Compassion A Publication of Compassus
Vol. 8 Issue 1
â€™TIL DEATH DO US PART
FACING THE CHALLENGES
Caregiving With guidance, you can learn where to find assistance, what questions to ask and how to find emotional support.
BEFORE HOSPICE CAME TO MISSISSIPPI
Compassion Everyday Compassion is published periodically by Compassus. Please address any comments or questions to: Editor, Everyday Compassion Magazine, Compassus, 10 Cadillac Drive, Suite 400, Brentwood, TN 37027
Carol Fite Lynn Director of Communications
We Want to Hear from You You have plenty of stories to tell and we’d like to hear them. Is there a particular patient who was extra special? Does your program have wonderful pet therapy? Do you know of a caregiver who has found a unique way to manage the demanding work of caregiving? We’re working on the next issue of Everyday Compassion and we’d like you and your stories to be part of it. We also welcome your questions, comments, feedback, and suggestions. Email us at firstname.lastname@example.org. And don’t forget: • We love our military veterans, and we always want stories about Compassus veterans. • Compassus colleagues have some of the biggest hearts around, and we want to share your uplifting Dream Team stories. Tell one on yourself or brag about a colleague. • Nominate your medical director to be chosen for our Physician Spotlight.
ASSISTANT EDITOR Sloane Sharpe Director of Branding
CONTRIBUTING WRITERS Michael G. Boston Chaplain Butte, Mont.
Deborah Musick Chaplain Muncie, Ind.
Terese Buckley Social Worker Billings, Mont.
Monica Perez Certified Nursing Assistant Yuma, Ariz.
John J. Choi Bereavement Coordinator Placentia, Calif.
Glenda Sinclair RN, Executive Director Mid-Mississippi Program
Carol Davis Locomotion Creative
Scott Slade Editor, Times-Post Pendleton, Ind.
Mike Fritz Bereavement Coordinator Central Texas Rev. Dr. Cathy Genthner Chaplain Scarborough, Maine Heather Hendrickson Certified Nursing Assistant Monett, Mo.
Johanna Turner Retired 35-Year Hospice Professional Washington, D.C. Joseph S. Wadas Bereavement Coordinator/ Chaplain Savannah, Ga.
Mario-Seth Morales Bereavement Coordinator Placentia, Calif.
CONTRIBUTING PHOTOGRAPHERS Kevin Vandivier Vandivier Productions
CREATIVE and LAYOUT
Locomotion Creative, LLC
Dear Colleagues, Friends and Associates, The word “hero” typically is used to refer to someone who has performed a dramatic act that garners widespread awe and admiration — the firefighter who rescued someone from a burning home or a passing motorist who pulled car wreck victims from a vehicle before it exploded. Such acts definitely are heroic, but we at Compassus know heroes who work quietly and without fanfare. They’re not looking for awe and admiration, but rather to better someone else’s life, especially if that person is in his or her final days and particularly those who are affected by the loss of a loved one. They are caregivers. They are, as one writer in this issue of Everyday Compassion described, “professional caregivers, family members and friends mindfully, creatively, tirelessly infusing dignity and meaning into patients’ final days.” You’ll find them gently and patiently holding a spoon for a mother or father who can’t feed themselves anymore; working through their own exhaustion with a smile on their face for their loved one; and looking beyond the patient’s fear and frustration to see the person that was, before illness took hold. Many family members are unexpectedly plunged into a caregiving role without having any idea how to do it or what to expect, so they have to learn as they go. Many times they don’t ask questions because they don’t know what to ask. Stories in this issue share what to expect, where to find assistance, how others have coped, where to find emotional assistance and how caregivers can take care of themselves during this stressful time. We hope you find it helpful. As always, we are interested in your reaction to our words, and we are eager to hear and share your stories. Sincerely,
Copyright 2017 © Compassus. All rights reserved. No part of this periodical may be reproduced in any manner without the written consent of Compassus. e-mail comments to: email@example.com
James A. Deal Chief Executive Officer
TABLE OF CONTENTS ON TOPIC
Caregiving Many people are unexpectedly plunged into a caregiving role and frequently don’t ask questions because they don’t know what to ask. But with guidance from those who know, families in the midst of caregiving can learn where to find assistance, what questions to ask and how to find emotional support.
Lantern release honors patients’ memories Remembrance is part of annual reunion.
’Til death do us part Rituals, such as wedding vow renewals, bring joy to a sorrowful time.
Finding renewal Combatting the emotional, physical, financial and spiritual toll that caregiving can take.
Loving care A hospice social worker honors those who bring dignity and meaning to the dying.
Facing the challenges An authentic look at what it’s like to be a caregiver for a loved one.
Emotional landmines How to recognize and handle the emotions of caregiving.
Qualities of a caregiver The qualities of a caregiver are many.
A hospice chaplain’s own brush with death created better understanding of her patients.
A Compassus executive director knows firsthand how difficult endof-life care can be without the help of hospice.
A caregiver’s challenge with cancer
Before hospice came to Mississippi
Every member of a hospice care team brings their own ingredient of caregiving.
Fellow travelers Bereavement coordinators show how hospice teams aid families in crisis.
Love for her work frequently shows up in a Compassus CNA’s poetry.
A CNA shares a loving poem she wrote for her grandmother.
A hospice bereavement coordinator recalls how a special patient was first and foremost a caregiver.
Recipe of care
‘It was an honor to serve you’
‘The hands I hold’
A caregiver until the end
In Every Issue
Making good time Being aware of a patient’s limited time can provide deep insight into his or her life.
The Dream Team Meeting the ‘King of Rock and Roll.’
By the Numbers Caregiving in the United States.
The List A directory of resources to aid caregivers.
Physician Spotlight Featuring Kurt Merkelz, MD, Senior Vice President and Chief Medical Officer for Compassus.
Compassus volunteers inspired by mission trip to South Africa Medical volunteers sent to South Africa by Compassus to help Living Hope, the company’s sister hospice program there, called the experience “life-changing” and “a privilege.” The Compassus team — three physicians, four registered nurses, a social worker, hospice aide and bereavement coordinator — spent a week in Cape Town, South Africa, educating and assisting the Living Hope staff.
The Living Hope participants were: • Michelle Berry, MD (San Antonio, Texas) • Megan Cahil (North Hampton, N.H.) • Karen Duncan (Columbia, Mo.) • Chad Dziedzickie (Colton, Calif.) • Laura Germann (Springfield, Mo.) • Scott Graham, DO (Norwood, Mass.) • Linda Hester (Gulfport, Miss.) • Maura Lipp, MD (Columbia, Tenn.) • Tyrone McDaniels (Newtown Square, Pa.) • Nichole Rowe (Manasquan, N.J.)
Since partnering with Living Hope in 2011, Compassus donates monetary aid, medical supplies and healthcare expertise to support Living Hope’s healthcare and hospice services in Cape Town’s impoverished communities. “I’ve been on several mission trips, but this was truly a life-changing experience,” says Maura Lipp, Palliative Care Medical Director at Compassus– Columbia. “I witnessed compassion and love like I’ve never seen from my amazing Compassus family and the miracle workers at Living Hope.” Living Hope, a ministry-based nonprofit, offers healthcare, counseling and education to more than 200,000 underprivileged Cape Town residents. Living Hope, with programs focusing on improving general health and hospice care, HIV/AIDS treatment and prevention and economic empowerment, provides inhome visits, medical clinics and a 22-bed inpatient hospice center. “I am grateful to Compassus for this opportunity to see the impact Living Hope is having in South Africa,” says Laura Germann, RN case manager for Compassus–Springfield. “Through education, prevention and loving people, they truly are bringing hope and breaking despair. It was a very inspiring and lifechanging trip.” “My time on the medical mission trip with Compassus was amazing,” says Chad Dziedzickie, a bereavement coordinator for Compassus–Colton. “It was a privilege to be part of a team of people with the hearts of servants, to serve the young and old in poverty and in need.” 2 Everyday Compassion Vol. 8 Issue 1
Turning memories into treasured keepsakes A unique program at a Compassus site captures the thoughts, memories and philosophies of hospice patients and puts them into a keepsake book to be cherished by their families for years to come. The Life Journal Project is an initiative of Compassus–Albuquerque, in which each patient who wants to participate is given a life journal. “At Compassus, we recognize the power of looking beyond a patient’s condition and into the stories they carry with them,” says Maria “Patsy” Garcia, volunteer coordinator at Compassus–Albuquerque. “Often when a patient enters the final chapter of his or her life, they spend time reflecting on their experiences and are eager to share them with us.” In 2016, Compassus–Albuquerque developed six books as part of its Life Journal Project. The initiative is led by the program’s team of volunteers, who provide companionship and a listening presence to patients and their loved ones. During visits, volunteers, who have received training for helping patients recall memories, take notes and record conversations with patients who choose to participate. These conversations are then turned into books that are presented to the patients and their families. “The books become treasured keepsakes for families and future generations,” Garcia says. “Many times they are surprised to learn things about their loved ones they hadn’t known before, making this project that much more special.”
er Zentn n ly o r Ca d ell Live A Life W
Interested in volunteering for Compassus? Volunteers interested in assisting hospice patients and their caregivers can help in three areas, which offer a wide variety of tasks and activities.
Patient Support Volunteers provide companionship to the patient and respite for the caregiver with friendly visits, running errands and more.
Bereavement Volunteers support families and friends of deceased patients by assisting with grief support groups, writing letters, making calls and more.
Administrative Volunteers help the hospice staff, often by helping with light office work, making deliveries and more.
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IN MEMORY SCOTT SLADE, EDITOR OF THE TIMES-POST IN PENDLETON, IND., TAKES US TO A SPECIAL MEMORIAL SERVICE.
LANTERN RELEASE HONORS LATE HOSPICE PATIENTS Remembrance is part of annual reunion for families
Kelly Bishop, RN, a case manager with Compassus, helps Connie Stiles release a balloon in Falls Park in honor of Stiles’ husband, Michael Stiles, who died in 2015. Scott Slade / Times-Post
About 40 people from about a dozen families gathered at Falls Park in Pendleton, Ind., in a clearing where there were no trees immediately overhead. That clear sky was important, as they were going outside to release memorial Japanese lanterns into the air, lifted up by the heat of a flame burning at the paper lantern’s base. “It just feels good standing here watching them float away,” said Elizabeth Driver of Muncie, who was there in honor of her late father, Dale Knotts. “It gives you time to think about the people that we’ve lost, not only the ones they helped us get through their passing, but the other ones we’ve lost through the years.” The people Driver referred to who helped her and others through the death of loved ones are the employees of Compassus, a hospice and palliative care provider with locations in Muncie and Indianapolis. Compassus chose Falls Park for its first program involving the release of the flame-retardant, biodegradable
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lanterns, upon which family members were able to write their names, the names of their loved ones and any messages they wish to send skyward. “We were trying to think of something meaningful to do,” Compassus Chaplain Tim Overton said. The staff and patients’ families get very close because of the nature of the services they provide, and annual gatherings provide an opportunity to reconnect. Compassus has conducted previous gatherings at their individual locations, but this year the staff wanted the services to be even more special, and they succeeded, he said. “It was just a good time of reunion and remembrance,” Overton said. Carol Lingle, whose husband, Garland “Pete” Lingle, died earlier in the year, agreed it was a special time. She and her daughter, Jeanne Luttrull, joined the group to honor their husband and father. Lingle said she liked “Just the thought of putting it (the lantern) up there with him, with his name on it. We were married 61 years, and it’s hard.” Her daughter said she has never seen any service like it before. “I think it’s very nice,” she said. Scott Dalton from Yorktown, who was there honoring his father-in-law Michael Stiles, said he appreciated the event. “It is nice,” he said, “That they put something together for the families.” Reprinted with permission courtesy of the Times-Post (www.pendletontimespost.com)
THE DREAM TEAM THE STAFF AT COMPASSUS–COLUMBIA SURPRISES A PATIENT WITH A VISIT FROM ‘ELVIS.’
Cree Mason has always admired Elvis Presley, and often dreamed of what it would have been like to meet him. With that in mind, the Compassus program serving Columbia, Tenn., and the surrounding areas, recently planned a special surprise for this very special young patient. “Cree has multiple figures of Elvis and enjoys watching marathons of old Elvis movies,” says Betty Taylor, a Compassus nurse who has worked with Mason since July 2015. To honor his wish to meet the “King of Rock and Roll,” Compassus– Columbia scheduled a visit from a local Elvis impersonator to meet Mason at Maury Regional Medical Center, where he was receiving treatment. Mason’s mother Peggy worked with his Compassus nurses to plan the surprise visit by Chuck Baril, known as “Nashville Elvis.” And Mason was overjoyed to finally “meet” his music idol. “Cree is an amazing young man who has an outlook on life that very few possess,” says Sara Parker, another of Mason’s Compassus nurses. “He does not dwell on his hardships and does not blame anyone for his situation. I admire his strength and his willingness to live his life to the very fullest.” “When a loved one is battling an illness or disease, families and patients often focus solely on treatment, leaving behind dreams and aspirations their loved one once had,” says Edith Rimas, executive director of Compassus–Columbia. “Compassus is fortunate to have the opportunity to help patients fulfill these forgotten dreams and to bring happiness to those who are suffering.”
Meeting The ‘King of Rock and Roll’
The Elvis visit was an “amazing, beautiful gift,” says Michele Marbet, the facility’s clinical director of client services. “It has been an amazing blessing to be able to work together to care for Cree and his family,” she says. “The team here is wonderful, and this is just one of the patient dreams we have had the privilege to help fulfill.”
Cree Mason gets a surprise visit from Chuck Baril, known as “Nashville Elvis.”
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THE VALUE OF RITUALS THE REV. DR. CATHY GENTHNER, CHAPLAIN FOR COMPASSUS–SCARBOROUGH, EXPLAINS WHY SOMETHING LIKE RENEWING WEDDING VOWS CAN BE SO IMPORTANT.
“I wanted to renew our wedding vows because it was a way to publicly say that we still love each other and we are still a couple,” Beth says. “Glenn has given up on a lot of things because of his health but I didn’t want him to give up on our relationship. This renewal was important to me because I needed the encouragement at this time in my life. Even though he is in a long-term care facility, we still love each other and trust each other. He is my husband and I am his wife.” HAPPY TIMES
’Til death do us part
“This renewal was important to me because ... he is my husband and I am his wife,” Beth says.
As a hospice chaplain, I recently had the honor of officiating at a wedding vow renewal ceremony for one of our patients and his wife. Beth and Glenn said, “I do” again to one another at a long-term care facility in southern Maine on Oct. 20, 2016. The ceremony was like many weddings with flowers, cake, friends and a member of the clergy. The venue was non-traditional — Glenn’s room had been transformed into a wedding chapel for the special occasion. They were both able to say those precious words of commitment and loyalty to one another, affirming their marriage, which has weathered the storms and reaped the blessings of life.
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The couple was first married Oct. 4, 2003, by a justice of the peace at Portland (Maine) City Hall. Glenn got a job as a truck driver, driving to all parts of the United States. Beth accompanied him on many crosscountry trips and considers it one of the happiest times of her life. “I was able to go along in the tractor trailer and we had a blast. I was able to see some really beautiful parts of the country that I wouldn’t have seen otherwise, including the West Coast, which was breathtaking,” Beth says. “We grew closer over the years and then he became ill just a few years ago.” However, illness couldn’t stand in the way of love as Beth expressed to me a desire to renew their vows before Glenn passed. I wrote a traditional ceremony and arranged the time and date with the facility. Nicole, our hospice volunteer coordinator, took care of every blissful detail, from the flowers to the cake, to inviting guests. “The ceremony was a challenge at first because Glenn turned down many visits from volunteers just because he isn’t a social person and often doesn’t
feel very well,” Nicole says. “I wanted their renewal ceremony to be beautiful for both of them and to give Beth a warm memory of her beloved husband.” The ceremony was as beautiful as everyone had envisioned. “Once Rev. Cathy started reciting the vows, you could feel the love in the air. Beth would squeeze his hand during the ceremony and he would smile just a little,” Nicole says. “With each minute he got a little more comfortable and even started joking around a bit with his guests!” “I felt a great deal of gratitude in that moment that we could help two human beings who are hurting and give them a shared memory and experience during this painful situation,” Nicole continues. “Beth was so appreciative and I would guess that Glenn’s rarely seen smile was indicative of a successful renewal!”
of that ceremony lives on in the hearts of his wife and family. Beth will have her memories and photos of the ceremony to reflect on, following Glenn’s passing. “It meant a lot to me to have some of the residents and staff there, (and) it was important to me to verify to the staff, no matter what is going on, we are still a couple,” Beth says. “Glenn really enjoyed it. He was pleased that I suggested we do it. He needed the encouragement and the blessing from
Ritual is so important, especially in the last days of one’s life. Celebrating those milestones such as birthdays and anniversaries, even though they may be our last, take us gracefully along life’s journey to the end of the road. Ritual grounds us to who we are and what we mean to one another. “Love is eternal and rituals are important in every culture, symbolic of different stages in life and even more so as one of the couple is facing end of life,” says Rebecca, a social worker for the Scarborough office. “It is a very powerful reaffirmation of love for any couple and it can bring some joy to a time of life that can often be sorrowful.” This is not the first wedding vow renewal ceremony for me. I performed one a year ago at the same facility. That one was not as carefully planned out and was performed spontaneously at the request of the wife who was at the bedside of her dying husband with many children, grandchildren and other family members present. The timing was crucial. The husband died a few days later but the memory
The special ceremony included traditional vows, flowers, a wedding cake and invited guests.
the Lord that God loves us. This time we said our vows before a minister and it seemed to have so much more meaning.” Over 13 years ago, Glenn and Beth took their wedding vows seriously and literally. Their undying love for each other is a living commitment to their words they spoke at the marriage and renewal ceremonies, “in sickness and in health, ’til death do us part.” Everyday Compassion Vol. 8 Issue 1 7
THE REALITIES OF GIVING CARE
JOHANNA TURNER IS A RETIRED 35-YEAR HOSPICE PROFESSIONAL, HAVING BEEN ACTIVE IN BOTH PROGRAM ADMINISTRATION AND CONSULTING. NOW A PASTORAL CARE COORDINATOR AT A LARGE WASHINGTON, D.C., CHURCH, SHE PROVIDES AN AUTHENTIC LOOK AT WHAT IT’S LIKE TO BE A CAREGIVER FOR A LOVED ONE.
Caregiving at life’s end:
FACING THE CHALLENGES With an aging population and a dwindling pool of family members available to care for them, increasing numbers of Americans now find themselves in the role of caregiver. Much has been written about the significant challenges of caring for chronically ill family members or those with dementia, but the realities of caring for a dying loved one are unique and less understood. If you are a caregiver for someone in the final stages of life, you may recognize yourself in the following paragraphs and find benefit in the accompanying suggestions. ALONE AND EXHAUSTED
All caregivers experience isolation and fatigue. There is an unmistakable urgency in caregiving at the end of life, however, because time is short: “I can rest after this is over, but I want to do everything I can while I can.” You may not want to leave home today — or even take a long bath or short nap — because there may not be many days left.
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Moreover, care requirements are often staggering. The situation may change daily, or even hourly. Frequent medications, dressing changes, safety, toileting, feeding and emotional support seem to fill every moment. You want to do your very best and it seems important that you do it yourself, so you may be reluctant to make a place in that schedule for self-care, or to ask for help. Caregivers may be tempted to turn to food, alcohol, or to the drugs on hand for comfort. These go-it-alone weeks leave little time to grieve. Grief does not suddenly appear after a death; it begins with the first inkling that the one you love may not get well. When the busy-ness of caregiving shuts out grief, your emotional and physical health can suffer when it is finally faced. Accepting your indispensable role in this situation also means accepting the importance of your own wellbeing. You cannot know how long you will be caregiving, and if you are determined to see it through, self-care is part of your job each day.
Suggestions: • Make a list of tasks that others can do — shopping, providing nourishing meals, doing laundry, maintaining contact with others or just being in the house so that you can nap — and resolve to say yes when asked. • At least once each day, ask a family member or friend to help you with something. You may be doing such a good job that your need for help is invisible to others. • If you belong to a faith community, ask what help is available. Many such communities have individuals or teams that are dedicated to practical support. • Find out about your local hospice. Hospice professionals have the expertise to understand how long your loved one may live and can help you plan to manage this time. That plan may include in-home aides, trained volunteers and proven community resources.
It is no exaggeration to say that end-of-life caregiving, like raising children, is probably the most important thing you will ever do. This person that you love depends on you for the very quality of his or her life. Your actions are the difference between pain and comfort, between being agitated and being at peace. Tasks such as giving injections or suppositories, ostomy care or respiratory treatments seem daunting — and how do you shampoo hair when someone can’t get out of bed? None of us comes to caregiving with the knowledge and skills we will need. Feeling unprepared to do things you’ve never done before is understandably frightening. Many of us are afraid of the unknown. Our culture has kept dying out of sight, and few Americans have been present for a death. You may fear what might happen at the time of death, and you may also be fearful
• See your doctor. Take note of your own weight gain or loss, inability to sleep or increasing episodes of feeling like you are falling apart. Self-medicating with drugs or alcohol will decrease your capacity to provide good care and place both you and your loved one at risk. • Thoughtfully plan for your own nutritional needs at the same time you plan for “your patient.” A hospice dietitian can help. • Identify at least one person you can lean on, cry with and talk to about what is happening with your spirit. End-of-life caregivers often do not wish to burden others who are already sad, so it is good to speak with an outsider, such as a counselor or member of the clergy. Hospice social workers can fill this extraordinarily important need.
Johanna Turner is a retired 35-year hospice professional, having been active in both program administration and consulting.
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about your own capacity to handle it. Beyond the loss is an even greater, perhaps more frightening, unknown — your life without your loved one.
It’s not too late to create an advance directive if the one who is ill is mentally clear and can communicate with you.
Suggestions: • Get good information on what you need to do and an expert to teach you how to do it. A hospice nurse does this every day. Make sure that you have written information and 24-hour backup for questions that arise in the middle of the night, something that a hospice can provide. • Accept that you may reach your limit and that other options are available. Even your best intentions and a good support system may not be enough if care is complex and physically demanding. Most hospices can provide their expert care in nursing homes or assisted living facilities when care at home is not possible. • Learn what will happen when your loved one dies. Although every detail cannot be foreseen, experienced professionals like hospice nurses can tell you generally what to expect and what your loved one will experience. Many people have feared watching someone die, but with good preparation, find it to be a healing experience. • Decide if you would prefer to have others with you at the time of
death or if you want to be alone. Make a plan that ensures you can summon others on short notice. • Discuss what frightens you with someone who can address your specific concerns: a clergy person or hospice chaplain for spiritual worries; the doctor or nurse about physical changes; and a counselor or hospice social worker for fears about your own capacity to cope. • Think about how you will manage the first weeks after the death but delay other decisions about your future. You have too much on your mind and heart right now for long-range planning, even though you may feel a little panicky. Put it away for another day. THE COMFORTER-IN-CHARGE
Even as you have the primary responsibility for caregiving, your family and friends probably look to you for sympathy and support, as well: a parent needs to comfort the children while caring for the spouse; a daughter nurtures and provides solace to her father while tending to her dying mother. You have become the manager of this sad time for everyone, and you are really giving care in several directions at once. It is easy to get emotionally lost in this busy traffic circle of need. In the face of the distress around you, you may also believe that it is up to you to be the brave one. It is very difficult to bear this bravery burden and assure others that all will be well when you do not believe it and feel out of control, yourself. Suggestions: • Let other family members know that you are grieving and that you are getting help with these emotions. Set an example. • Gently protect yourself. It’s okay to say, “I know this is awful for you; we’re all struggling in our own way. I’ll try to help you but my first
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priority has to be taking care of Dad. I’m sure you understand.” • Accept how emotionally vulnerable you are rather than fighting it. Bravery — to the point of blocking or denying your feelings — is neither healthy for you nor a good model for those around you. • Identify a safety net, not only for yourself but also for others affected by this impending loss. Children’s friends (and their parents) and teachers need to know what is happening. Have a family meeting and recommend that each person think about whom he or she can turn to for understanding. The wider this circle of support extends, the better each of you can care for yourself and each other. Hospice professionals and volunteers can be part of that safety net. THE HARD DECISIONS
Caregiving at the end of life includes making decisions, some of which may seem unbearably hard. The challenge is to trust the information on which you must base these decisions and to trust your ability to make them wisely and lovingly. If the one who is ill can no longer make decisions or needs you to lead that process, you will probably need to decide when it’s time to stop aggressive, curative treatment and focus instead on comfort care. For many, this is an acknowledgment of mortality that has been kept at arm’s length, and it is not unusual for family members to disagree. An advance directive or a timely discussion — before decisions must be made — can make your life a lot easier. Even as the disease progresses and death seems not so distant, you may still face tough choices. Will another radiation treatment lessen the pain of bone metastases or will it be too burdensome? Do we treat this pneumonia with antibiotics or let the infection run its course? Do
we transfuse? Do we put in an IV or feeding tube? The issue of feeding and hydration evokes a strong and complex emotional response. From childhood, we are taught that being well nourished and drinking lots of water is important for just about everything. Especially for women, feeding those we love feels almost like it is part of our genetic code and is synonymous with “taking good care” of another. But you may be asked to stop feeding your loved one, by mouth or by artificial means, or you may need to do the asking at the time when nourishment becomes an uncomfortable burden rather than a benefit. This is an arduous decision.
Combat fear by getting good information on what you need to do and an expert to teach you how to do it. A hospice nurse does this every day.
Suggestions: • It’s not too late to create an advance directive if the one who is ill is mentally clear and can communicate with you, so get busy today. Hospices can provide this information.
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Accept how emotionally vulnerable you are rather than fighting it. Blocking or denying your feelings is neither healthy for you nor a good model for those around you.
• Conversations are just as important as documents, so start talking and listening. If it is difficult to raise the subject, start with, “Being with you has made me think about how I’d like to be treated when I am very sick. I wonder at what point I’d decide that a treatment is not making my life better and I would choose another path. Can we talk about this?” • … or a briefer conversation: “Tell me what is most important to you in the months ahead because I want to help make sure that happens.” • Get expert guidance on treatment decisions as the disease progresses. Physicians trained in palliative medicine and hospice professionals can help you find the answers to these questions. • Learn about how the body processes food and liquids as death approaches. Hospice professionals can tell you about care that does not cause discomfort and can support you in making difficult choices.
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FEELING ANGRY AND/OR GUILTY
During such an intense, emotional time, you may discover feelings that disturb you. Anger is a common reaction when life seems out of control, and you may be angry at doctors, your relatives or yourself. You may just be angry that your life is so difficult right now, and perhaps you feel guilty about these feelings. Or you may have guilty regrets about what you have or have not done. It doesn’t take much of a stretch to feel like a martyr. You have put your own life on hold to be a caregiver while others seem to go on with their lives. There are outpourings of encouragement and good wishes for the one in your care, and sometimes you feel invisible or like hired help: “You’re so strong, but I’m so worried about your brother.” Of course you want support for your loved one, but still … And that may be something else to feel guilty about. The thought that probably appalls you the most is the wish that can come
in the night after a long and difficult day, a wish for it all to be over. “Okay, death, get on with it. We’re all pretty tired here and we can’t see the end of this, and it’s just too hard. I’m not sure I can keep doing this and there is no one to whom I can hand in my resignation, so let me not hear breathing when I go back in the room …” Each situation is unique and not every end-of-life caregiver has these feelings. But if you do, it is a reflection of the fact that you are a human being who has reached the end of your emotional rope and you are afraid you will begin to fall short of meeting the challenges yet ahead, and it is past time to find — and accept — help. Suggestions: • Make physical outlets for your anger; find an opportunity to work out in a gym or make a place at home to harmlessly hit, rip or throw something. Almost any loss produces anger, and this anger grows from a loss of control and the impending loss of the one you love. It’s normal. • Make a list of the things that make you feel guilty. If you cannot discuss them with another, such as the hospice social worker, look at the list and consider how recent information and hindsight makes you secondguess yourself. Cross off the things for which you can say, “this was the best I could do with what I knew at the time.” Forgiveness is for the remainder of the list. • If your faith has been an important part of your life, talk to your clergy person or a hospice chaplain about your obstacles to forgiving others and forgiving yourself. • Consider that your readiness for death to come is a sign of your acceptance of its inevitability as well as your own exhaustion. Seek additional physical and emotional support from friends and professionals. Hospices offer inpatient respite care to allow family caregivers some time for rest and renewal.
Finally, your caregiving situation is medically, emotionally and spiritually unique. Well-meaning friends will share their stories, but do not accept comparisons that cause you distress. Know that thousands of people share your struggle at this moment, and you are all giving an amazingly complicated and wonderful gift. Reprinted with permission from the American Hospice Foundation (americanhospice.org)
Create physical outlets for your anger; for example, find an opportunity to work out in a gym.
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MIKE FRITZ, BEREAVEMENT COORDINATOR FOR COMPASSUS–CENTRAL TEXAS, ENCOURAGES CAREGIVERS TO AVOID BURNOUT.
Once a caregiver finds a source of renewal, such as gardening, then he or she needs to create the time, energy and resources to keep returning to that well.
Finding renewal Caregivers typically give their all — 100 percent — to their loved ones who need help. They find their joy, their refresher, their drive through the very help that they offer. But the desire and work required
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to take the best care possible of a loved one can take its toll emotionally, physically, financially and spiritually. They may struggle in all areas as they strive to renew, refresh and continue on. How does one keep from giving all and not having a way of refreshing the wells that one draws from? Is there a way to regenerate these areas of a caregiver’s life? Is there a way to refill one’s desire to continue to help once that fountain is low or almost empty? One of the signs that a caregiver is “running dry” is when they begin to notice their actions and thoughts become different, and they say to themselves or others, “What is happening to me?” When this occurs, burnout may not be far behind. Renewal can come from most anywhere, so it’s important to find the one or two ways that work best. Some may choose to watch a movie, read, take a walk or drive, or go to lunch with a friend. Others have chosen to immerse themselves in hobbies or creative projects, such as making jewelry, knitting, sewing, gardening, writing or woodworking. Once a caregiver finds the way that best fits, then he or she needs to strive to have the time, energy and resources to keep returning to that well. It’s important for them to hear and understand the phrase, “A fountain that continues to give and never gets refilled runs out.” Having a refresh or refill is critical to everything that a caregiver does. One cannot be an effective caregiver if one is burned out, leaving no desire to continue. Renew, refresh, step back and take a caregiving time-out as much as possible. Because what’s good for the caregiver will, in turn, be good for their loved one.
BY THE NUMBERS
Caregiving in the United States 85% 60% The majority — 60 percent — of caregivers are female.
49.2 The average age of caregivers is 49.2 years.
7% About 7 percent of caregivers are 75 years of age or older.
34.2 million About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.
24.4 On average, caregivers spend 24.4 hours a week providing care to their loved one.
32% Only 32 percent of caregivers report their loved one gets paid help from aides, housekeepers or other people paid to help them. One in three caregivers have no help at all — paid or unpaid.
About 85 percent of caregivers take care of a relative, while the remaining 15 percent care for a friend, neighbor or other nonrelative.
23% African-American caregivers are more likely to care for a nonrelative than all other race/ ethnic groups — 23 percent vs. 13 percent.
22% About 22 percent of caregivers feel that their health has gotten worse as a result of caregiving.
Source: “Caregiving in the U.S. 2015” conducted by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.
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TERESE BUCKLEY, SOCIAL WORKER FOR COMPASSUS–BILLINGS, HONORS THOSE WHO HELP BRING DIGNITY AND MEANING TO THE LIVES OF THE SICK AND DYING.
“I find my work hopeful and inspiring as I witness the profound and tender ways our patients are often cared for through their final days.”
As a hospice social worker, people often say to me, “I could never do what you do.” I usually respond that there are a great many jobs I would be ill suited for — school bus driver and computer programmer are two that readily come to mind. Still, their words remind me that I am so fortunate to have found work
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that calls my name, and seems to use many of my inherent strengths. Contrary to being depressing, as many seem to think, I find my work hopeful and inspiring as I witness the profound and tender ways our patients are often cared for through their final days. I am reminded of an elderly spouse caring for her husband with Alzheimer’s in their home. She would dress him each day in pressed khakis and plaid shirt, his belt buckle displaying the U.S. Navy insignia honoring his World War II service, and they would go to McDonald’s for coffee and cookies each afternoon. The effort was significant — up and down the stairs, in and out of the car and the restaurant — but she believed that he benefited from these outings: a bit of fresh air, a change of venue, a midday treat and the feeling that he was still a part of the larger world. Another patient comes to mind — a middle-aged woman with early onset Alzheimer’s, living in a personal care home. She had lost her ability to speak, to smile and to make eye contact. Her husband visited twice each day to feed her, patiently encouraging her with each bite, taking an hour or more for this challenging task.
Professional caregivers, family members and friends mindfully, creatively and tirelessly infuse dignity and meaning into patients’ final days.
Last Christmas when the facility’s staff put up their tree, a worker confided in me that the husband had hung envelopes with each caregiver’s name on its branches, with crisp $100 bills tucked inside, as tokens of gratitude for the attentive and gentle care this small facility provided his wife. When I began my hospice career more than seven years ago, one of my first patients was a woman who no longer claimed connections with anyone in her family. Living out her final days in an assisted living facility, our team members were her only visitors. Soft-spoken and private, she never shared the stories that had led to this isolation. Upon her passing, the administrator and facility caregivers held a memorial service attended by her co-residents, their staff and our hospice team. There was music, cake, flowers, stories and photos as this quiet, humble life was remembered, honored and celebrated by those who had come to care. There are many more stories I could tell. My work brings me face to face with acts of such quiet heroism. I witness professional caregivers, family members and friends mindfully, creatively, tirelessly infusing dignity and meaning into patients’ final days. While every major world religion identifies caring for the sick and dying as a basic value central to their beliefs, it is work that is frequently undervalued and underpaid. And it
is hard. Professional caregivers may frequently encounter needs beyond their abilities to fill. Family caregivers are often isolated and exhausted as their days and nights revolve around their loved one’s growing needs, bewildering roles and their own grief. And yet each morning, they begin again. Their humble, noble efforts are nothing less than the work of the human heart. Indeed, when Mother Teresa said, “We can do no great things. Only small things with great love,” I think she had caregivers in mind. Everyday Compassion Vol. 8 Issue 1 17
JOSEPH S. WADAS, BEREAVEMENT COORDINATOR AND CHAPLAIN FOR COMPASSUS–SAVANNAH, OFFERS WAYS TO RECOGNIZE AND HANDLE THE EMOTIONS OF CAREGIVING.
EMOTIONAL LANDMINES 5 stress-fueled feelings and how to weather them
Anger is a common and healthy emotion. For some people, it is natural to outwardly express their anger; however, no one is never angry. How to cope: Rather than trying to avoid anger, learn to express it in healthy ways. Simple deep-breathing exercises can channel mounting anger into a calmer state, for example. Ask yourself if there’s a constructive solution to situations that make you angry: Is a compromise possible? A sense of humor is a great way to ease the tension of stressful situations. 18 Everyday Compassion Vol. 8 Issue 1
Caregiver grief is real and is a healthy and normal reaction to any kind of loss. How to cope: Know that your feelings are normal and natural. Allow yourself to feel sadness and express it to your loved one as well as to supportive others; pasting on a happy face belies the truth and can be frustrating to the person who knows he or she is ill or dying. Make time for yourself so that you’re living a life outside of caregiving that will support you both now and later.
Guilt is virtually unavoidable as you try to “do it all.” Caregivers often burden themselves with a long list of “oughts,” “shoulds” and “musts.” Through these lists, caregivers can place unrealistic expectations on themselves and others. How to cope: Whenever you experience guilt, ask yourself what’s triggering it: A rigid “ought?” An unrealistic belief about your abilities? Recognize that guilt is virtually unavoidable. Because your intentions are good but your time, resources and skills are limited, you’re just plain going to feel guilty sometimes. So try to get comfortable with that gap between perfection and reality instead of beating yourself up over it. Pat yourself on the back for doing the best you can under the circumstances.
Protecting yourself is good — to a point. When you’re doing so much, it’s only natural to bristle at suggestions that there might be different or better approaches. This is especially true if you’re feeling stressed, insecure or unsure, hearing comments or criticisms by others or reading information that’s contrary to your views. It can be very natural in these circumstances to be defensive. How to cope: Try not to take everything you hear personally. Instead of immediately getting cross or discarding others’ input, vow to pause long enough to consider it. Remember the big picture. Is there merit in a new idea, or not? What you’re hearing as a criticism of you might be a well-intentioned attempt to help you and your loved one.
A little goes a long way, but sometimes we can’t turn off the fretting. Worry is often rooted in good intentions, love and wanting the best for your loved ones. Whenever we worry about the “what-ifs,” we provide a perverse kind of comfort to the brain: If we’re worrying, we’re engaged and show some control. Of course, that ultimately triggers more worry and upset because it’s engagement without accomplishing anything. How to cope: If worry is interfering with your daily routine or your nightly sleep, you may need to change your perspective. Is there another way to look at the situation that might be more productive? What is the positive side of the situation? Don’t be shy about seeking out a trained counselor to help you express and redirect obsessive ruminations more constructively. Everyday Compassion Vol. 8 Issue 1 19
IN WHICH EXPERTS PROVIDE TIPS, TIDBITS AND RESOURCES TO BETTER ASSIST HOSPICE PATIENTS AND THEIR FAMILIES
Caregiving resources Many caregivers are thrust into their role without any advance warning and they may not know where to turn for help. These resources can help caregivers address some of the issues that may be facing them, and help guide them so they and their loved one receive the best possible care. ALZHEIMER’S ASSOCIATION
Information and support for people with Alzheimer’s disease and their caregivers. Operates a 24/7 helpline and care navigator tools. alz.org 800-272-3900
This official U.S. government site for Medicare provides information about the parts of Medicare, what’s new and how to find Medicare plans, facilities or providers. Medicare.gov 1-800-Medicare
NATIONAL ALLIANCE FOR CAREGIVING
The U.S. government’s free information resource about Alzheimer’s disease and related dementias. Managed by the U.S. Department of Health and Human Services. Alzheimers.gov 1-877-696-6775
A nonprofit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The alliance conducts research, does policy analysis, develops national best-practice programs and works to increase public awareness of family caregiving issues. caregiving.org 301-718-8444
A community of supportive individuals caring for a family member or friend, who cares for members before, during and after caregiving. Create a free account to join daily, weekly and monthly chats and to connect with others who understand. caregiving.com 773-343-6341 ELDERCARE LOCATOR
This public service of the U.S. Administration on Aging connects you to services for older adults and their families. eldercare.gov 1-800-677-1116
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SOCIAL SECURITY ADMINISTRATION
A federal insurance program that, among other services, provides benefits to retired people and those who are unemployed or disabled. socialsecurity.gov 800-772-1213 VETERANS ADMINISTRATION
Support and services for families caring for veterans. Maintains a VA caregiver support line and provides programs available both in and out of your home. caregiver.va.gov 855-260-3274
THE ‘CARE’ OF CAREGIVING MIKE FRITZ, BEREAVEMENT COORDINATOR FOR COMPASSUS–CENTRAL TEXAS, HAS SEEN FIRSTHAND THE ABILITIES OF GOOD CAREGIVERS.
Qualities of caregivers C A R E G I V E R S
Concerned Able Ready Encouraging Giving Important Vital Energetic Reliable Sensitive
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THE REV. DR. CATHY GENTHNER, CHAPLAIN FOR COMPASSUS–SCARBOROUGH, MAINE, HAD A BRUSH WITH DEATH THAT CREATED BETTER UNDERSTANDING OF HER HOSPICE PATIENTS.
A caregiver’s challenge
The Rev. Dr. Cathy Genthner’s difficult cancer treatments helped to her understand her patients on a deeper emotional and physical level.
Two months after I had started working as a hospice chaplain, I was diagnosed with Hodgkin’s Lymphoma in the summer of 2011. As I drove around the southern Maine area visiting hospice patients who were diagnosed with having six months or less to live, I was struggling with facing my own death, depending on the progression of the cancer. As I underwent treatment involving nauseating chemotherapy and exhausting radiation, I was able to understand on a deeper emotional and physical level what many of my patients experienced as they reflected on illness, life and impending death. What would people remember about me and did my life make a difference? Will the death be painful and how long will it take? Will my father and son be all right as they grieve and go on with their lives? What will heaven be like? Fortunately, these questions still remain unanswered as my cancer treatment was successful. I remain cancer-free, having recently passed the five-year milestone. However,
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this brush with death helped me to understand more intimately what many of my hospice patients go through — and what they need on their final journey of life. “Hospice helps bring comfort to all three aspects of a person’s life — mind, body and spirit,” says Nicole Garrity, a social worker for Compassus in Scarborough, Maine. “There is attention to relieving symptoms of physical pain while helping a person with their fears, anxieties and possible insecurities about what is next.” Helping the patient through the process is a team made up of nurses, social workers and chaplains who work together in a holistic approach because mind, body and spirit are all related. For example, grief may cause someone to have trouble sleeping, which in turn can make cause mental confusion. Or the person may be in a spiritual crisis, which may lead them not to eat well, which takes its toll on a person physically and emotionally. A person can also experience fear about pain, which can make the pain worse and cause anxiety. However, once the person is reassured that with today’s medicines, he or she should not feel pain, the fear diminishes, which positively affects mental health. “People are most fearful about the death process itself and fear it may be painful,” Nicole says. “They are also afraid that they have not made ‘their mark’ on this world. Reminiscing and reviewing the legacy of their life is an important part of getting ready for death and dying with peace.” QUALITY OF LIFE
Hospice isn’t only about death; it is about a quality of life, no matter how many or few days one has remaining.
“A terminal diagnosis does not mean that opportunities for growth, togetherness and reasons to laugh and smile need end. It may be more important now than ever to gather with loved ones and make positive, happy memories so this time is not all about sadness, doom and gloom,” Nicole says. Compassus provides opportunities for patients to enjoy life with special events, such as making it possible for a person to go to the symphony, a ball game, celebrating a birthday or anniversary with a special meal or enjoying a visit by an Elvis impersonator. “People may have a lessened sense of sadness if they can look back at the final days of their loved one’s life and know that the time was not ‘wasted.’ Participation in these special events serves to create memories for the dying and their loved ones,” Nicole says. HELP FOR SURVIVORS To help loved ones after the terminally ill person has passed, grief groups, workshops and memorial services, where family and friends can share feelings and talk about the pain, serve as a way to heal and to keep on living. “If grief is kept quiet and private, it can be very isolating. This can intensify the feelings of grief and make the situation worse,” Nicole says. “By addressing the emotions and talking about it with others, they know they are not alone and can have a safe place to vent their feelings, which will help them move on.” Everyone deals with grief in a unique way, depending on the person, circumstance, belief system and coping skills. What works for one person may not work for another. Grief takes time. In today’s fast-paced society, there is often little patience for a process that may take months or years. The bereaved often state they feel rushed to “get better” or “get over it” by some who lose patience with them. Sharing these feelings helps.
As a cancer survivor as well as someone who has experienced the loss of loved ones — including my mother to Alzheimer’s in 1998 — I have a deeper understanding of what many of my patients may be feeling, physically, spiritually and emotionally. Fear comes from uncertainty. One of my favorite sayings is, “Don’t waste your pain.” As caregivers who have gone through serious illnesses, we can use our experience to help our patients. In my own experience counseling patients with a terminal diagnosis of cancer, I’ve found they are much more willing to open up emotionally when they find out that I am a cancer survivor. Our pain can be a uniting force for grief work and healing. Death is something that touches everyone’s life — no one can escape it and it is what makes us all human. Though we can do nothing to prevent death, we can provide care and comfort to the terminally ill by being there for them until they take that last breath. They cannot avoid the journey but they do not have to do it alone. Our compassion continues as we support those friends and family members who are left behind to continue living a life that is void of the deceased loved one, but is still worth living. By working in hospice, we as caregivers are all answering the call to compassion.
Grief groups and workshops can help heal and handle grief after the death of a loved one.
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‘A TRUE CAREGIVER’
MIKE FRITZ, BEREAVEMENT COORDINATOR FOR COMPASSUS–CENTRAL TEXAS, RECALLS HOW A SPECIAL PATIENT WAS ALWAYS FIRST AND FOREMOST A CAREGIVER.
A caregiver until the end
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As a veteran hospice chaplain, I have seen many patients and caregivers over the years, but one stands out in particular. This man was a longtime minister, a caregiver in his own way. He loved his faith deeply and shared it often. You would think this would be what I remember the most about him, but it is not. He was actually the patient that I was to go and minister to and to be the support he needed now. As I think of him, I think of a true caregiver. Each time I went to visit, in fact, any time any of the team went to visit with him, something unique and special happened. As the chaplain it was my job to bring spiritual healing, comfort and encouragement. But not with this patient, for as we would begin to leave after visiting with him, he, the patient, would pray for us. I told him that it was my job to pray for him. He would reply, “No, you go out traveling, and visit with others. You need the prayer; I don’t need them now, but I will soon.” Each visit would be the same, with him insisting on praying for us. This continued until one day he was in bed and not getting up. As I finished my visit he said, “Now I’m making my journey so you can pray for me.” His journey on earth ended and his spiritual life began. What a deep lesson to all caregivers and for me as a chaplain, he taught — that everyone needs to have a person who cares for them and prays for them. What a true caregiver the patient was to those who were there to care for him.
THE RIGHT MIX
DEBORAH MUSICK, HOSPICE CHAPLAIN FOR COMPASSUS–MUNCIE, DESCRIBES HOW SO MANY BRING SOMETHING SPECIAL TO THE CARE OF EACH PATIENT.
Recipe of care As a member of a hospice team, you soon realize that everyone offers their own particular ingredient of caregiving: the team coordinator who answers the phone and offers a heaping cup of encouragement; the business office coordinator who provides the necessary utensils to make the office run efficiently; the hospice consultants who give the families the first cup of melted compassion; the social worker who stirs in cups of hope; the nurses who bring cups of love to the patients and families; the hospice aides who share large hugs in assorted sizes; and the chaplains who gives tablespoons of love and faith. And finally the executive director brings all these ingredients together and stirs the pot, so to speak, to bring the sweet flavor of a recipe of care to the patients and families. I was reminded of this recipe of care as I entered a patient’s home one day. She looked like a small child sitting in her oversized stuffed chair. Her two daughters welcomed me into her home, and I could smell the delightful aroma of love and care in this house. Her daughters provided the necessary answers for my chaplain visit, but I sensed there was so much more to this woman’s story. As I sat there listening, the daughters began to share their mother’s narrative of coming from Kentucky to Indiana, raising seven children and her tremendous amount of faith in her God. As they shared this small tidbit of her life, her eyes lit up, and I could see her spirit stir within her delicate frame.
I always try to offer a prayer to the family and patient before I leave, and as I sat near the patient, I cupped her small hand into mine and began a prayer of encouragement, faith and love. As I ended the prayer, she squeezed my hand, and she began to speak in a quiet whisper. I leaned closer to hear her words, and to my surprise she was praying for me. I knew I was on sacred ground as this saint of love was offering ingredients of hope, love and faith for me. Tears welled up in my eyes as I received her words. I walked out of that house different that day and as I pen these words, I hold that memory very softly in my heart. I had been a witness of a recipe of care with a family who loved their mom very much, and of the woman whose life inspired this recipe.
RECIPE OF CARE
As we walk this journey in hospice, We see so many cups of love, Reflected in the hearts of those Who believe in a God above. Tablespoons of faith, Hugs in assorted sizes. Compassion, hope and caring Angels with disguises. Yes, as we walk this hospice journey, Giving the ingredients of love to share With our patients and their loved ones, May they taste our recipe of care.
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‘WE ARE HERE’
MARIO-SETH MORALES AND JOHN J. CHOI, BEREAVEMENT COORDINATORS AT COMPASSUS–PLACENTIA, SHOW HOW HOSPICE TEAMS AID FAMILIES IN CRISIS.
Fellow travelers during the storm of death As hospice caregivers we realize that the key to life’s success is balance. Life is about constantly maintaining balance in health, emotions, spirituality, relationships, finances and more. However, just when we thought that all was well and balanced, when we can sit and “enjoy life,” when the “golden years” are here, our life’s balance is jeopardized and lost in the unexpected but certain storm of death and dying. As hospice caregivers, we also realize that when we are honored to enter in the circle of life of our patients and families, balance now becomes a crisis, a full dimension of fear with loss affecting all relationships. The storm of death is a crisis, with self, with others and with whatever our definition of God may be. Deep inside we find ourselves dealing with loss of control, future existence, independence, pleasure, predictability and consistency, ability to fulfill plans, familiar environment and purpose. As complicated as this seems, caring for those who are dying and their families really means that we become a compassionate fellow traveler during “the storm.” As hospice caregivers, we are certain that we cannot care for the dying and their families the same way we cared for 26 Everyday Compassion Vol. 8 Issue 1
them at other stages of their journey with illness. We must provide a plan of care that focuses on symptom management and pain control, but we must pay full attention to facilitating those relationships before, during and after death. Our hospice team brings a sincere willingness to connect with patient and family, despite the intensity of the storm. This is particularly
A soft tone of voice or a gentle touch communicate that we care and that we are here to help find solutions to our patients’ problems.
noticeable when we connect with the individuals involved though our tone of voice, with the words we choose, even with our muscles as we relax and aim to be fully present to do our job. These small but powerful actions communicate that we care and that we are here to help find solutions to the problems developing daily during the storm. Chaplains, social workers, volunteers, aides and nurses bring this message when they sit bedside and make eye contact with the dying patient, listening, paying attention to the mysterious and incomprehensible decline. It is not about how much time, it really is about traveling with them in the storm, respecting and caring about a dignified death. After death, the storm continues for the family seeking to find a new balance. As fellow travelers, we offer our bereavement services as they experience the intense, internal pain due to loss and aim to express it outwardly. Consider the following life journey of one gentleman: A 70-year-old lady with Alzheimer’s came on our service in August 2014. Her husband promised to take care of her during final days in their home, and did, until she passed away in late December that year. After 52 happy years of marriage, he realized his life would never be the same. He came to our commemoration service a broken man, deeply grieving over the loss of his wife.
On the surface he seemed to be well composed; yet underneath, he was paddling like crazy — a duck on a turbulent pond. He joined our grief support group, faithfully attended for more than a year and fully embraced the support that was available. Two years passed and his grief became manageable. He has become a “wounded healer” himself, touching lives by sharing his journey with people around him. He is also actively involved in the community as a volunteer. This is one of many great stories to tell indeed, but it really sums up who we are as hospice. We are making a difference in people’s lives every day, not only while they are here with us as patients, but even long after they are gone, continually touching the lives of those left behind.
Professional caregivers — hospice team members — become a compassionate fellow traveler to those who are dying and their families during “the storm.”
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LIFE — AND DEATH — BEFORE HOSPICE GLENDA SINCLAIR, RN, EXECUTIVE DIRECTOR OF THE MID-MISSISSIPPI PROGRAM, KNOWS FIRSTHAND HOW DIFFICULT END-OF-LIFE CARE CAN BE WITHOUT THE VALUABLE HELP OF HOSPICE.
BEFORE HOSPICE CAME TO MISSISSIPPI Glenda Sinclair has faced caregiving without hospice, so she’s intent on letting others know that helpful hospice services are available.
Today I am executive director of three hospice locations in Mississippi, knowledgeable of all aspects and services of hospice care. However, in 1980, I was the mother of a toddler named Carolyn who was diagnosed with Neuroblastoma, a form of childhood cancer. I was young and uneducated to the fact that children even had cancer. Carolyn was diagnosed when she was 2 and died five days after her fifth birthday. We had three long, terrible, wonderful years together as we battled her diagnosis. While we had some great days early in her treatment regimen, we had some extremely difficult days during her last six months of life. During this time we accepted the fact there was no cure for Carolyn, so we worked with the doctors diligently to provide her with the best, most pain-free end of life possible. Our young daughter had caring and wonderful physicians who were constantly available to us for her needs. However, we wanted to have her home as much as possible
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during the last months of her life. Unfortunately, because we lived in a small Mississippi town more than 100 miles from the hospital, that was difficult to accomplish. Carolyn passed away early in 1983 before hospice was available in our area. The word “hospice” was never spoken during the time Carolyn was treated. HOW IT COULD HAVE BEEN
In our hospice programs we encourage our colleagues to share their own personal hospice story if they have one or explain why they chose to work in hospice. Many tell of the wonderful care that was provided by hospice professionals to their friends and family members in the past that so impressed them until they chose a career in hospice. Certainly seeing compassionate and excellent care given to those close to us can lead us to desire to provide such care to others. Many of our colleagues share such stories. I myself can share instances since I have been in hospice where our colleagues provided such care to
my friends and family, as well. But when I share my hospice story, it is much different from this. I tell Carolyn’s story and the fact that hospice was never mentioned because it was not available at that time. While we were blessed to have great professional and family support and were able to provide good care and support to Carolyn, I often think of how I desperately needed the support and services hospice could have provided. The many days we spent at the hospital could have been spent at home, had we had the services and care of hospice. And Carolyn was not able to die at home as we would have chosen. I think about our excellent colleagues and how wonderful it would have been had the doctors been able to send us home with an excellent social worker such as Heather or Shannon or a chaplain such as Brother Millican or one of his fellow chaplains. I needed their care and support so much and I didn’t even know it. How comforting it would have been to know I could pick up my phone any time day or night and have one of the caring and qualified nurses we have come to our home to care for Carolyn and relieve her symptoms or to have one of our talented certified nursing assistants to assist me in bathing and caring for her. I can’t begin to explain what that would have meant to me. If we had had hospice care, I’m sure I would now look back and say I could not have made it without them. I honestly don’t see how I did. SPREADING THE WORD
After facing caregiving without hospice, I now have a sense of urgency to inform the communities we serve about hospice care so others
don’t have to experience what we did. It’s important that they know these services are available and not miss out on the gift of hospice as we did with Carolyn. During those wonderful, frightening years with Carolyn, there was nothing else we could have done and I am comforted knowing we did everything we could do for her during that time. I want families today to have that same comfort in the future by being equipped with the knowledge of hospice services and availability so they can make the best decisions for their loved ones and family members. While it is their option to not choose hospice if they so desire, I feel it is our responsibility to give them the most information possible to make the best decision for those they love. Being someone who was not able to receive the gift of hospice, I can understand the need to share our knowledge with those we come in contact with every day. I work constantly with our teams to help them understand what valuable information we have to share.
Glenda’s daughter, Carolyn, was diagnosed when she was 2 and died five days after her fifth birthday.
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PHYSICIAN SPOTLIGHT SHINING A LIGHT ON SOME OF THE FINEST DOCTORS OF COMPASSUS.
Kurt Merkelz, M.D., Assumes New Leadership Role We are proud to welcome Kurt Merkelz, M.D., previously medical director of the Compassus program in Houston, Texas, to the organization’s executive team as Senior Vice President and Chief Medical Officer. At Compassus, our medical directors and care teams across the country demonstrate our commitment to delivering quality patient outcomes and increasing access to end-of-life care. Dr. Merkelz has modeled this devotion to patients and commitment to excellence since his start with the organization in 2010. He will draw on the invaluable experience and knowledge he developed in the field to lead our quality and clinical initiatives. He will also chair the Medical Director Advisory Council, of which he was an original member and has served for the past six years. Dr. Merkelz received his medical degree from the University of Texas Health Science Center and completed residencies in family medicine and geriatric medicine at the University of Cincinnati. Following his residency at the University of Cincinnati, he became assistant director of the international health program. His work has involved him in medical relief with indigenous populations across the world. “Although my job was in coordinating medical brigades in developing countries, much of the work and preparation was personal time, and that volunteerism was what made all the experiences so rewarding, as well as rejuvenating,” he said. Throughout his career, Dr. Merkelz has focused on caring for older adults.
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Before joining Compassus, he served as the director of the Geriatric Medicine Clinic at the University of Texas Health Science Center in San Antonio. “For me, the progression of my career towards end-of-life care has always been centered on a common thread of helping care for the underserved,” he said. “From my international work, to caring for the elderly and now focusing solely on end of life, I believe each group represents marginalized communities requiring unique resources and care processes.” His perseverance in raising industry benchmarks for quality hospice care earned him the R. Sean Morrison, M.D., Award for Outstanding Achievement in Hospice Physician Leadership. “It’s an exciting time in hospice,” Dr. Merkelz said. “While many regulations exist, there is a call for making us all more accountable for the care we deliver.” In addition to being published in a major journal and having authored chapters in three textbooks, Dr. Merkelz is also triple-board certified in hospice and palliative care medicine, family practice and geriatrics. Dr. Merkelz has four children and his wife is also dedicated to healthcare, a leader herself in heart transplant care coordination. Dr. Merkelz is one of many dedicated, highly qualified doctors that help Compassus deliver top care, comfort and support to patients and their families across the country. We are honored to have him join our executive team.
PRECIOUS TIME MICHAEL G. BOSTON, CHAPLAIN FOR COMPASSUS–BUTTE, SUGGESTS HOW TO HELP PATIENTS AND CAREGIVERS MAKE THE MOST OF THEIR LIMITED TIME.
Making good time If there is one thing in this life we take for granted, it’s time. We are always saying things like “I need more time,” “I’m out of time,” It’s about time,” “It’s time to relax,” and on and on. Time is one of the many intangibles of life, but I would venture to say that there is nothing that impacts the tangible things in life more than time. And no one becomes more aware of time than the one who has been told they have but a finite amount of time left. A caregiver who suddenly realizes that time with their loved one is limited finds his or her mind racing to remember the times of gathering and embracing, the times of dancing, the times of loving and the times of peace. A caregiver may ask themselves, “Did I take enough time to say I love you?” or “Did I take enough time just to be with you?” or “Did I take time with you for granted?” When members of the hospice team are caring for the caregiver, it’s helpful to remember two absolute truths about time:
Second, time cannot be saved and redeemed for a “rainy day.” There are no “do-overs” when it comes to time. Every morning each person alive is credited with 86,400 seconds to use as he or she sees fit. At the end of the day, every one of those seconds that was not used is gone. There’s no going back. There is no drawing against tomorrow.
As we care for our patients and their caregivers, it’s good for us to be aware of how we have allowed time to impact our own lives and relationships. Being aware of time can provide insight into the lives of those we care for as they realize with each passing hour, that their time is limited.
No one becomes more aware of time than the one who has been told they have but a finite amount of time left.
First, every life is comprised of a set number of days between birth and death. The total number of days of a lifetime remains a mystery until revealed at death. Some believe that this number is purely defined by chance. Faith tells others that this number is set by God who knew before the foundation of the world the length of every life lived.
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INSPIRED BY LIFE THE LOVE THAT MONICA PEREZ, A CERTIFIED NURSING ASSISTANT FOR COMPASSUS–YUMA, HAS FOR HER WORK FREQUENTLY SHOWS UP IN HER WRITING.
‘It is truly my calling’ Monica Perez, a CNA for Compassus-Yuma, writes poetry and songs to express herself. “The poems/songs I write are inspired by life experiences. Honestly, they are truly God-inspired,” she says. These verses were written for a particular patient. “I knew my patient was living his last hours. This poem was birthed out of the pain I was
feeling and was written the night before he passed away,” she says. Monica feels deeply about her work, which shows in her writing. “It is truly my calling to serve the terminally ill and team up with their families,” she says “I ‘get to’ be a part of their life. It’s not just a shower or sponge bath I assist them with; it’s my heart, my time, my all, and yes, sometimes a song.“
IT WAS AN HONOR TO SERVE YOU It was an honor to serve you I’ll remember your smile and the way your eyes lit up when I walked in your home It was an honor to serve you You shared the same stories but I listened intently as though it was the first time you shared It was an honor to serve you You always spoke a kind word of how you appreciated my assistance It was an honor to serve you We sang God Bless America and Oh Beautiful Then joked about going on tour It was an honor to serve you I’ll cherish the last words you spoke to me “You’re a good person” It was an honor to serve you I know God loves me, for I was graced with your presence if only for a season It was an honor to serve you Our visits will be no more but memories of you are treasured within my heart Yes, life goes on and there are more to serve one day at a time But truly it was an honor to know you and an honor to serve you.
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POETIC EXPRESSION HEATHER HENDRICKSON, A CERTIFIED NURSING ASSISTANT FOR COMPASSUS–MONETT, WROTE THIS LOVING POEM FOR HER GRANDMOTHER.
The hands I hold The hands I hold of the old Are weak but strong. As the hands get weak They lose their grip They lose their strength to hold on. The hands I hold are gentle, but kind; The hands I hold not only touch and send love, but they also guide the ones that are touched by the hands, The Hand of God. The hands I hold are soft and gentle. There is nothing more kind than the elderly’s hands. They have touched it all, and that is why, the hands I hold are the love of my “life.”
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Everyday Compassion is published periodically by Compassus. Please address any comments or questions to: Editor, Everyday Compassion Magazin...
Published on Nov 21, 2017
Everyday Compassion is published periodically by Compassus. Please address any comments or questions to: Editor, Everyday Compassion Magazin...