to make decisions on their own. One widow said her vacation was always
his vacation, and she didn’t even know how to plan one by herself, Fields said. “There are so many different formulas by which people are connected. The formulas are their own design. They present those designs to me and we work together to help them find a new way of coping. I love to see the light bulbs come on.” One of the most basic values that comes up is the value that people place on life. “We wind up using a lot of our energy on things like that, burning up a lot of energy on who should live and who should die,” Fields said. “People say, ‘I’m here and my child is gone.’ They’re re-evaluating the values they once had about who lives and who dies.” Fields herself faced feelings that she was unaware were hidden inside as her mother died. Her mother had been abused and chose to stay in the relationship. But as her mother died in hospice, Fields found herself angry because her stepfather lived and her mother was dying. “I just didn’t think that was right,” she said. “There was a lot of work that I was doing, and I was appreciative to have these buttons pushed. The more I get cleaned up in my own internal world, the more I can help someone else. I was grateful that my mother’s experience was teaching me something, and I was learning something about myself and areas in my own life that I wanted to change.” After starting her hospice service with a question, Fields has continued to ask questions of patients and family members. It’s amazing how clarifying the answers can be. “The patients may linger, hang on in pain, because of a fear,” she said, recalling one patient in particular. “He was afraid his wife wasn’t going to be able to pay the bills or buy the groceries. I asked, ‘Do you think she’s smart enough to take care of herself?’ He said, ‘Yeah.’ Sometimes a good question helps to give a person pause, to make a decision about something and evaluate something that they were on automatic pilot about. It is that very thing that helps them to let go and be okay with transitioning.” Questions, she said, start the energy burning within people. “It gives them the power.”
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When Words Fail By Linda Tillery Wife and Mother of Former Patients, and Volunteer Columbia, Tennessee
e meet on Tuesday night at Hospice Compassus in Columbia, TN. Marked in red on my calendar, it’s an appointment I look forward to, like meeting with family or friends. It is my lifeline, my anchor, my support. We are all different; we are all the same. Most of us say the same things in different words. We have all suffered tremendous, permanent loss. We are hurting, and we are searching for what to do next, where to turn, how to act, now that we face life without someone who was not supposed to leave. Sometimes, loss is sudden and unexpected. Sometimes, we sit and watch as our loved ones die a day at a time. We know we are losing them even as we struggle to hold on. Some who come to this group have read and studied about death and dying, about grieving and mourning. Some are ignorant of the “steps through the journey.” Some never see it as a journey, but as a final destination. We are all at various times angry, bitter, pitiful, resentful, hopeful, coping the best way we can. We are old and young, healthy and sick. We are searching for ourselves in the ashes of shattered lives. And here they are. The Chaplain. The Counselors. The special people who listen to us, week after week. They look at us with compassion in their eyes and love in their faces. They must at times want to shake us, wake us up, as they see us flounder through the maze. They know that we will find our way through this. They know that there is a light at the end of our tunnel. They know the path we are on will lead us to a more peaceful place. They have seen it time and time again. Hospice has been there when we had to let our loved ones go. They held our hands, stood by our sides, and gave us comfort. They were there to help us find our way through the long process of grieving, mourning, and learning that truly, “life goes on.” But it will never be the same. They respect our loss. They know. They care. I know of no other place like this, no other program. It is safe here. Nothing we say is the wrong thing. No emotion we feel is the wrong one. We move at our own pace, and no one has a stopwatch or a report card. We can laugh, cry, or just sit and say nothing. New ones come, old ones leave to begin life again, to find the “new normal” that will take them forward. What would we do without hospice? What would I do without hospice? It gives me comfort and strength and courage and a desire to find where I belong, now that my life has been shaken, sifted, and scattered. “Thank you” seems so inadequate, but with all my heart, I truly do thank you.
The Most Beautiful Cake By Gaye Lisby Caregiver
came into Loradean’s life late. She didn’t want me there; but her children, exhausted from their constant duties as caregivers, had turned to hospice, and then to me. I became a full-time, live-in caregiver after the July holiday weekend. Loradean’s diagnosis was congestive heart failure, and the fact that she was nearing her ninetythird birthday gave us a pretty clear indication that we were moving her from the nursing home back to her own home in order to die in peace. Loradean’s children, her Hospice Nurse, her Aide, and I quickly created a safe, comfortable, and dignified routine for this woman who had spent most of her life being in charge. She soon grew to appreciate me. While drinking our morning coffee and listening to the twittering birds, we “porch sat” and watched the neighbors go off to work. She shuffled around in her wheelchair and did chores, sorting and organizing dresser drawers or putting away the silverware. One morning she insisted on mopping, so I arranged her comfortably in her wheelchair and gave her the Swiffer. In the afternoons she enjoyed her favorite television shows. In the evenings we read from our Kindles and talked about the old days and her fear of dying. “It’s not that I’m concerned about eternity,” she confided. “It’s just that I wonder if dying will hurt. Will I know that it is happening? Will I feel it?” I patted her blue-veined hand and assured her that she would be able to make that journey in peace and without pain. “That’s one reason I’m here,” I said, “and so that you won’t be alone.”
On August 29th I woke Loradean by singing “Happy Birthday” and calling her the Birthday Queen. Midday her three children and their spouses poured into the house with an enormous German chocolate cake and ice cream – her favorite! We sang and enjoyed the birthday treats. The children told funny stories about their growing up. Loradean clapped her hands in delight, and we laughed until tears rolled down our faces. Two weeks later I was doing household chores when I overheard my patient mumbling. I went to her bedside. “Loradean, what do you need?” Her eyes were closed. She held her hands up before her as if she were receiving something. She mumbled again and finally said, “Take this cake.” “Do you have a cake, Loradean?” I asked. “Yes,” she said with her eyes still closed. “Will you take it to the kitchen?” A childlike smile spread across her face. I made motions as if I were taking the offered cake and walked out the bedroom door and right back to her bedside.
Her face was alight with the most peaceful smile. She opened her eyes and looked sweetly at me, “Isn’t that the most beautiful cake? White cake with white icing!” She closed her eyes again, folded her hands, and smiled. Puzzled, I said, “Loradean, where did you get that beautiful cake?” “A tall, white man in white clothes gave it to me. Isn’t it the most beautiful cake?” “It’s lovely,” I said. “Would you like a piece for lunch?” Loradean licked her lips and grinned. “Oh, yes, I would!” Her eyes were shining. “Loradean, do you think an angel brought you that cake?” She chuckled, “No, a tall, white man in white clothes brought me that cake. Isn’t it a beautiful cake?” Her eyelids began to droop and soon she was sound asleep. I walked into the kitchen, deep in thought, and called her daughter, who was scheduled to cover that day while I took a break. I told her what had just happened. “Will you stop by the store and buy a piece of white cake with white icing?” “I sure will,” she said, “but don’t you think it’s funny, because Mom’s favorite has always been German chocolate cake?” “Today it will be white cake with white icing,” I smiled. Loradean’s daughter brought a piece of white cake with white icing and fed her mother six or seven bites before she fell asleep again. Within 48 hours, my patient had slipped into eternity, where she very likely was met by the tall man in white clothing who had delivered her incomparable cake.
The Blessing of Hands Bless the works of your hands. Bless these hands that have touched life. Bless these hands that have nurtured creativity. Bless these hands that have held pain.
The Blessing of Hands By Daniel Riggs MSW Practicum Student - Springfield, Missouri
began my career in social work at the Division of Youth Services in Missouri, and that’s also where I started combining my hobby of photography with work. First I took pictures at the annual GED graduation; later, while serving at a residential facility, I photographed the youth participating in adventure-based counseling, where they engaged in goal-oriented outdoor activities. The pictures helped the young people celebrate their accomplishments, and their families enjoyed viewing them in electronic frames or on big-screen TV when they visited. When the time came to finish the educational requirements for my Master’s degree, I chose Hospice Compassus as my practicum site. When I arrived I was eager to find ways to incorporate my photography experience in a way that would benefit the patients and families we serve. I hope to inspire others to bring their individual and diverse “outside” skills and experiences to work with them, enabling us to use them all to provide the best possible care to our patients. We came up with the idea to photograph the patients’ hands as a lasting and cherished symbol of who they were. Our loved one’s
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hands often represent a never-ending stream of memories to us, each pair unique to the one we care so much about. The memory of those hands will often stay with us long after the dear person has passed on. With these ideas in mind, I started a new project here at Hospice Compassus in Springfield, MO. This project will offer a lasting symbol to bereaved families by combining the photograph of hands with a poem, “The Blessing of Hands.” The poem is displayed in a photo card next to a picture of the hands, which also incorporates something about the individual that is meaningful to the family. I recently got to work with my first patient on this project. It provided a lovely opportunity to build rapport as we worked together to come up with an Elvis theme for the photo. The family was open and appreciative, and it was a great experience that encouraged me to provide this service to any patient interested in the photo card. My hope is that this project will serve as an inspiration for other students and Colleagues who are looking for new ways of reaching out to our patients and families with something new and exciting.
Bless these hands that have embraced with love. Bless these hands that have tended gardens. Bless these hands that have closed in anger. Bless these hands that have planted new seeds. Bless these hands that have harvested ripe fields.
Bless these hands that have cleansed, washed, mopped, scrubbed. Bless these hands that have become knotty with age.
Bless these hands that are wrinkled and scarred from serving others and our country. Bless these hands that have reached out and been received. Bless these hands that hold the promise of the future.
Bless these hands that love and are loved in return.
The Importance of Goodbye Lessons I learned from my father
y father was the life of the party. A brilliant and outgoing man, he possessed a set of gifts rarely found in a research professor. When polio paralyzed him from the waist down at age 16, his parents saw to it that he was rehabilitated; he walked on crutches with leg braces for more than 50 years, and used a wheelchair for the last seven years of his life. His personality was so warm and his presence so affirming that many were known to have completely missed the fact that he was physically challenged. Upon meeting him a second or third time, they would ask when he had broken his leg and wish him well in his recovery. He and my mother were an excellent match. He loved to go to parties and she loves to host them. Active in church and their community, they made friends easily and compiled a long Christmas card list that spanned the globe—a result of immigrating from Australia and Dad’s traveling the world as an internationally known scientist. They were known for their great love of people—often offering prayer or bringing homemade soup when a friend was in need. When Dad became ill and was hospitalized, their closest friends began visiting and offering support and care. When he was diagnosed a week later with end-stage cancer and referred to hospice, the visits greatly increased. We estimate about 90 people came to see Dad in his last
By Carolyn Roper-Fowlkes Bereavement Coordinator Peoria/Bloomington, Illinois
week. The staff at the hospice were amazed by all the traffic to see “Dr. Bob.” Dad’s mind was sharp right up to the last. Though the pain meds slurred his speech, he was still cracking jokes and trying to contribute to the conversation when friends came around to say their goodbyes. He wanted so much to stay engaged with us that the night nurse finally came in and closed his eyes for him, telling him that we all needed to get some rest. Four or five hours later, his breathing shifted into the pattern that indicated death was imminent. Friends were still coming in the hours before he died, though at that point he wasn’t able to engage. He squeezed my hand tight just minutes before he died. Mom, a church friend, and I stood at his bedside while the nurse confirmed what we could already see. Dad was gone. Dad was my first teacher. Even in those moments of his dying, and in the 12 months he has been gone, he still teaches me. His hospice experience taught me many lessons about the importance of good goodbyes. 1. “God be with you.” Dad was a man of
deep faith and practice. In his dying and death, he showed us the true meaning of
“goodbye”— God be with you. It’s difficult to name all the ways, but we recognized that faith was at the core of how he lived and how he died. 2. Give your best to your relationships.
Dad didn’t know a stranger, and the friends he gathered around the world could be assured that he cared for them and encouraged them to fulfill their dreams. He didn’t try to get others to fulfill his dreams, but rather was excited for the possibilities that lay before each individual. As he lay dying, it was the relationships and not the material things that were comforting. He gave us as much of himself as he could, right up to the end. He knew it broke our hearts to see him go, and so he slipped away the moment I stepped out of the room and he was alone. 3. We need to speak our love as much as we need to hear that we are loved.
This was perhaps the most important part of our time with hospice. Being open with ourselves and others that Dad was dying gave us and the many friends permission— the open door—to come and tell Dad how much he meant to each of us. Some spoke in clear words, others spoke in presence, but all made Dad feel as special as he had made us feel. He received the great peace and joy that come from knowing that others have felt and appreciated your love. It is, I believe, what we are made for. Saying and hearing the words “I love you”
is the greatest gift we can give each other, as those words, spoken truthfully, give the greatest joy and peace. 4. Endings are just as important as beginnings.
We all know how much joy a new baby brings to a family, or how good it feels to start a new job that we’re excited about, or to fall in love; but it’s just as important—perhaps more so—to have a good ending. Acknowledging what has come from a relationship, having an open conversation that counts the good and the bad, allows us to say “I love you,” “I’m sorry,” “I forgive you,” and “thank you,” while we can still receive the same from our loved one. By tying up the loose ends, the result of these conversations can be a greater peace for the dying and the bereaved. Each of us had a conversation like this in Dad’s last few days.
Healing through Art
5. Death is a natural part of life. Dad had
things he still wanted to do and plans for making them happen, but it was not to be. Dad was also a little bit angry that he didn’t get to go out in quite the way he had imagined. But sometime in his last few days, he made peace with that. He knew that everyone dies, and he was sure that what was to come would be a relief to the pain, illness, and decline he was seeing in himself. Though we all miss him, he knew we would all be okay and would reunite at some point in the future. 6. A good goodbye is both life-giving and peace-giving. Taking the time to acknowledge
By Sharon Cates Volunteer – Springfield, Missouri
did my first collage on a retreat in California. My husband was ill and recovering from surgery. He urged me to go and
said he would be released from the surgeon when I returned, and we would enjoy summer. That was not meant to be. When I look back on that collage, I realize that I knew how ill he really was. My images said so even when my words didn’t. For me, doing a collage is like coloring outside the lines. When I shortchange the conscious mind and go straight to not thinking so much, that brings up hidden wishes or just
the imminence of death and to have the important conversations that clear the air and soothe the soul, we can all move forward with greater peace and freedom. I believe that Dad rests in peace and has joy in the hereafter because he had the courage to face us and death openly and honestly.
things I am attracted to. When I “began again,” I did not
7. Goodbye doesn’t mean forgetting. In the
in Peace Valley, Canada. I biked there in 2007, and when I
year since Dad died, he has continued to show up in my life. Sometimes I see him in my dreams. Sometimes I encounter something unexpected that reminds me of him. Though his physical body is no longer in my life, something of his spirit remains. The more I look for him, the more I see his mark in my life. I hear his wisdom. I see how his personality comes through in my siblings and my children. I notice how my children resemble him. He is still part of my life, even if I can’t call him on the phone or hold his hand. We remember and tell the stories, and Dad lives on.
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know what to do. I asked myself, “If I could do anything I wanted to do, what would that look like?” After his death, I started doing a collage every month. When I look back on them now, I can see that some of the things in my collages were actually happening. In 2003, I did a collage that included an image of the Prince of Wales Hotel arrived at the lobby, the view I saw in front of me was of the lake I had included in my first collage. When I was reviewing the collages for this article, I realized I had done “the doors of Ireland” on a collage in 2007, and I was there looking at them in person when I biked through Ireland in 2012. These are just the obvious results. There are many smaller and more personal ones that only I understand. For me this has been healing through art with no pressure to create a masterpiece. I was a wife, mother, businesswoman, artist, and homemaker. Today I am a single person discovering who I am and what I would enjoy. It is an ongoing journey.
Accumulated Grief and Healing Rituals
By Deborah Andrews, LMSW, CT
Bereavement Coordinator – Springfield, Missouri
n the clinical world of hospice and palliative care, interdisciplinary team members find their work highly rewarding, more of a “calling” than a job. When asked what we do, the ultimate conversation stopper is to say, “I’m a Hospice Nurse (or Social Worker or Aide).” Hearers invariably respond, “That must be so depressing! How can you do that every day?” We all answer by listing the wonderful aspects of our work: helping patients to meet their goals before death, meeting lovely people from all walks of life, seeing the results of our hard work as symptoms subside, finding resources for patients and families, and sitting at a bedside saying a prayer. We tell about our calling. In a typical day, patients die, new patients are admitted, a crisis develops, a caseload is changed, a funeral is scheduled, a volunteer is assigned, and the cycle goes on week after week. And while our jobs are fulfilling, our hearts are
dealing with accumulated grief and stress. Hospice staff cope with death every day, and we have the skills to handle our work professionally. Still, it’s easy to fall into the fast pace of schedules and paperwork, not taking the time to pause and reflect on the people we’ve met, people who have made a lasting impression on our lives. As Bereavement Coordinator, I provide care to those who were caregivers of our deceased patients; and I believe providing care to our staff is just as important. In Springfield, MO, we introduced the concept of a “time to pause,” a ritual during the team meeting when developing the Bereavement Plan of Care. The team embraced the idea and decided to add a ribbon to a grapevine wreath for each patient that had died the previous week, displaying the patient’s name and date of death. The staff were encouraged to share memories of the patient and the family, creating an opportunity for team members to support one another in their losses. As ribbons were added over the coming months, people
began to comment on how this visual reminder affirmed their work and addressed their need to grieve. Other teams decided to develop their own rituals as a “time to pause.” Like family members, staff members handle their grief and stress in individual ways. So while everyone may not participate, it’s important to provide the opportunity to acknowledge our workrelated losses. We’ve expanded our team rituals to include the non-clinical staff as well, since everyone has some contact with our patients and families. Last fall we decided to have a short memorial “time to pause.” A volunteer painted a bare tree on our conference room wall. At every staff meeting we say the name of each patient who died the previous month, and his or her leaf is added to the tree. All of us are amazed to see how the tree fills up each quarter, and we share memories, stories, tears, and laughter. Tears come to our hospice family, too, when a staff member experiences a family death. We recognize the Colleague’s personal loss by the giving of a “grief pin” and assurance of support from our work community. In the past we acknowledged our grief through the public mourning of wearing black, causing people to pause, just as these pins do today Ritual – a simple act given intention and meaning. The small actions we have created have led to meaningful rituals that help our staff cope, heal, and continue to provide excellent care, as we all remember and take “time to pause.”
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