A Publication of Hospice Compassus
Finding Comfort in
Love, Loss & Grieving
Vol. 3 â€˘ No. 1
ospice is notable within the healthcare world for having both the responsibility and the opportunity to address our patients’ full range of needs. Once a terminally ill person elects the benefit, the hospice care team, in conjunction with the patient and family, immediately creates and implements a plan of care in keeping with the patient’s and family’s desires. The purpose of this plan is to alleviate pain and manage the patient’s physical comfort, to aid in the patient’s daily living activities, to address and accommodate the patient’s immediate environment, to help the patient and family cope with their psycho-social circumstances, and to minister to their spiritual concerns. Providing such global attention within the context of one benefit is a rare and special occurrence today. As broad as this response is, though, hospice does not stop there—we also extend support and comfort to the loved ones after the patient has died. We’d love to hear what you This assistance comes in the form of personal contact between the survithink about our company and vors and hospice care specialists such as social workers, chaplains, volunteers, and bereavement coordinators. These professionals provide, among our colleagues. Please contact other things, opportunities for structured group interactions among those us on our website at grieving their losses. As assuredly as our modern medicines can minimize www.hospicecompassus.com the physical pain of the terminally ill, these efforts on the part of the skillful hospice team members can ease the emotional suffering of the survivors. It is natural that those experiencing great personal loss may be reluctant to explore the depths of that loss with strangers, but patients’ loved ones do find considerable solace and healing through this support from hospice. The emotional suffering of bereavement is as inevitable as death itself; but the form it takes, the reaction it triggers, and the duration of its effects defy precise prediction. To cope with this pain, hospice staff must acquire and hone the skills of grief management for our own solace and to support others who have this unwelcome and stressful circumstance thrust upon them. Direct experience, thoughtful study and consideration, and genuine empathy are the keys to fruitful passage through the grieving process. Classic reference materials and subject reviews, such as Elisabeth Kübler-Ross’ and David Kessler’s On Grief and Grieving, are excellent resources for us and for supporting the bereaved. The continual sharing of anecdotes and the intimate experiences of others assists us in immeasurable ways as well. Many of the articles and stories included in this issue of Everyday Compassion touch upon the challenges and accomplishments of grief and grief support. I hope they provide insight. I hope they inspire us all to continue sharing our meaningful episodes in this forum. And I hope they also contribute in some small measure to easing for all of us the progress through one of life’s most difficult passages.
Jim Deal Chief Executive Officer
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the shared experience
The Last Days of Extraordinary Lives . . . . . . . . . . . . . 6 There Is Life After Loss . . . . . . . . . . . . . . . . . . . . . . . . 8 A Magical Combination: Dreams and Chocolate . . . 10 A Tribute . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Dreams Do Come True . . . . . . . . . . . . . . . . . . . . . . . . 18 One Year . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Dream Comes True . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
lessons from the field A Day in the Life of a Hospice Nurse . . . . . . . . . . . . 12 A Nurse’s Story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Free as a Butterfly . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 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.
PUBLISHER: Hospice Compassus EDITOR: Brooke Legnon, Marketing Director ASSISTANT EDITOR: Jan Shaffer, Senior Human Resources Consultant CONTRIBUTORS: Monica White, JoAnn Henningsen, Peter Franks, Jacki McCormick, S. Craig Greer, Cassandra Hall, Melanie Upshaw, Wally Jones, Ginger Harrison, Lari LaBello, Deborah Musick, Peggy Brown, Vicki Brown, Teresa Severs, Julia Logan-Myers, Mary Austin, Natalie Fieleke, Kimberly Hodges, Linda Tillery, Dale Willis, Deborah Andrews, Lynn Dozier, Jan Burback, Jessica Wiley, Kim Bodenmiller, Edie Rimas CREATIVE: Tallgrass Studios Copyright © 2011 Hospice Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the prior written consent of Hospice Compassus.
hospice life Living With Hospice . . . . . . . . . . . . . . . . . . . . . . . . . Grieving In Your Own Way . . . . . . . . . . . . . . . . . . . . Better Communication, Better Pain Management . . . Hospice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Hospice Quiz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
19 20 21 22 23
care-team spotlight Giving Back . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
in the news Bucket List . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
Sparking Smiles D
uring a recent dentist appointment, Dr. Janelle Yang Horsley asked if I enjoyed scrapbooking and crafts. I replied that I did but had not had much time lately to be creative. Janelle enlightened me about her greeting card program called Spark A Smile. She began having greeting card parties over a year ago in the lobby of her office to “spark a smile” from each card recipient. She told me they make cards for private non-profit organizations, senior centers, teen moms, and hospitals in our community. Instantly I had an idea! What a great way to honor our patients’ caregivers— to “spark a smile” by giving each of them a card during National Hospice Month in November! I ran the idea by our Executive Director and my fellow Social Worker, and both agreed that our caregivers would benefit from our creativity. Perhaps a greeting card doesn’t seem like much, but it would show those providing the day-to-day nurturing that we understand how challenging yet rewarding it is to care for someone who is dying. Their caregivers provide the love and comfort our hospice patients need during a very difficult time. Two of my co-workers and I were guests at Spark A Smile’s first birthday party and card-making night. One of the crafters had made homemade carrot cake cupcakes for all of us to enjoy while we made our cards. In attendance were card crafters of all ages, and everyone had a great time creating cards in bright colors filled with encouraging words. Over the past year, Spark A Smile has donated 1,036 greeting cards and 1,036 smiles! A smile is a facial expression formed by turning up the corners of your mouth, usually displaying happiness. A hospice caregiver is someone who has principal responsibility for caring for a dependent person with a terminal illness. What better way to show our gratitude than to play a role in placing a smile on the faces of our wonderful caregivers? – Monica White, MSW, Bereavement Coordinator Casa Grande, Arizona Above: The finished products of our caregiver cards for National Hospice Month last November. Left: Casa Grande colleagues Kim Andress, Social Worker, and Sandra Schanilec, Team Coordinator, work on some cards.
A Heartfelt Thank You Dear Hospice Team of Lakeside, Arizona: It is just three months since my husband, John, passed away. He was privileged to be with Hospice Compassus for six days. Words cannot express what Hospice meant to John, my children, and me. We arrived home from the hospital to be greeted by members of the Hospice team. From the initial interview until John passed, Hospice Compassus was amazing. The care and kindness extended to our 2
family during John’s last days and through several long nights was a testimony to the dedication and love your Hospice team gives to others each and every day. While our family only met and interacted with a few members of the Hospice team, we are aware that many hands are needed to do your work. We thank all of you. We are especially thankful for our nurses, Terri and Jeanne, and the contact I have had with Kevin since John’s passing. Thank you, Hospice Compassus, for making our life end journey with John so seamless. Our family was so blessed to be at John’s side as he took his last breath.
Our Hospice nurses helped us in every way possible to give John a peaceful and comfortable death. Somehow a simple letter doesn’t do justice for the incredible experience our family shared with John in his last days. We will never forget how fortunate we were to have Hospice Compassus as our Guardian Angels at John’s life end. Thank you from the bottom of our hearts. May God bless and continue to give you strength to minister to the needs of your clients and their families as you go forth. Kind regards, JoAnn Henningsen everyday COMPASSION
I’m sorry you must tolerate me
I’m sorry I drive you crazy
Coordinator, Firefighter, and
I know you’d rather throw me out
Sharon Blackwell, Bereavement
But instead you just yell and shout
I’m sorry for being such a pain
a treat tray to the
I’m sorry for the past
Welch, WV, fire
I’m sorry that I’m not normal
I’m sorry to be so informal I’m sorry I don’t ‘give respect’ I’m sorry I’m not always correct I’m sorry that I push your buttons I’m sorry I’m always doing nothing I’m sorry for giving you 12 years of grief I’m sorry for not being brief I’m sorry that I make you mad But I’m not sorry you’re my dad
– Peter Franks, age 17 Peter’s father died at home in Yuma, Arizona, December 2009 This poem was written in January 2010
Vol. 3 • No. 1
Our 9/11 Gift of Appreciation for the Emergency Responders
t was a defining moment in all of our lives. Everyone remembers where they were and what they were doing when they learned of the terrorist attack on 9/11. The shocking news would rock our world and shatter the American dream of our country’s security. Our lives would never be the same again. On this day terror reigned, as it would seem. On this day innocent lives were stolen by the hands of terrorists. And it was on this day we decided that we wouldn’t let this inhumanity break us. Our nation rallied and we came together in a way that perhaps we never had before. We suppor ted each other and were determined to save as many lives as possible. The super heroes were there. For them, it was all in a day’s work. They save lives and protect us every day, not just on 9/11; but the need was greater, and they were more determined than ever that this attack would not break us but make us stronger as a nation. They rushed into burning buildings, tended to medical needs quickly, and protected us to the best of their abilities. These unsung heroes would be the ones who would help restore our faith in mankind once again. They see death, fear, sickness, and tears every day. They are the giving angels put on earth to look after us. We are blessed to have them in our lives, protecting us from harm and offering healing. To honor them and show our appreciation to these everyday heroes—the emergency responders and veterans in Mercer and McDowell Counties, West Virginia—Hospice Compassus Colleagues, volunteers, and members of the Princeton High School Key Club provided trays of treats on Friday, September 10, 2010, accompanied by thank you notes for their fine service. West Virginia Executive Director, Gail Davidson, is passionate about giving back to our community. Once again this year she wanted Hospice Compassus to honor these courageous heroes, making sure they know how much we appreciate their selfless dedication and spirit of giving. They are pillars in our community, and we owe them so much! Every day they make our world a better place. – Jacki McCormick, Volunteer Coordinator Prince ton/We lch, We st Virginia Note: Also included in delivery of the treat trays were Hospice Care Consultants Melissa Powell and Michelle Cook, and Volunteer Mary McKinney. We were so happy to participate in this endeavor.
A Soldier’s Story I
t was almost two years ago when one of our nurses asked me to visit a patient who had touched her heart. He was stubborn, difficult—and that was the kind of patient this nurse loved. But it was deeper, and I knew that as I listened to her compassion and warmth describing this crusty old man. It was the dingy Bronze Star and Purple Heart she couldn’t shake. Especially when she knew he was returning to battle when his eyes closed. Neither medicine nor sleep could keep the images of war from returning. I agreed to meet this patient, who up until that point had refused a chaplain’s visit. We bonded immediately when I saw the guitar sitting near the dresser in the cramped bedroom of his daughter’s house. He loved country music – in fact, he loved all music. We talked about the music and we talked about his time in Korea. He wouldn’t go into details, but it was apparent that the wounds, though received almost 50 years ago, were still fresh. He lay in his bed shirtless, tattoos covering much of his body, and I watched as the nurse cared for him with dignity and grace. He was grateful for her gentle touch, her genuine compassion and nurturing. We were about to go into our weekly staff meeting when I got the call that he had died. The nurse arrived shortly before I did. He had been placed on the floor by paramedics, who had been called when the family panicked. She knelt beside him, cleaning him. The funeral home arrived shortly thereafter. “Please, treat him with respect,” the nurse told the funeral home representative. “He earned the Bronze Star and the Purple Heart.” “I am a veteran,” he replied. With that he covered the frail, skinny body and carried him out the door. Later on that night I sat down, amazed by the love and compassion I had witnessed for a veteran who bravely fought for our country. While he did not die in Korea, a part of him never returned, as he battled Post-Traumatic Stress Disorder the rest of his life. I picked up my guitar and wrote this song, or rather it wrote itself, based on the beautiful and difficult events of that afternoon. – S. Craig Greer, M.Div. Continuing Education Director Birm ingham , Alab am a
Finally at Home Somewhere in Korea, they gave you a heart, And for all the lives you saved, they gave you a star. It’s been more than 50 years since the lines were drawn, But the battle for you, my friend, still lingered on. Play the taps, beat the drums, Look toward the heavens as they fire the guns. Now at last you are not alone, One more soldier is finally at home. A tired, old, soldier, tattooed and bruised, Still bravely fighting, like you used to do. The nurse did hold you and rock you in her arms, Love for the soldier, who’s finally at home. Play the taps, beat the drums, Look toward the heavens as they fire the guns. Now at last you are not alone, One more soldier is finally at home. The guns are silent now, be at peace. Let the love surround you now, it’s all you need. Now, at last, you are not alone. One more soldier is finally at home. An old soldier carried you, The last time out your door. To the restful waters where, There is war nevermore.
The Ride of a Lifetime I
first met Mildred “Millie” Blackwell on her 81st birthday. I had gone to her home with a volunteer, Sadie Johnson, to celebrate the occasion. Millie invited Sadie and me into her home as if we were old friends. Millie’s daughter, Donnis Jordan, also greeted us, and soon we were accompanied by Millie’s entire Hospice Compassus team. Heather Wilson, Social Worker; Jane Flowers, Hospice Care Consultant; Jenny Jo Pepper, RN Case Manager; Bobbie Fultz, CNA; and Billy Joe Deer, Hospice Chaplain, joined us in Millie’s kitchen for the birthday cake and snacks that Donnis had prepared. We talked and laughed, enjoying each other’s company while we waited for our special gift to arrive. Millie, who has end-stage heart disease, is surrounded by her loving and supportive family, including Donnis and a nephew who both live close by and visit her daily. Millie has been devoted to her family all her life, and it’s obvious that her affection is returned. Last year Donnis had wanted to give her mother a ride in a limousine, something that Millie had dreamed of doing for a long time. Unfortunately, they had found it prohibitively expensive. That Mildred with her daughter, did not dampen Millie’s spirit, however, as Donnis Jordan, as the limo pulls into their driveway. she fondly shared the memory of her 80th birthday party with Jenny Jo. A few days before Millie’s birthday, Jenny Jo approached me about the possibility of arranging that limousine ride. This was something I had never done before, but I certainly wanted to try. I asked Jenny Jo to give me a few hours to make some phone calls. I quickly discovered that it certainly is expensive to hire a limo! I was beginning to get discouraged until I spoke to Dennis Tobias at De Classy Limousine Service in McComb, Mississippi. When Mr. Tobias offered to donate his time and service on the afternoon of Millie’s birthday, I wanted to hug him through the phone! Millie enjoyed a day of pampering by Donnis before the party. Her hair was beautifully done, and she had spent a good while choosing just the right outfit for her afternoon adventure. The smile on her face as she walked out to get into the limousine was just the right accessory to bring Vol. 3 • No. 1
Above: Dennis Tobias helping Mildred Blackwell get seated in the limo. Below: Mildred Blackwell with her hospice team standing behind her. Shown L-R: (Standing first row) Heather Wilson, Jenny Jo Pepper, Bobbie Fultz; (Standing second row) Jane Flowers, Billy Joe Deer.
everything together. Sadie and I, along with the rest of our team, said our good-byes to Millie as she got into the limo with Donnis and Brother Billy Joe, who is also her personal pastor. The car pulled away amid waves, smiles, and joyful laughter. The next day I learned that the experience was everything we had hoped for and more. During the ride, Brother Billy Joe had called some of Millie’s church friends so that they could come out and greet her along the way. The trip was filled with hugs and happy tears. I know that all of us who played any part enjoyed the event as much as Millie, if not more. We are so lucky that part of our job description is finding a way to bring a measure of happiness and contentment to others, and we are profoundly blessed each time we do. – Cassandra Hall, Volunteer Coordinator McComb/Natchez, Mississippi
the shared experience
The Last Days Of Extraordinary Lives By Melanie Upshaw Hospice Care Consultant Springfield, Missouri
earts were filled with a new sense of love, compassion, and awareness as over 800 people witnessed the testimonies of thirteen special people, unknown to their audience until they shared a glimpse of their final journeys and gave others the hope that each person is extraordinary in his or her own way. The Last Days of Extraordinary Lives premiered Saturday, October 16, and chronicled the stories of individuals who are facing a life-limiting illness. While most people picture those facing this battle as being elderly and frail, eyes were opened as toddlers, middle-aged parents, and grandparents filled the screen with their own personal stories, sharing their memories and their messages to loved ones they will leave behind. Photographer and videographer Randy Bacon and his wife, Shannon, were drawn to start this project after visiting on several occasions with two of their photography clients, Jan Roselman with Hospice Compassus and Angela Ricketts with Good Shepherd Hospice. Randy and Shannon saw the love the two ladies have for their jobs and the people their agencies serve, and they thought there might be an opportunity to tell the stories of special patients who brightened the days of others while fighting a battle they would not win. The venture, which began as a simple plan to create photographic portraits and corresponding videos of a few people, transformed into a 90-minute documentary that allows viewers to share some of the most private moments and thoughts of the terminally ill. It also educates about the challenges and joys that can be found on the road of final journeys. “We wanted to fashion rousing stories of living to the fullest until God says we are done,” Bacon said. “If we look at life simply as if point A is birth and point B is when we leave this world, this film is about the touching Vol. 3 • No. 1
Chris and Pearl Hollan
stories and inspiring insights, thoughts, and feelings that people have looking back at point A while approaching point B.” Hospice Compassus, along with Good Shepherd Hospice and St. John’s Hospice Care, sponsored the project; and just as the concept grew, so did the goal of the entire endeavor. The ultimate hope is that this film will be accessible nationwide, so that overall awareness of hospice services and end-of-life care will be heightened and answers sought proactively. One of the most phenomenal outcomes of this project has been the establishment of the Extraordinary Lives Foundation. A component of The Community Foundation of the Ozarks, it was established to help people obtain services to enhance the emotional, physical, and spiritual quality of their last days of life—to meet their needs and Continued on next page
Billie D. Day
address their concerns. Examples of these needs are airfare for a relative who wants to say goodbye but can’t afford the ticket, funeral expenses, expenses to make a small wish come true, and the list can go on and on. While these extraordinary lives came from all walks of life and were all facing different giants, they each shared in the commonality of living each day to the fullest and focusing on what truly matters in life. There were no thoughts or worries about the minor things that tend to rob people of their joy, just a desire to voice the importance of putting life in all the days a person has left. Often when families are presented with the subject of hospice, they feel a sense of sadness and angst. However, the message that was offered by these 13 individuals was filled with hope, love, peace, and acceptance; and that is what lies at the core of hospice care. Hospice is more than end-oflife care; it’s a family composed of compassionate people who will be the experts that people need when there is a crisis, the family who will be strong when someone needs a shoulder to lean on, the friend who will lovingly say what’s too hard for others to express, and the heart that will mourn with them when sadness hits. The testimonies of these 13 people not only brought tears and laughter, but the knowledge that ordinary lives can be the most extraordinary of all. H
There Is Life After Loss
PRODUCERS FOR THE FILM Hospice Compassus Good Shepherd Hospice St. John’s Hospice Care Community Hospices of America Foundation Bistro Market by Price Cutter Mike and Jan Roselman Angela Ricketts Sam Stover and Billie Klingaman Howard and Nadia Cavner and family KOSMA Mobile X-Ray In memory of Shirley and Bill McQueary
PEOPLE FEATURED IN THE FILM Pearl Hollan Billie Day Mary Baxter Naomi Caron George Wilkinson George Shergalis Bob Muldrow
Garret Wittman Robert Egbert Wilma Harthcock Inez Yoder Linda Noble Betty Silvestro
Cindy and Wally Jones
A Hospice Compassus Support Group Helps a Husband Get his Life Back on Track By Wally Jones Springfield, Missouri
n early May 2010 my wife, Cindy, was diagnosed with cancer, and shortly
prognosis. We followed the advice of two of her doctors and contacted Hospice Compassus, even though—except for the oncologist’s words—she felt just as she had a month earlier. I could go on about the wonderful care Cindy received and how Hospice Compassus took care of her, both at our home in Springfield, MO, and at her sister’s in Fort Worth, TX, where she finally left this life for her eternal one just one month later. But that’s a story for another time. What I’m writing about, without trying to sound self-centered, is me and my life since then. The first month was a hectic blur of phone calls from friends and family, a mailbox stuffed with sympathy cards, and more emails than I thought my inbox would hold. The time was so full that there was little or no time to even begin grieving. But after a while everyone went home, the only mail in the box was a few bills and ads, and the calls became less frequent. My life suddenly ran off the end of the pavement and I was traveling a muddy, potholed path, alone except for my dog. Oh, there were my church family and a few close friends who offered continued support; but without a job to keep me busy and no
Vol. 3 • No. 1
one else in the house, it didn’t take long
owe anyone an apology for our decisions.
for loneliness and depression to set in.
They also helped us to hold on to those
What would I do? How would I go on? I
good memories of our loved ones, and
couldn’t see much of a future.
not let them be buried along with their
Then I received an invitation from
earthly bodies. Together, the group shared
Deborah Andrews, the Bereavement
stories, laughter, tears, and even our loved
Coordinator in Springfield, to attend
ones’ favorite recipes as part of learning
a workshop/support group called Life
that grief encompasses the whole range
After Loss at the Hospice Compassus
of human emotions.
office. I knew I needed to go, but I had
My grief is far from over, and I sure
my doubts. Would I be the only man?
haven’t gotten through it as many who
Would I, at 59, be the youngest person in
have never known personal loss might
the room? Would others see me as being
suggest I should. I know that there will
weak? I was nervous, but I went.
always be days and events that will trigger
Surprisingly, I wasn’t the only man in
sorrow and tears, smiles and laughs; but
the group, and there were much younger
I also know that I can embrace them as
people there as well. Over the next
precious memories of my dear Cindy
six weeks, I learned that I’m not alone
and opportunities to honor her memory
with my feelings, that there are others
rather than see them as signs of weakness.
who are going through the same mix of
I wouldn’t have learned that most valuable
emotions. I learned that it was okay for
lesson in living after loss without the
me to cry sometimes, smile at others,
guidance from Deborah and Suzy and the
and even laugh when thoughts of Cindy
privilege of making that journey with the
come to mind. I don’t have to always be a
other men and women in the group. Each
John Wayne or Clint Eastwood tough guy
of them has become part of my life, and
who never lets anyone see the human
I am honored to be allowed to share in
pain behind the mask. Deborah and
their grief as they share in mine.
Suzy Lynch, the Chaplain, helped all of
I hope and pray that the sharing of my
us in that group recognize that we have
story might encourage someone who
a right to grieve, that we don’t have to
feels all alone in their grief to seek out the
make excuses for tears that can appear
help and, yes, healing that I found through
without provocation. We can celebrate
the compassion, caring, and love I found
through the Life After Loss workshop/
others—it’s OUR choice, and we don’t
A Magical Combination
Dreams and Chocolate By Ginger Harrison
Volunteer Coordinator • Branson, Missouri
Ooey and gooey, oozing and dripping, creamy and crunchy, mouth watering, eye pleasing, fudgy confections…cakes, candy, cookies, desserts...and gravy?
A three-foot clock crafted entirely from chocolate was one of several pieces in the Big Cedar Lodge exhibit.
ombine above ingredients; stir in compassionate Friends; George Dyer; Jeff Gordon as Elvis; Judith and ambitious hospice volunteers. Incorporate Dutton; Bernie Parquette; comedian Terry Sanders; talented entertainers. Add a heaping measure Rushing Wind from Springfield, MO; Dr. James of exhibitors handing out chocolate samples. Throw Lukavsky, Medical Director for the Branson program; in a silent auction. Garnish with spirited chefs and and volunteer Richard Grim of Santa America, who chocolatiers. Roll it out on National Chocolate Day, and posed as himself—Santa Claus! Country music artist you’ve got…the makings of a Chocolate Extravaganza! Barbara Fairchild entertained guests and entered the That’s exactly what took place October 28, 2010, in Chocolate Challenge, showcasing the Barbara Fairchild Branson, Missouri. The Extravaganza was hosted by the Diner and Show as an exhibitor. Emcees and judges Hospice Compassus Dream Team, and the money raised were Branson’s the Mayor Honorable Raeann Presley; went to the Dream Team Fund of the Community Hospices Ideal Ms. Senior Missouri Holly Teven; Debbie Dance of America Foundation. (CHA is a predecessor of Hospice Uhrig, Master Craftsman of Culinary Art for Taste of Compassus.) Home at Silver Dollar City; Nan Approximately forty chocolateand Stan Bess from the Branson bearing exhibitors participated in Vacation Channel; Ronnie Page the Extravaganza, culminating from the Branson Independent in the “Chocolate Challenge.” Newspaper; Steve Willoughby from Entrants presented their chocolate the Steve and Janet Show at KRZK; showpieces, which were ranked by and Stone and Taney County celebrity judges for their creativity Prosecuting Attorneys Jeff Merrell in the use of chocolate, presentaand Matt Selby. tion, and flavor. Two exhibitors, Guests were also enchanted by Branson’s Sugar Leaf Bakery and Shirley Wilcox, a former Hospice Big Cedar Lodge, shared many of Compassus patient and now graduate. the top awards for their fabulous Shirley was there to share her story and tasty creations. of how the Dream Team took her Celebrities participating in wish and turned it into a reality. As the event were Cassandre’; The a hospice patient, Shirley’s dream Entertainer George Dyer serenading Cat’s Pajamas; Michelle Deck; was to make a final trip to visit former patient and dream recipient Shirley Wilcox. Teri Barry; Patty Davidson and her family in Oregon and see the 10
Far left: KRZK’s Steve Willoughby and Branson Mayer Raeann Presley present Chef Daniel from Big Cedar with the first place trophy. Left: Dr. James Lukavsky, a Medical Director for the Branson office, charming guests with a traditional Irish tune.
grandchildren she had never met. Her wish was fulfilled in April when the Dream Team partnered with Senior Dreams and sent Shirley and her sister/caregiver to Oregon for a family reunion. As her story was told, many guests fought back happy tears, seeing firsthand how life changing the Dream Team endeavors can be for both patients and team members. That evening many guests learned what all volunteers discover when they begin their work—“The blessings really do flow both ways.” The Dream Team is the newest aspect of the multi-faceted services the Branson staff has developed to enhance their care for those facing the end of life. Led by Hospice Compassus Social Worker Diane Hasler, the Dream Team has had 39 requests since its initiation in February 2010. They have facilitated everything from simple dreams like a new pair of eye glasses or a laptop to complex dreams like arranging weddings and locating estranged family members for family reunions. The Dream Team has had the privilege of watching patients’ lives transform as their dreams unfold, as well as the pleasure of experiencing community support that surpasses all expectations. They have been overwhelmingly encouraged to ensure resources are available to create these magical moments for their patients—in fact, plans are already being made for next year’s Chocolate Extravaganza! In the next issue, look for an article on the Dream Team from Joplin, MO, and their “Sweet Dreams Extravaganza.”
Above: Branson comedian Terry Sanders and Santa present Amanda and Lori from Sugar Leaf Bakery with the People’s Choice Award. Left: Sugar Leaf Bakery’s Chocolate Challenge entry: life-sized dress, shoe box cake topped with shoe, and overflowing shopping bag, all entirely chocolate.
Vol. 3 • No. 1
lessons from the field
A Day in the Life of a Hospice Nurse
y patient—let’s call him “Joe”—had COPD—Chronic Obstructive Pulmonary Disease. He lived in the far rural outreaches of a neighboring county. Joe had been referred to hospice late in his illness, and I’d seen him for the first time the day before. He could barely breathe, even while wearing his oxygen. It was easiest for him while he was sitting up, so he stayed in his easy chair. He even slept there. Joe’s wife kissed him goodbye as she left for work every morning; there wasn’t much money, and she couldn’t afford to stay home. So each day she left him alone, in the care of their two dogs. I called Joe that morning to let him know I was on my way, but there was no answer. I decided to drive out anyway; I couldn’t imagine how he could leave home—he was much too sick. I arrived at the tiny house, which was locked up tight. I knocked on the door; but everyday COMPASSION
there was just silence except for the dogs barking in the yard. I stood up and felt the sanctity of the moment. One was a large, furry, mixed breed and the other was a small I said a little prayer. My poor patient had finally terrier. I knocked harder on the door and then called from my gotten to lie down. I called my office to report his cell phone. No answer. I tried to get his wife, but she wasn’t at death and asked for a social worker or chaplain to work. The dogs were still barking wildly. I walked around the come out. His wife would come home soon, and side and went into the garage, but there was no door to the I wanted her to be supported. I gently placed a house. I didn’t want to leave—I’d driven nearly an hour to get pillow beneath his head and then went looking for there, and I knew something must be wrong. I had visions of Joe dry clothes. After finding a sweatsuit in a pile of struggling to breathe, or dying with nobody at unfolded laundry, I undressed him his side. I walked over to the gate in the chain carefully, modestly, and proceeded The smaller dog was link fence. The dogs were barking riotously at to bathe him. I put the clean clothes me. I could feel my heartbeat as I considered nipping at my legs on him, sat down on the sofa, and the options. Do I leave? Do I sit down and wait started my nurse’s note. The dogs as I knelt beside his (for what?), or do I go into the backyard with were quiet. the dogs and try to get in through a back door A social worker arrived, and master. “It’s okay, or an unlocked window? I looked at the dogs. shortly thereafter I heard Joe’s wife I’m here to help.” They were barking—they weren’t snarling. I drive up. I walked to the door and He seemed to didn’t remember anyone telling me they weren’t introduced myself. She looked at friendly. Of course, the only other time I’d been understand and sat me with expectation. “Is he dead?” there, I’d had a family escort. I remembered she asked. “Yes, I’m so sorry,” I down next to me. from somewhere in the recesses of my mind that, answered. I opened the door for her; in case of confrontation by a vicious dog, you and as she walked in, she began to should protect your dominant (stronger) arm, in case you need cry. “I told him I’d stay home today, but he insisted to use that arm as a weapon. Okay… so I am now contemplating that I go to work. He kissed me on the cheek and entry. I transferred my nursing bag to my dominant right hand said he just wanted to lie down.” She sobbed louder. and unhooked the gate. I took a deep breath and entered the When she had gathered herself, she stood up yard with my left side first. So far, so good. The dogs continued and gazed at him. “Did you find him like this?” she to bark and run around me, but they didn’t appear to want to asked. I told her I’d placed the pillow beneath his harm me. head and that I had bathed him and changed his I found the back door, but it was locked. All the windows were clothes. She started laughing and told me those locked tight as well. I stood on the back stoop and contemplated were her sweats. Then she asked me how I got in the doggy door. The dogs had started to calm down, and they the house. I told her I’d crawled through the doggy entered the house through their little door. It was almost as if they door. She laughed again. were inviting me…. I took another deep breath. Would I fit? We discussed many things while we waited for How embarrassing it would be to get stuck in a doggy door! And the funeral director to arrive. She told me about would my patient forgive me for entering uninvited? I got down the dogs, and how the little one had belonged to low in preparation for entry. It looked possible, so I put my nursing her before she and Joe had married. She said that bag through first. The dogs were no longer barking. I managed dog had never really taken a liking to her husband. to crawl through, then picked up my bag and walked into the I told her it was the little dog that had been living room. Joe was lying on the floor, not wearing his oxygen. It protective as I took care of him. She sobbed again. looked as if he had just lain down on his back. I checked him and The funeral director came and took Joe’s body, pronounced him dead. The smaller dog was nipping at my legs as and it was time for me to leave. Joe’s wife smiled I knelt beside his master. “It’s okay, I’m here to help.” He seemed and said it was okay for me to exit through the to understand and sat down next to me. front door.
Vol. 3 • No. 1
A Nurse’s Story A
By Lari LaBello, RN, BSN On-Call RN Peoria, Illinois
fter graduating from nursing school in 2000, I took the advice of my professors and spent several years in med-surg and critical care. It was just enough for me to gain valuable experience and realize that there were many aspects of nursing I did not like! Now what? Again, I took advice.This time it was a dear friend with whom I have served in a ministry for people with disabilities. He recommended I take an inventory of my life and gave me the book “Cure for the Common Life.” The author, Max Lucado, encourages the reader to look back…to jot down favorite memories from childhood, teenage years, young adulthood; and to write down WHY these memories stand out. Lucado believes that an inventory of happy (and sad) memories will allow us to find our “sweet spot.” In my case, my most vivid memories revolved around two themes: working with people who have disabilities and someone dying! I laughed out loud as I recalled teaching my disabled sister how
to roller skate by placing a dust mop on her chest and dragging her around the basement. I laughed and cried as I remembered the weeks I spent at my grandpa’s bedside as he faced death. Grandpa Art taught me that death is not to be feared, and he helped me to realize an inner strength I didn’t know I had. Seeing his peaceful passing from this world into the arms of Jesus gave me an awareness and ability to look past the unfairness, pain, and anguish. I always wanted to be a special education teacher; however, because of my sister’s disability, I was concerned about becoming too emotionally attached and the inevitable burnout. So, I have always channeled my desire to serve these special friends into recreation and ministry. That left me staring into the face of death! How could it be that my best memories, my most lifechanging experiences, revolved around death? Like a lightning bolt, it hit me! Because of my faith, I view death as a beautiful gift…an achievement…a beginning, not an end; therefore, care for the dying stood out boldly as my most rewarding nursing experience. Hospice! That was the answer! This revelation changed my life. Since I started my journey with hospice in 2007, there have been many times when I have had to remind myself that it is okay to accept a paycheck for this work. Hospice feels like a ministry. In hospice, I have found a way to answer my calling and provide for my family. Please don’t get me wrong—hospice is hard work! The exhaustion I experience at the end of the day is emotional fatigue that leads to physical collapse at times. However, the patients and their families keep me coming back! In hospice there is no rich or poor; no strong or weak; no race, religion, or sexual orientation; there is only the realization that someone is facing a terminal diagnosis. The helplessness, fear, uncertainty, and pain are universal. I see hospice as a toolbox and a guidebook in the form of human interaction. As a hospice nurse, my most rewarding achievements center around empowering families and patients to focus on what they CAN do! We all know what they CAN’T do. They can’t make it all go away, cure the disease, or simply ignore the problem. The hospice interdisciplinary team provides the teaching, spiritual support, and guidance needed to face and embrace death. Hospice allows me to spend time with my patients, to hug them and hold them, to build relationships with family members (and hug them, too!), and to be a part of a team I can believe in. Hospice has made me a better person.
free as a
butterf ly A
By Deborah Musick, M.Div. Volunteer Coordinator Sedona, Arizona
Vol. 3 • No. 1
Volunteer Coordinator may be called to respond to a patient’s need far beyond our designated job duties. Sometimes the call can unfold into a beautiful story of promise, forgiveness, and future. This is a brief story of such a happening in Sedona, Arizona. I received a call from one of our case managers on a Monday morning that her patient had taken a decline over the weekend and couldn’t be alone. A volunteer was already there, and I traveled to the patient’s home to see if I could assist in any way. In addition to being the Volunteer Coordinator, I am also a chaplain; so I was actually wearing two hats that day. I sensed that this patient was having some difficulty in “letting go” of some heartfelt situations, and I wanted to be sensitive to the matters of the heart. The patient was weak, and in order to hear her, I climbed into the bed to hear her whisperings. I asked her if she desired prayer, and she said yes. Her little black prayer book was beside her, and I read some prayers from it; then I asked her if she needed prayer and she said yes…again. I took her hand in mine, and leaning down close to her, I prayed with her. Then she began to tell me a story about her father, how two men had injured him with a severe beating when she was a child, and she wanted to forgive them. I said, “Well, let’s take care of it.” I told her I would pray on the outside, she could pray on the inside, and I trusted that God was listening. I began the prayer. I cannot tell you what I said; but afterward, the burden that had been reflected on her face was lifted, giving way to a smile. We
then prayed for all of her children—that peace, reconciliation, and forgiveness would come to her home and to their hearts. I returned the next day to sit with her, with another volunteer, and she seemed to rally. She made one comment that I will never forget. She looked at me and said, “I’m going to be so happy.” I knew at that moment that heaven was near, and my own faith was strengthened. When this patient passed, I heard of the news and was saddened. That same afternoon, I received a friend’s email with a photograph taken that very day. As I looked at the picture, it dawned on me that this wasn’t a coincidence. The picture was a butterfly sitting on a flower; and in the subject line, my friend had typed, “Free as a butterfly.” I will always remember her words, “I’m going to be so happy.” Somehow this woman and God were conveying the message of freedom, peace, and happiness through this picture. Some people would say it was just a coincidence, but I choose to believe that the picture was a window into the eternal. As servants of hospice, we face many days of loss; yet subtle messages of hope cross our paths every day as we walk this path with others. A letter from the daughter of this patient arrived weeks later, thanking our staff for helping her mother. Her words conveyed a sense of thankfulness and joy as she wrote, “I had prayed for a long time for Mom to let God out of the ‘box’ she kept Him in. That prayer was answered through all of you. Without saying anything, you all showed her God’s love in action.” In the letter I sent back to the daughter, I shared the story of the events that preceded her mother’s passing, along with the photograph of the butterfly. I believe the daughter’s prayer was answered—that God did come out of the box through the compassionate hearts of our hospice staff; but more importantly, God let her mom out of the box eternally. It’s amazing how God works to give us messages of peace and unexpected surprises as we travel this road in hospice. 15
Giving Back Providing excellent, compassionate care to patients and their loved ones
By Peggy Brown Executive Director San Antonio, Texas
r. Ruben Tenorio, Medical Director for Hospice Compassus San Antonio, is always looking for ways to “give back.” In addition to being widely respected in his position with us, Dr. Tenorio is an expert in cutting-edge treatments for high blood pressure and diabetes, two diseases prevalent in the Hispanic population of San Antonio. While his medical practice has grown over his 20 years of practice in San Antonio, business success has never been the driving force behind the choices he makes about where and how he spends his time. It takes something other than money to repay those who helped him succeed in life, according to Dr. Tenorio. After graduating from Michigan State University College of Osteopathic Medicine and finishing his residency at a Detroit hospital, he decided to move back to San Antonio and open his practice in a neighborhood where Spanish was the predominant language and much of his patient base was poor and lacked medical insurance. Not only did Dr. Tenorio have to adjust to speaking the Spanish he learned as a second language; he also had to determine treatments for a diverse patient population that included immigrants from Spain and Mexico, as well as other Latin American countries along with Texas natives. His background, though, gave him a special bond with his patients. “I was born in that kind of neighborhood” he says. Giving back is what it’s all about for Dr. Tenorio. Outside of his busy private practice, he spends 10-20 hours a week working with Hospice Compassus; and he travels as a team physician for USA Boxing, a non-profit organization that oversees the development and promotion of Olympic-style boxing in the U.S. In San Antonio he serves as board member for the Magik Theatre, whose mission is to support the healthy development of children by making the arts accessible through creative performances and programs for them. Dr. Tenorio has served as Medical Director for Hospice Compassus San Antonio for 6 years. He is known among the
hospice staff as “the best of the best in clinical leadership.” As an example of being extremely available to patients and staff, he takes call for hospice patients 24/7, 365 days a year. And he always does so with the deliberate intent of providing excellent and compassion care to patients and families, while educating and encouraging the staff during each interaction. In describing the care team in San Antonio, Dr. Tenorio says, “Hospice Compassus is made up of a network of well-trained professionals focused on providing resources and practical assistance designed to empower patients, families, and caregivers in end-of-life care and support. Our mission is to provide excellent, compassionate care to patients and their loved ones, so that they may complete their mission on earth in comfort, peace, and dignity.” Through Dr. Tenorio’s leadership our team has grown in its clinical expertise and its commitment to quality care and compassion. He reminds us all that “giving back” is not only a compassionate gift to those we serve, but a healthy and fulfilling gift to ourselves. everyday COMPASSION
A Tribute By Vicki Brown
Volunteer Coordinator • Springfield, Missouri
here are lots of losses experienced throughout one’s lifetime. With some of them, everyone around you “tunes in” instantly, like when you lose a parent, child, or spouse. Then there are other members of your family that, if your friends are aware of their passing, they’ll also give you a hug or send a card, or give verbal acknowledgment and condolences. If we lose a dear pet, most people are kind about it; those who know us well are even more sympathetic, because they realize we’ve lost a family member of a different kind and our grief is very real. Perhaps the loneliest grief we work through is when we lose a dear friend. In that case no one, not even another dear friend, really knows your connection with the deceased or what special place that person held in your heart. I have a stone in one of my flower beds that reads, “Friends are chosen family.” That statement holds more truth for me than most of my friends realize. I have recently experienced an especially saddening loss—the loss of one of our very valued volunteers. He had just been in to see me a few hours before he was found in his yard, dead of an apparent heart attack. He and his beloved golden retriever always came by shortly before Halloween to tell me goodbye for the winter. Bob and Laura and their furry friend wintered in Brownsville, Texas, usually until the first of May. Bob loved to joke, and he liked to “rub it in” about how he would be in a warm swimming pool while we shoveled snow. I had gotten my farewell hug and been privileged to observe Spruce do his famous “wait for the cookie” trick while balancing it on Vol. 3 • No. 1
his nose. We had talked about how things had been so hectic that we hadn’t had time to have them over for supper or vice versa. Both our families had moved in the last couple of years, and I believe both Bob and I wanted our yards to be at their best before “presenting” them. Bob’s, of course, was more exotic—he had planted seventeen banana trees in his back yard! My latest addition to the backyard was my raised concrete garden area, surrounded by my “ordinary” giant hibiscus plants. I was very grateful that Bob’s wife, Laura, thought to call me that very evening to let me know she had found Bob doing what he loved best—being in his garden. Devastation was my first emotion, not disbelief. I must admit that it took me a couple of days to understand why the loss of this amazing person hit me so hard. Bob and his wonderful disposition and willingness to help others had been obvious to me for a long time. He had been one of our volunteers since 1998. His knowledge, kindness, and master craftsmanship were also things I was well aware of. Bob was almost always available to help when I called with a patient request or “angel” watch, and very apologetic if his schedule kept him from being able to do so. But the emptiness I felt when hearing that he wouldn’t come by and see me or call to joke with me ever again was the kind of emptiness you feel when you lose a family member. After attending the wonderful tribute of a memorial service, I did begin to understand things a little better. MANY friends got up and eloquently told touching
stories of Bob and what knowing him had meant to them. A young man from Kansas City said he had met Bob and Laura about twenty years ago and had only seen them maybe six times since. He also said that when he heard the news, he felt as though he had lost his best friend—my own feelings exactly. After hearing many similar stories, I realized that Bob had a special gift for meeting people and touching and holding their hearts.These other caring friends told story after story about the impact this man had on their lives. I will always be sorry I was so choked up that I couldn’t get up in front of his dear friends and tell them how Bob had lit up our part of the world by being such a kind, caring person and one of our special volunteers. Bob Benham was an extraordinary person and friend. He had that wonderful ability to act as a mentor and was a shining example for everyone he encountered. Our staff often gets very attached to their patients and families. It’s really no different for us Volunteer Coordinators to get close to our volunteers. I truly view these people as my friends. We share ups and downs and crises with each other. I care when one of them is ill; and I’m happy for them when there’s a major accomplishment, a birth, or a special anniversary to celebrate. These same people have shown me kindness and prayed for me when I was under the weather. They have given me inner strength with their willingness to help and their caring, compassionate hearts. They are part of my hospice family. 17
Dreams Do Come True hen asked by Hospice Compassus Social Worker, Julie LeBlanc, what he wanted to do before dying, hospice patient Lee Lett teared up. Without hesitation he pointed to his girlfriend of over sixteen years and said, “I want to marry her.” Those few words were all it took to set in motion a flurry of activity that culminated in his dream wedding one week later. In February 2010 Hospice Compassus formed a Dream Team made up of staff and volunteers. The Dream Team’s goal is to make the last wishes of their terminally ill patients come true. This request was one the Joplin, MO, team knew they could help make a reality. Lee Lett and Debra Dickerson met about seventeen years ago and immediately hit it off, but they decided to wait on marriage. The pair met while trying to clean up their lives, both entering a drug and alcohol rehabilitation program. For Debra, it was love at first sight. Lee got out of rehab first; and when she followed, they became a couple. When Lee was told he had a limited amount of time to live, he knew it was time to make Debra his wife. He told his Joplin hospice team that he wanted a wedding done up right, and Debra started to cry. The staff and volunteers worked furiously for the next eight days to put together the perfect wedding. Volunteer Janet Mittag offered decorations from her daughter’s wedding, which just happened to be in purple and lavender, Debra’s favorite colors. Loree’s Bridal in Pittsburg, Kansas, was told of the dream and graciously offered an outfit complete with formal gown, veil, and shoes. Best Western in Neosho, Missouri, provided the space for the wedding, as well as a room for the couple to spend the night. Shoney’s and Quizno’s, both in Neosho,
By Teresa Severs Volunteer Coordinator Joplin, Missouri
Debra and Lee Lett cutting the cake at their reception.
contributed meals. Other donations included a limo ride to the hotel from Mason Woodard Funeral Home and flowers from Price Cutter—even the ring set was a gift! The room was filled with guests eager to witness this long-awaited event. At 1:00 the afternoon of October 10, Lee watched his beautiful bride walk down the aisle in her lovely gown to the music of Kenny G’s “Forever in Love.” Debra’s make-up and hair were so carefully done that she later told her guests she felt like a princess. Lee’s brother, David, “gave her away” and stood by Lee as his best man; and Lee’s sister, Karen, was Debra’s maid of honor. Once Debra reached her soon-to-be husband, the two stood together staring into each other’s eyes. Debra could not stop crying, so happy this day had finally arrived. Rich Williams, minister and friend of the couple, shared a few words and prayers before turning the ceremony over to Hospice Chaplain, Danny Mullins. Vows were exchanged, and Debra had prepared a few special things to tell Lee in front of their family and friends. She said he was “her everything.” Lee admitted he was not very good with words, so he asked for “Lady” by Kenny Rogers to be played for Debra. They placed wedding bands on each other’s fingers and at last were introduced as Mr. and Mrs. Lee Lett. The reception was coordinated by the Hospice Compassus staff and volunteers. In fact, the beautiful wedding cake was made by a volunteer, Marsha Mauersberger. As the reception ended, Debra turned to one of her guests and said, “I feel like this smile is just glued to me.” Even though they didn’t know how much longer they would have together, this was a day they would never forget. “It was perfect,” the couple concluded.
Living With Hospice A Continuing Education Program By Julia Logan-Myers Volunteer Coordinator Tullahoma, Tennessee
was privileged to attend the Volunteer Coordinator National Conference
hosted by NHPCO in Orlando, Florida, in December 2009. Between presenters I was chatting with a fellow Coordinator from Massachusetts, and she described a program in which she offered a Hospice 101 class based on her regular volunteer training. A light bulb went off in my head and I immediately thought, “This woman should be the next presenter on stage, sharing her idea with all of these Volunteer Coordinators from across the
what hospice really is, and what we do and don’t do!
country!” As I departed from a weekend
The beauty of it is that, just as with volunteer train-
of great learnings, at the top of the list
ing, someone from each discipline tells his or her own
was the Hospice 101 class.
story of the journey leading that Colleague to hospice
Early last summer Edie Rimas, our
work and explains the role. It’s that representation by
Executive Director, and I had our first
meeting with a Continuing Education
ities, enthusiasm, and love for this ministry of hospice,
representative from Columbia State
that is so endearing and compelling to the audience.
Community College, their Director of
Needless to say, the course was a success! Over
Nursing, and a Nursing Instructor. Our
the four 2-hour sessions, we had between 21 and
vision for this class was met with accep-
31attendees. We ended the last meeting with a
tance and excitement, and the date was
celebratory cake, provided and decorated by one of
set for the fall term. As of November
our very special volunteers, Dana Young. I would be
11, 2010, we have completed the first
remiss if I did not mention our Hospice Compassus
of what we hope will be many “Living
Continuing Education guru, Craig Greer! He saved me
Life with Hospice” courses. I believe
by preparing the syllabus and evaluation for the class. I
this class offers great education to the
certainly hope this program will be a much-requested
communities we serve. We’ve all heard
and frequently delivered offering by all our locations
comments like “I didn’t know hospice
across the country. Oh, did I mention that we will now
did that,” or “If only I had known, we
be offering this class next spring to Motlow State, our
would have called you in sooner.” The
local community college in Tullahoma? Please don’t
course is a wonderful venue to dispel
hesitate to contact me for more detailed information.
those myths and rumors about who and
I would love to share!
Vol. 3 • No. 1
Grieving In Your Own Way A new book highlights different “styles “of grieving and holds the promise that, no matter how we express our pain, there is healing and peace for each journey of grief. By Mary Austin Chaplain Detroit, Michigan
raditional grief support groups are immensely helpful for many people, and anyone who attends a group knows how powerful the experience can be. As people open up to each other about the process of grief, healing creeps in. In the sharing of deep feelings of loss, anger, relief, disappointment, and gratitude, members discover the power of knowing that they are not alone in grief’s ravages. Groups often end with new friendships made, and the support extends on beyond the formal group as members continue to get together. For some people, though, a support group just doesn’t feel right. Many bereaved people struggle to know what to do with their grief. The Five Ways We Grieve, a new book by Susan A. Berger, describes different styles of grief and invites those who have experienced a loss to find their own path. Berger believes that we all grieve in different ways, and that we fall into five general categories as mourners. The Memorialist lives out grief by finding tangible ways to remember the person who was lost. A quilt, an art project, a foundation, an annual fundraising event, or a campaign to raise awareness about the source of the person’s injury or death are all exercises in working through grief for the Memorialist. In such ways, the loved one lives on in the world. The Normalizer finds solace in relationships. As Berger notes, “Normalizers are the survivors whose primary goal is to create or re-create the life they lost when their loved one died.” The loved one can never be replaced, but Normalizers seek to replace the lost identity, perhaps adopting a child to replace one who died, or remarrying after the death of a spouse. Normalizers have learned, Berger observes, “that life is finite and unpredictable, yet precious.” The Activist makes sense of grief and honors the lost loved one by seeking to
make life better for others. The ache of grief makes way for acts of service or social justice that make the world better, and Activists transform their loss into positive service. Many people who experience an early loss become social workers, grief counselors, pastors, or teachers, dedicated to helping people as a life’s work. The Seeker “experiences the death of a loved one as a catalyst for exploring the spiritual questions about life,” Berger writes. The Seeker might explore the wisdom traditions of different faiths, try different religions, seek solace through meditation and yoga, or pursue truth and transcendence in other ways. Mystery and a deeper connection with the sacred guide the seeker’s process of grief. Finally, the Nomad is the person still struggling with grief after many years. According to Berger, “In the days, weeks, and months immediately after a significant loss, we are all nomads.” Grief is overwhelming and the loss feels unreal, leaving us wandering through a wilderness of pain and shock. Long-term Nomads never find a way to work through the feelings of grief, and so the loss continues to dominate their lives for years. This may look like strength and getting on with life, or it may show up in poor choices such as heavy drinking or other numbing activities like compulsive shopping or eating. Of course, grief is never as neat as books make it seem, and an individual may have a combination of styles or even change styles over time as grief shifts. Still, awareness of these five styles can assist our understanding of what eases our own personal grief. As we grieve, we can try different activities to see what seems most helpful. This compelling book is another tool for our passage through loss, and it provides interesting insights into the different ways we find healing and peace on the journey of grief.
Better Communication, Better Pain Management A $2.1 Million Grant Plans to Improve Communication Among Caregivers and Hospice Staff
By Natalie Fieleke
Senior Information Specialist University of Missouri School of Medicine
or more than a million patients who receive hospice care each year, improved communication among caregivers and hospice staff could mean less pain during the final days of life. This is what a pilot study by Debra Parker-Oliver, PhD, has suggested, and what a new $2.1 million grant from the National Institutes of Health will allow her to thoroughly research over the next four years. “The whole idea is that we involve the caregivers and educate them, because they are who care for the patient every single day,” said Parker-Oliver, an associate professor of family and community medicine. “We’ll train them to become a part of the hospice team.” Parker-Oliver’s new randomized controlled trial will involve 544 hospice caregivers and three longstanding hospice programs in the state of Missouri. Researchers will observe the impact of caregivers’ and patients’ participation in hospice meetings on the caregivers’ perception of pain management, and how caregivers’ perceptual changes influence patients’ reported levels of pain. “Throughout our lives, we’re taught that strong drugs like morphine are bad, and that we should be careful not to give too much or people will become addicted,” Parker-Oliver said. “Perceptions such as these are often barriers to caregivers who have to administer these drugs to a loved one to help them manage pain.” Eight years ago, MU researchers embarked on this area of study by asking how they might help overcome communication barriers by involving family caregivers in hospice staff team meetings, alongside the physician, nurses, and social workers supervising their loved one’s care. Parker-Oliver received an MU Research Board grant and used it to buy two videophones and develop what they call an ACTIVE Intervention – Assessing Caregivers for Team Intervention via Video Encounters. In a 2006 to 2008 pilot study funded by the National Cancer Institute, Parker-Oliver tested the ACTIVE Intervention. Researchers used the commercially available phones to connect a small group of family caregivers with their hospice care teams 45 minutes to an hour away. The caregivers could see a small image of the team, and on the other end at the hospice office, staff members could see a larger image of the caregiver projected onto a large television screen. Researchers measured caregivers’ perceptions of pain management at the patients’ admission to hospice and then monitored their interactions during the care team meeting every two weeks. “Our small study showed that it doesn’t take a lot of exposure to Vol. 3 • No. 1
Debra Parker-Oliver demonstrating the device that will enable caregivers and hospice staff to improve communication with one another.
that care team to make a difference,” Parker-Oliver said. “It’s almost magical when care providers and patients see that there’s an entire roomful of people taking care of them, even though they might feel quite alone in their home.” While the pilot study helped collect preliminary data, Oliver said the purpose of this larger study is threefold. “We want to be able to definitively say that when caregivers are involved in the hospice team meeting, it does improve patient pain, and that using the videoconferencing equipment is cost-effective, and that it’s feasible for hospice programs to do,” Parker-Oliver said. “We’ve found a way to empower caregivers to participate in the care planning of hospice patients and improve pain management for patients.” The new research also expands upon earlier study methods, allowing caregivers the option to connect with hospice personnel using a videophone or Web camera and secure videoconferencing site. Along with Parker-Oliver as lead investigator, the telehospice study draws on the expertise of a multidisciplinary team of researchers. MU co-investigators include Robin Kruse, PhD, associate professor of family and community medicine; Marilyn Rantz, PhD, Curators’ Professor at the Sinclair School of Nursing and Helen E. Nahm Chair; and Paul Tatum, MD, assistant professor of family and community medicine. Other co-investigators include George Demiris, PhD, an associate professor of biobehavioral nursing and health systems at the University of Washington, and Elaine Wittenberg Lyles, PhD, an associate professor of communication studies at the University of North Texas. 21
It’s a word that many are afraid to hear. And yet, those who have actually experienced hospice say they don’t know how they would have survived the death of a loved one without it. I see so many families struggling with the medical needs of a loved one. Numerous doctor’s office visits, multiple hospitalizations, frequently changing medications—it’s a roller coaster ride. Most don’t even realize they might qualify for hospice. Family members wish someone would guide them in decision making, assist them with questions that need to be asked, help them figure out this By Kimberly Hodges, RN, BSN maze we call healthcare. Hospice Care Consultant Families face many endMcComb, Mississippi of-life decisions regarding artificial nutrition and hydration and “Do Not Resuscitate” orders. Who helps these families navigate our overwhelming healthcare system? We must also ask ourselves, “When modern medicine cannot save a life, then what should it do?” There has to be a stopping point. There has to be a point when medical professionals say, “This treatment isn’t working, so let’s talk about what will work to manage your symptoms and give you and your family a better quality of life and the support you need.” Patients and families should not be encouraged to pursue aggressive treatments when they cannot save the life or relieve the symptoms. Coming to the decision to stop these treatments is scary and often unknown territory for both the medical professional and the family.
Yet there is hope—hope for better management and control of symptoms and less suffering, hope for professional, compassionate care by trained people who understand. There is hope for spending time doing meaningful, happy things instead of treatments that many times cause even more suffering. Hospice doesn’t have to be a scary word or a bad place, and it doesn’t mean giving up. Hospice is about choices. Hospice is about allowing patients and families to have care that is meaningful to them. Hospice is about hoping to live long enough to see that grandchild’s birth or child’s graduation. Hospice is about staying home rather than in the hospital. Hospice is about finally finding the right care during a most difficult time. Hospice is about relishing the time given until it is time to let go. If you or a loved one is facing a debilitating, life-limiting illness, call Hospice Compassus. We can help.
H OS P I C E
QUIZ Answer True or False to each question. When people are placed on hospice, they die within a few days of admission. False - Patients admitted to hospice have a terminal diagnosis with a life expectancy of six months or less. While most of these patients die while receiving hospice, some live longer and many have a better quality of life with the help of the hospice team. Unfortunately, too many patients are referred late in the disease process. The median length of stay for hospice patients was just over 21 days in 2009, far short of the six-month prognosis required by Medicare. Through aggressive pain and symptom management, hospice has been shown to prolong the lives of some terminally ill patients. Studies have shown that patients who chose hospice lived about a month longer than patients who did not elect hospice care. Longer lengths of survival were found in four of six disease categories studied. There are also patients who improve to the point that they are no longer eligible for the hospice benefit; these patients may return to hospice care if they qualify later. Hospice care is expensive and will require co-payments. False - Hospice is 100% covered by Medicare and Medicaid and many private insurance carriers. All medicines Vol. 3 • No. 1
Thirty-six years ago the first hospice in the United States opened in Connecticut. Today, there are approximately 5,000 hospices serving more than 1.5 million patients in the US. However, the Medicare/Medicaid benefit is often underutilized because of misperceptions on the part of physicians, nurses, patients, and families. Hospice remains one of healthcare’s best-kept secrets. Test your knowledge regarding the Medicare Hospice Benefit.
and medical equipment related to the terminal diagnosis are fully covered. Coverage also includes oversight by a medical director in conjunction with the patient’s primary physician, as well as the hospice team, which consists of nurses, social workers, chaplains, hospice aides, 24-hour on-call nursing service, and much more. If I choose hospice I am giving up, and I can no longer go to my physician. False - Hospice is not about giving up. When a cure is not possible, much can still be done to manage the pain and symptoms that impact the quality of living. With a hospice team in place, you may not need to see your physician because the hospice nurse remains in contact with your primary care doctor as well as the hospice medical director. However, if you feel a need to go to the doctor, the team can help you make arrangements. While under the care of hospice, patients agree to forgo aggressive care. If at any time a patient wants to pursue aggressive treatments, s/he has the right to discharge from hospice, and s/he will not be penalized if s/he chooses hospice at a later date. Hospice is only for cancer patients. False - Hospice care is available for all end-stage disease, including congestive heart failure (CHF), pulmonary disease
(COPD), Alzheimer’s, ALS, stroke, and other illnesses, as long as the patient has a prognosis of six months or less. Patients must meet the criteria outlined by Medicare to be eligible for the hospice benefit. I want to focus on life and living, and hospice is about death. False - Hospice is about life! Hospice is about choosing how you want to live and planning ways to manage pain and symptoms so you can set your own priorities and live as fully as possible. Hospice provides a team to help you and your family cope with the physical, emotional, social, and spiritual aspects of a terminal illness—a team that is trained to listen to your needs and help you achieve your care goals. Opening its first hospice in 1979, Hospice Compassus is a family of communitybased hospices. Our nationwide network is a vast resource benefiting both patients and families. Hospice Compassus has a common culture around three core values: compassion, integrity, and excellence. Our primary goals are to provide the highest quality hospice care and service in every community in which we operate, and to be both the hospice provider of choice and the hospice employer of choice. For additional information, please visit us at www.hospicecompassus.com.
the shared experience
One Year MARCH 9, 2010
T By Linda Tillery Mother of former patient Columbia, Tennessee
oday, March 9th, it has been one year since we said the last earthly good-bye to our daughter, Wendy. I have counted the 9th of each month since that day, that sad Monday of last year. Buttercups were blooming, and it was warm and the sun was shining. Not a day to die, but a day to want to bloom and grow and live. Yet that was the day we had to let her go, that is the day she left us clinging to each other and crying and wondering what we were going to do now, now that she was gone. Surviving the first month was a blur. The wound so raw, the tears so fresh they flowed so easily; it seemed the days melted into each other. Friends called, they sent flowers and sometimes pies or casseroles. I was allowed to wallow in my sorrow. My family stayed a little while, filling a few days with busy things, things that took my mind away from the pain. But once they left we were alone again, and the nights got longer and sleep became an elusive thing and my bedside lamp burned all night long as I tossed and turned, sobbing into the pillow. Then, just as predicted, I became angry when I could not find answers to the question, “Why?” and it all seemed so senseless and cruel. For a God somewhere to sit on a throne and decide who is going to live or die—that just didn’t give me peace. I could not feel loving arms around me; and when someone would make the remark that I heard so often, “God doesn’t give us more than we can handle”, I could feel the anger like bile rise in my throat. I stayed in this mode of thinking through several of the following 9th’s of the month. And as each 9th passed, I got harder and harder, going deeper and deeper into myself. Deeper than I have ever been before. Mourning and grieving, grieving and mourning, looking for someone, something to blame. I questioned every belief I ever had and bravely accused God, screaming abuses at Him for causing all this pain. It felt really good to vent my frustrations; and in my righteous anger, my target was an almighty
God who had turned His back on me and my family, taken my daughter when she should have been spared to live her life and raise her children and worship the God she believed in so strongly, even to the end. I had never heard her blame God for her illness; but I did, and I did it proudly. The anger finally burned itself out and left the charred remains of my own identity, a mass that I did not even recognize. Somehow within that mass there was a tiny light, or seed, or something that sprouted its way to the top of that blackened heap. I saw it the very moment it broke to the surface, reaching tiny tentacles towards the sun, the fresh air, the moon; and it breathed deeply, and there was a pulse beat and a cry, like a baby, new born. And I started to live again. I guess that may have been the day I started to heal. The new thing that is growing looks a lot like my old self on the outside, but so much different on the inside. I can see a broader picture of life, death, the universe, and God. I had put boundaries on everything, life, the end everyday COMPASSION
being death, death— the end—being separation. The universe had its boundary as the sky. And God, well, without realizing what I had done, I had even put boundaries on God. I put Him on the throne and saw Him sitting there, waiting, I guess, for me to come and ask Him for something, or to thank Him for something, or in desperation throwing my burdens at His feet, telling Him to fix it because I could not, and expecting Him to fix it, which meant to answer the prayer I prayed. Inside my new self I see no boundaries. I know that little light or seed is there—it is there for eternity. Maybe it is called my soul. It will live, no matter what happens to this body. It is the part of me that is eternal. It is indestructible. It will survive the death of this body. Now I do not see the end of life as death, but rather see death as being a different beginning. I do not see God on a throne, but everywhere and everything. I do not know what happens once that little light, or seed, or soul hatches out of this body to be free, but I do not think there will be boundaries. My daughter did not die so that I could see this new broader meaning to life, but I saw this because she died. Her death caused me to look deep into the part of me that had been just lying there. I could have died with her, and at times that is just what I wanted to do. One year later, I have not ceased to miss her or thought of her less often; and I dream some nights that she is still with us, laughing. And I awake with her face in my memory and tears on my cheek. How I wish she were still here with us! How I wish her death was a horrible nightmare and I will wake up to find her calling me, or stopping by to say hello. Nothing will ever take her place; no one can fill the void she left. Time heals the raw wound; the bleeding stops, but the scar will always be there. Weeks go by, then months, then a year. One year. Today I mark the day, I celebrate her life—my daughter, who taught me so much in life and is teaching me so much in death. We celebrate together, she and I.
Thank You My feelings now I open To you my fellow friends To walk these healing paths together And try our hearts to mend. It’s hard to put into words The feelings that we feel For one day they are normal The next day they’re not real. And so I put my deep, deep pain Into the words of grieving So you my friend can understand And find yourself believing That healing can come to you In spite of your deep sorrow And one day you will find yourself With hope for tomorrow.
Many weeks ago we started these classes together. We shared our losses, our stories, our sorrow, and our tears. I want to thank you all for your help and support in this difficult journey. Mostly I want to thank you for your hugs and love. They will remain in my heart forever. May we all continue this healing path as we go on in life. May God bless you always. Bereavement Support Group Member Yuma, Arizona
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Dream Comes True for Local Hospice Patient By Dale Willis Volunteer Coordinator — Columbia/Jefferson City, Missouri
Right: Erna Gess at the St. James United Methodist Church. Below: Chirsty Whitworth, Hospice Aide, and Erna.
t had been five years since her first “sick spell” had kept 90-year-old Erna Gess from attending church, and she hadn’t been able to go back since then. Now, with a prognosis of only several months or less to live, it seemed as though her dream would never come true. Erna just wanted to attend church one last time. As a long-time member of St. James United Methodist Church in Fulton and a person of unmovable faith, this was perhaps at the top of her personal “bucket list.” Enter Christy Whitworth. Employed by Hospice Compassus, Christy is the Hospice Aide who visits Mrs. Gess each Monday, Wednesday, and Friday afternoon to provide personal care. Not only does Christy bathe Mrs. Gess, fix her hair, and do whatever she can to make her feel comfortable; she also takes time to care. “I love Christy!” says Erna. “She is so kind and compassionate, and she’s never in a hurry.” When Christy learned of Erna’s desire to attend church, she consulted with her colleagues at Hospice Compassus, who had recently developed what they call the “Dream Team.” The purpose of the Dream Team is to turn dreams into reality for their hospice
patients, in order to bring a sense of fulfillment as they approach the end of their lives. Not long afterward, Christy announced to Erna that she had made special arrangements to take her to church. With a great deal of excitement and anticipation, the frail, elderly woman chose Sunday, September 5, as a guest minister was to be preaching that day. That sense of excitement kept Mrs. Gess awake nearly the whole night of September 4. When Christy showed up the following morning, she found Erna with curlers in her hair, eagerly waiting to get the show on the road. Erna’s daughter, Ann, met them at church. And to Erna’s delightful surprise, Tammy Bartley and her husband were also there, among the members of the small congregation.Tammy is a volunteer with Hospice Compassus who visits Erna each Thursday afternoon, providing companionship and emotional support. “Tammy is such a blessing!” remarks Erna, who loves gospel hymns. “Once, Tammy sang me to sleep with a good ole Methodist hymn. And when I woke up, she was gone….” With assistance from a steroid medication especially prescribed for the occasion, Mrs. Gess managed to muster enough strength to make it through the entire church service. Tammy Bartley recalls the event: “Erna was dressed to the hilt, and she looked stunning!” With eyes full of tears, Erna stopped the preacher at one point so she could introduce her daughter, and to thank her hospice “family” for all they had done for her. Erna says it was simply a beautiful day. And with a twinkle in her eye, she indicates the minister referred to her as his only “Amen member!” After church, Erna took Ann and Christy out to lunch at the Highway 54 Diner in Fulton. When she finally made it back home, and when all was said and done, Erna announced, “Now I am ready to go!” And with that, she went to bed for a long, well-deserved nap.
Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive. — Howard Thurman
Bildung zu sprichst Deutsch (Learning to Speak German)
Going the Distance My View from a Mayan Temple
Our Colleagues and their Journey through Life Every day our Colleagues offer hope and compassion to the patients and families they serve, but they also do much more.The Bucket List is an opportunity for Hospice Compassus to highlight the accomplishments of our Colleagues and celebrate their achievements.
My father was born in Germany and lived in an orphanage for some time until he was adopted, at the age of eight, by an American family and came to live in the US. I have never met any of my German family. But I have always been curious about their life, language, and culture. In the interest of exploring my heritage, I started studying the German language just a few weeks ago. I have wanted to do this for years, but was always afraid that I couldn’t. I can’t believe how much fun I am having!
I have not learned enough yet to hold a real conversation. But I am learning to identify and describe things I see around me all the time. Learning another language has been a real mind-growing experience. It seems that the more words I have to describe ordinary things, the more interesting they become. Cassandra Hall Volunteer Coordinator McCom b , Mississipp i
I have to share with you that our very own Catherine Pyle, in Houston, completed the San Antonio “Rock and Roll” Marathon...26.2 miles in November. And, she finished within the time to get recognized with a medal! This is her first marathon. WOO HOO!!! On my 50th birthday (not saying what year) I joined my daughter in Belize for a week’s vacation. She was working on a Mayan dig under the direction of Texas Christian University and decided I needed to see the sites. We journeyed to Tikal National Park in Petén, Guatemala (I found out later the local guerrillas liked to highjack tourist buses). I am pleased to say I climbed a Mayan temple, straight up, about 120 feet. What a fantastic view and one more site to check off my bucket list! I have also been to Berlin, Prague, Bern, Lucerne, Geneva, Interlaken, Annecy, Strasbourg, London, and I have another 50 years to get to the rest! Deborah Andrews Bereavement Coordinator Sp ringfie ld, Missouri
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Bucket List continued Wally’s World
Time has not hindered this feisty 90-year-old with the spirit of a teenager and the energy to match. What keeps him so young at heart? Perhaps it’s his love of music and his devotion to volunteering. You can find him most weekends at local senior centers and nursing homes, entertaining the crowd with his wit and his skill on the guitar. Wally’s musical career spans eight decades! He began playing the guitar at the tender age of 8; and by the time he turned 14, he had captured the spotlight performing with a traveling band. Soon he was touring the South with the group. With a baseball cap on his head and a permanent smile on his face, he lifts the spirits of all who see and hear him. His knack for story-
telling, intertwined with his musical ability, give credence to his star billing. Throughout his life, Wally has taught and inspired many successful musicians. Perhaps more importantly, he has taught many lessons in life. Age will never diminish his impact on others. Charles Dickens once said, “Every wrinkle is but a notch in the quiet calendar of a wellspent life.” What a life this incredible man has had and continues to have! With a twinkle in the wrinkles of his still-handsome face, he is a living example of the joy of being a volunteer. Lynn Dozier, Nurse Monroe , Louisiana
You’reNeverTooOld Okay, here’s a pic of me finishing the Des Moines Marathon on Oct 17th. I had hoped to dig out a better one, but I’m afraid I’ll never get it to you if I wail till I go through all the pics, so I’ll just send this one. Not a lot to say except that I’m a fifty-something breast cancer survivor and this was my first marathon - 26.2 miles. Felt good!! Jan Burback, Director of Sales Ce dar Rap ids , Iowa
“ThatWasMeWhen I Was Your Age!” I get to visit wonderful, wise elders every day of my job as a social worker. While visiting, I often admire the one, great photo they have of themselves when they were young adults. They often say “That was me when I was your age.” I would go home and look in the mirror at the ripe age of 32 and see the gravity beginning to set in and the grey hairs emerging, and I would immediately decide that my goal for my bucket list would be to get professional photos taken of my boyfriend and me. I wanted the photo like my patients have – with the couple sitting together and with no dated backdrop. A photo may seem like an odd bucket list, but not if you are me and my boyfriend, two people who always look like a deer in headlights when a camera is around. When
I reached my teenage years, and the greater ability to hold abstract thought, the camera became baffling and a bit frightening to me. I mean, who are you supposed to be pretending to pose for? Am I always supposed to look excited with a smile even though I don’t always feel that way? What is the “normal” facial expression I wear? I know an analytical mind can be so complicated and unnecessary when it comes to something so mild, but these are the thoughts I have to deal with! So on the day of picture taking, I was indeed nervous. Thankfully my boyfriend’s acquaintance took the photos of us and had the patience to put up with our many closed-eyed and confused pictures we took. Of course I had to ask a load of
questions such as, “What do I do with my hands?” “Should I smile?” “Do I look directly at you; where at your eyes or your nose or your whole face?” She would say “Just act like you normally act with each other,” and I replied jokingly, “So you want us to argue?” After two hours, two dress changes, and 200 pictures later, I think we have 3 workable photos! I am very relieved to have that experience over with; also I am excited to hang the photo that will be the marker of my young adulthood, where I can say 40 years later, “Look at me when I was younger!” Jessica Wiley, LCSW, Social Worker Lafaye tte , Louisiana
Just Keep Running... My main reason for running is to stay in shape, but it gets boring. So I put a toe outside my comfort zone by signing up for different races, and this gradually led up to the marathon. I did the first one to prove I could do it and survive. I did the second one because I didn’t want to be a “one and done” marathoner. Also the medals are so cool, I wanted another so each of my kids could keep one to remember how tough and determined their mom can be. I took up marathon running at 45 years of age completing my recent one just shy of 48. It might seem funny that I started in my 40’s, but sometimes you need to challenge yourself way beyond what you know you can do to see what you are made of. I am not a good runner but I keep moving forward. Once you
send in your money for the race and your name is on the official list, your pride is at stake. This becomes a great motivator to do the workouts. People know! I ran the Detroit Marathon on Oct. 17 2010. It is a neat race because you cross over the Ambassador Bridge into Canada then come back to the U.S. through the tunnel. When you’re finished, you’ve run in 2 different countries and recorded an underwater mile! I trained for 18 weeks to get ready, but I was running fairly consistently before that. (I did a ½ marathon in April.) It’s a big commitment and you have to plan your week around your workouts. One by one the long runs get checked off your calendar, and you look with amazement at the total number of miles you have run—close to 700! You start believing that you can actually do this!! There are 3 weeks during the training that
are brutal. You are sure you won’t make it, but after completing each horrific workout you start to discover plenty of things about yourself. A lot of brain battles go on when you are pushing yourself this hard. Like: “Why am I doing this, this is really hard, natural childbirth was easier than this.” But then you change your thinking to: “I am a beast, I am not a sissy, I can do this, I will finish.”My goals are simple: to finish and not stop! If I end up running well, that is a bonus. Little can compare to the natural high you are on after a marathon, and it lasts for weeks! I cried at the end of both of my marathons, because you get so overwhelmed with the emotions of what you just accomplished. I’m thinking of something cooler for my 50’s! Kim Bodenmiller, Volunteer Coordinator De troit, Michigan
Taking the Time In April 2008 my mom entered hospice care following a lengthy battle with COPD; she died on August 23rd that year. I was honored to help her on this journey. She and my dad had been married 57 years, and he was in very good health for an 87-year-old man. In May 2009 he suddenly became ill with an aggressive cancer in his parotid gland. He entered hospice in July 2009 and died a few weeks later on August 18th. I was his primary caregiver for those few months; and while it was my most difficult responsibility ever, it was an honor to care for him. My mom and dad had been very fortunate to travel numerous places, as my father was retired from the Air Force Reserves after serving as a fighter pilot in WWII. They went to Hawaii, Germany, Iceland; and many other places, but one of their favorites trips was to Alaska. These personal hospice experiences made me realize that life doesn’t wait, and you have to make the memories and enjoy these experiences while you can. Following my dad’s death, my husband and I decided to take our family on an Alaskan Cruise. We took our daughters Jessica and Brittany, our son Josh and his wife Jennifer, and
Vol. 3 • No. 1
The Rimas family: Jessica, Dennis, Brittany and Edie at the Mendenhal Glacier.
our grandbaby Dakota with us. It was truly an amazing, life-changing experience. We visited the Mendenhal Glacier, we went dog sled riding, and we saw some of the most beautiful scenery ever. I can honestly say this was a “bucket list dream” for all of us and one we will never forget. If I had not been supported by the hospice staff and able to help both my parents during this very difficult journey, I would never have taken the time or spent the money on a “life experience” such as this trip. We had talked about doing this when my parents were alive,
but we had a dozen reasons why we never did it. I think the lesson I learned during my parents illnesses was that life is short and you never know when your “personal endof-life journey” is going to come. We were so blessed to be able to go on this trip and to get to share it with our children and granddaughter. I have a few more things on my “bucket list,” and I intent to make sure I accomplish them also! Edie Rimas, RN, Executive Director Colum b ia/Tullahom a, Te nne sse e
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