A Publication of Hospice El Paso Holding Hands. Holding Hearts. Yes, A Time for Hope In This Together Sibling Rivalry ...or Revelry? Finding Grace and Peace 7 Ways to Celebrate A Life a H O S P I C E E L P A S O b From left to right: Chayo Apodaca (husband); Becky Lujan, Delia Schwartz, Gina Moss (daughters); Roland Apodaca (son), and Valerie Martinez (daughter) Family has always been very important to us. Our parents have taught us to be good to each other and always be there for one another, in good times and in bad times. Our mother’s illness brought us even closer to one another. We have laughed together in good times and cried together in bad times. When a loved one has reached the stage in life requiring the preservation of dignity, deciding how and where this preservation can best be provided is very difficult. The decision to provide that love, comfort and warmth in the home was quickly and positively reassured after calling Hospice El Paso. After our mother was admitted into their services, only then did we realize the full scope of the services being provided for her care and our well-being, and the entire hospice expense was covered by Medicare. Hospice El Paso was there for us throughout our mother’s illness, not only medically, but spiritually as well. Their guidance, support and patience ensured our mother’s safety and quality of care, and gave us peace of mind that we had made the right decision. No matter the time, day or night, if we had a question or concern, we could call and Hospice El Paso would respond with professional and thoughtful compassion. Gratitude and words of thanks are not quite enough for all they did and continue to do for us and other El Pasoans in their service. – The Apodaca Family 2 www.hospiceelpaso.org Welcome to Touching Lives F E AT U R E A R T I C L E 8 Yes, A Time for Hope Why researchers say life’s last chapter can be a time of optimism. by Paula Spencer Each day brings a new perspective to the community we serve. I am honored and proud to work with a bright, creative and compassionate staff of employees, volunteers and board members who provide such an important service to our community. The result of a winning team has once again, allowed us to surpass the number of total patient days by over 10,000! 5 Through the generosity of our community supporters, we were able to exceed 2010 by providing over 3,100 days of non-funded care to El Paso patients in need which translates to over $425,000 As the change in healthcare quickly turns around us, our commitment to hospice care remains strong and we continue to remain part of the solution. With the implementation of our new pediatric program, Hospice El Paso will have the privilege of providing valuable services and support to a very unique 14 4 and tender population. There is also hope for improvement in the whole culture of end-of-life care as we come to learn and understand a patient’s needs. Statistics show that people facing life-limiting illnesses are opting for care that addresses medical, emotional 8 The Gift Hospice Volunteers Give—Time HELPING HANDS 5 In This Together by Paula Spencer and spiritual wishes. With that in mind, Hospice El Paso opened a new 16-bed facility that provides 24-hour compassionate care for El Pasoans—hence, the name CAREGIVER’S CORNER of our new west side inpatient facility, The Center for Compassionate Care 6 (see page 17). Hospice El Paso is now offering our new inpatient facility staffed Sibling Rivalry...or Revelry? by Melanie Haiken with highly specialized hospice personnel who will manage a patient’s pain and symptoms round-the-clock. SPIRITUAL SUPPORT A few of the many rewards that we take away from work are meaningfulness 12 Finding Grace and Peace and the heartfelt impact of making a difference in people’s lives. We are committed An Interview with Kathleen Dowling Singh to the challenges that face El Paso and will continue to find new ways to ensure that we can keep our commitment to our patients and families. It’s what our LIVE WELL community wants. We’re here to serve you. 14 7 Ways to Celebrate a Life by Marlene Prost Linda Black 17 Hospice El Paso’s Center for Compassionate Care–West Executive Director Hospice El Paso 1440 Miracle Way El Paso, TX 79925 Phone: (915) 532 5699 © 2011 SRI Media, Inc. (610) 455-0706. All rights reserved. Unauthorized duplication is prohibited by law. 18 The Five Stages of Life Reconciliation by David Kessler CONTENTS in hospice care and support at no charge to those less fortunate. a H O S P I C E E L P A S O b The Gift Hospice Volunteers Give— H ospice El Paso patients and outreach, clerical support, crafting, families benefit every day fundraising, and many other duties Time thoughts and feelings. On occasion I have sat with patients who could no and projects. longer communicate; but the visit is from our community who volunteer Each volunteer brings their own just as important to let them know to donate their time. Volunteers special gift to the program, but the they are not alone and to provide provide support services to include greatest gift they bring is the gift of companionship. much-needed breaks for caregivers, listening. This type of volunteer work As a Hospice volunteer these companionship for patients and requires patience, compassion and special relationships have helped me families, transportation, community empathy. Eddie Esparza, a patient and to put my own life in perspective. The family volunteer, specializes in this relationships may be short-lived, but form of volunteering, which requires they are powerfully meaningful to me.” face-to-face visits with patients. Eddie Hospice El Paso has also instituted had this to say about his experience: the unique Resident Pal Program which from kind and caring people “After I retired, I decided I had is in place in nursing homes where come to a point in my life when it was Hospice El Paso has patients. When the time to give back rather than receive. nursing staff has patients who receive I became a Hospice El Paso volunteer very few visitors, or none at all, they since hospice had played such an call and are furnished a volunteer to important part in my family life. I am provide companionship for those a patient and family volunteer, so I visit patients, whether they are in the patients and/or their families in their Hospice El Paso program or not. V homes, nursing homes or foster homes. I try to develop a relationship with the patient and their family. I am genuinely interested in them and I have found when a patient or a family member feels the sincerity and compassion of my interest, they are interested in sharing how they feel about what is happening to them and relating stories about their family, their history and their life. Sitting with the terminally ill can be very challenging and fulfilling…to know that you have Eddie “Lalo” Esparza 4 www.hospiceelpaso.org helped someone to share their Besides patient visits, volunteers contribute in so many other ways, each unique in their own talents. If you would like more information about volunteering for Hospice El Paso, please contact us at (915) 532-5699, extension 375. a H E L P I N G H A N D S b In This Together Three ways hospices help not only patients, but their loved ones, too. by Paula Spencer M yths about hospice care abound: That it’s just for the last days of life. (People with a prognosis of six months or less are eligible, though there Here are 3 ways hospice supports loved ones, too: is no time limit, and it is not unusual for a person’s health Hospice helps relieve overall stress. to improve while in hospice care.) Or that it’s expensive. Most Americans have limited experience with terminal (Hospice care is covered by Medicare and private insurance.) illness. Coping with difficult medical decisions, fear and Or that signing up means “giving up.” (It doesn’t!). worry, and great sadness—usually while trying to continue Here’s one more misconception that you may be surprised some semblance of everyday life—can exhaust anyone. A to learn is untrue: That hospice is just for the dying person. hospice team tackles the situation with diverse resources, In fact, hospice care is designed to support the entire both on site and a phone call away. Net result: Sadness family at the end of life. obviously remains, but the shared burden means stress Hospice is a special concept of care designed to provide levels plummet. comfort and support to patients and their families when a Studies link hospice care to better quality of life not only life-limiting illness no longer responds to cure-oriented for the terminally ill, but for their families as well. A 2010 treatments, according to the Hospice Foundation of America. study of more than 700 cancer patients, for example, found “And their families” is no casual choice of words. that those whose loved ones died in intensive care units (continued on page 16) Touching Lives 5 a C A R E G I V E R ’ S C O R N E R b Sibling Rivalry…or Revelry? How to set aside old habits and come together for a parent’s care. by Melanie Haiken C oping with a parent’s illness is hard enough. But in too many families, resentment, If You’re the Sibling Who Lives Nearby… possibly by conference call? Or are they comfortable with you making the decisions and relaying information? Some distant siblings may want guilt, past problems, and hurt feelings among siblings amp up the stress Understand that you all accept to be informed every time there’s a level. “Every issue from the original things at different paces new test result or medication change, family can come back into play,” says Someone who lives close to parents while others may find that level of Francine Russo, author of They’re My and sees them frequently may be involvement overwhelming. Respect Parents Too: How Siblings Can Survive more aware of their declining health. their wishes—but first you have to Their Parents’ Aging without Driving So when bad news arrives, it may know them. Each Other Crazy. “And as the parent’s come as a much bigger shock to condition worsens, the feelings get more distant brothers and sisters. Consider bringing in a neutral more intense.” The opposite can also occur; a sibling party to aid decision-making How to escape old rivalries in a who visits after an absence may pick A family meeting or conference call crisis and come together for the up on a new symptom that you’ve with a social worker, geriatric care common good? grown used to without “seeing” it. manager, or hospice coordinator helps everyone feel included. This objective third party can lay out the realities and suggest ways to work together. “A professional who’s experienced in family relations can keep any sibling issues that are coming up from overwhelming the discussion,” Russo suggests. Share the care (even when it’s hard) 6 Touching Lives Talk about who wants to know For some hands-on caregivers, it can what, and when be hard to step back and let others in. When a parent’s health reaches a If you’re feeling resistant, ask yourself crisis or decision point, when do your why. Because you’re worried others siblings want to be called? Do they are less capable? Because you’re want to be included in consultations seeking validation from a parent with doctors and social workers, who’s always withheld approval? a C A R E G I V E R ’ S C O R N E R b “It takes a lot of soul searching to examine your motivations, which may not even be conscious,” Russo says. But if you can let go of past needs, you can better accept help in the present moment. If You’re the Sibling Who Lives Far Away… Trust the messenger Beware of “distrusting the messenger,” the phenomenon where a healthcare professional delivers difficult news was, you’re making an enormous to the local sibling, who in turn contribution to her emotional health,” communicates what she’s been told— Russo says. and is promptly dismissed. “Fear, harder than asking ‘Are you okay?’ or But take care to avoid the pitfall combined with old family patterns, ‘What can I do?’” Russo says. known as “anger-guilt gridlock.” can lead us to have responses like It’s natural to hear your sister’s ‘Oh, she exaggerates,’ or ‘She’s a A few ideas: complaints as accusations and go drama queen’,” Russo says. Send small gifts, particularly those straight to guilt. But that’s not her Unfortunately, responding with geared towards stress relief and goal. She just needs validation of doubt or loads of skeptical questions self-care: A gift certificate for a her feelings. By setting aside your massage, fresh fruit, a relaxing CD. reaction, you can give that to her. puts the messenger on the defensive. So if you find yourself reacting this way, take a deep breath and remind yourself that your sibling is doing the best he or she can with a thankless job. If you feel you need to hear the news directly from the doctor, Treat your sibling to a nice dinner when you’re in town. Time your visits so that you can give your sibling a break away. Help pay for respite care or your parents other financial needs. ask to do so. Otherwise treat the communicator with trust. Focus on the ultimate goal: Your parent’s care Stop tension in its tracks by reminding yourself that right now, the focus should be on your parent, not your own drama. Concentrate on your Let your sibling vent shared concern for your parent. That’s An empathetic ear may be what good for everyone’s well being. V Don’t take “I’m Fine” for an answer your sibling needs most. “Just by “Most people have trouble saying they being available to listen when your need help, so you may need to probe sibling tells you how awful her day Experienced family caregiver Melanie Haiken writes about health and travel from Marin, CA. take a deep breath and remind yourself that your sibling is doing the best he or she can Touching Lives 7 Yes, a F E A T U R E b A Time for Hope Why researchers say life’s last chapter can be a time of optimism. by Paula Spencer 8 Touching Lives I n his mid-80s, Ned was diagnosed for a Dying Loved One. Yet too with a fast-growing brain tumor. often, doctors and families fear that Eventually, he and his oncologist once the patient goes off a curative decided no more treatments existed path, he or she will fall into a state that could either cure his cancer or of despair. prolong his life. So he quit curative care and entered a hospice program. this,” Feldman says. “What happens Not a very auspicious beginning to is that people re-define hope. Hope a story about hope, is it? is invested in different goals other Yet Ned, it turns out, was exceed- than a cure.” ingly forward-thinking, even though “If all we hope for is to live longer, he knew he was nearing his end always, then at some point we will all due to a fatal disease. He bought a become hopeless,” says Ira Byock, MD, camcorder to record stories for his director of palliative medicine at grandchildren, to whom he wanted Dartmouth-Hitchcock Medical Center to pass on his knowledge. He also and the author of Dying Well. “But I decided he wanted to leave a legacy am sure it’s possible for hope to shift, of his trademark humor. So he because I’ve seen it over and over in began writing down all his jokes. 30 years as a doctor.” By the 150th, his hands were too These new hopes can take limitless shaky to continue, so he dictated forms because individuals’ aspirations another 200. Then, noticing that and goals are as unique as they are. musicians sometimes entertained at Here are some common themes: the hospice, he asked to perform a To reconcile with someone or stand-up routine. Except Ned could “There’s no evidence to support make amends no longer stand, so the audience To have good pain control came to him—doctors, nurses, aides, To experience something one volunteers, and fellow patients always wanted to do gathered around his bed. Ned was a To leave a legacy of some form riot; the room filled with laughter. To help others “Now I know my jokes will live To take up a hobby on,” he smiled with satisfaction and To have dignity optimism as he gripped the hand of To do a favorite thing one last time a hospice counselor. To be out in nature To enjoy intimacy with loved ones Hope helps all through life “Dying is not an inherently hopeless state,” says David Feldman, Ph.D., assistant professor of counseling psychology at California’s Santa Clara University and the author of The End of Life Handbook: A Compassionate Guide to Connecting with and Caring To build a good relationship with God To pass on one’s knowledge or expertise To distribute possessions meaningfully To carry out some hope from the past. Touching Lives 9 What, exactly, is hope? Interestingly, people in hospice seem to have more Psychologists’ definitions vary, but a standard one is this: goals, and in more areas of life, than those who continue Hope exists when three conditions are met: on a curative path, preliminary results from Feldman’s 1.Goals – having something to hope for. Call ‘em dreams, own research have shown. This may even be a contributing aspirations, desires. They can be big or small, and factor to why studies show hospice patients live longer concern any arena of life. and report better quality of life than those who receive 2.Pathways – having a plan or strategy that will get you standard care. to your goals. Not having any idea how to reach a goal would contribute to hopelessness, not hope. 3.Agency – having the energy or motivation to go after What hope isn’t. “Hopeful thinking is not the same as wishful thinking or your goal. Without an urge to make it happen, you can’t the so-called ‘power of positive thinking,’” Feldman says. feel hopeful. Consider the long-married Harold and Harriet. While Having goals, a pathway to make it happen, and the Harold underwent treatment for bladder cancer, Harriet desire to follow through make people feel hopeful at any refused to talk to him about anything negative—not his life stage. A large body of positive psychology research on pain, not his nausea, not his hair falling out—for fear it healthy people links hopefulness to less depression and would bring him down. Meanwhile, Harold felt unsup- anxiety, stronger cardiovascular health, an ability to tolerate ported because his partner wouldn’t listen to him. Their pain better, a greater sense that life has meaning and relationship struggled at the very time they needed one purpose, more contentment, and better coping with stress, another. “Helen’s way of thinking wasn’t positive thinking, adversity, and trauma. it was denial,” Feldman explains. Hope likely holds similar benefits for the terminally ill, Denial denies and distorts reality. It says: “I will ignore Feldman, Byock, and others believe, although there’s less reality to maintain a positive outlook.” Hope builds on data so far because this is a fairly new way of looking at reality. It says, “I will face reality, admit the prognosis, and the end-of-life mindset. Hopelessness—which is one of then ask, “Now what?” the hallmark symptoms of depression—has been linked with thoughts of suicide and assisted suicide in the How families can help. terminal and elderly. “The challenge at the end of life is not so much protecting or restoring hope as diversifying and redirecting hope,” Mark J. Sullivan, MD, PhD, summarized in an influential 2003 American Journal of Geriatric Psychiatry article about hope and hopelessness at the end of life. And that’s where loved ones come in. What can you try? First, make sure pain management is appropriate. When someone is in pain, they can’t focus on their desires and they certainly don’t have energy to make them happen. In fact, Feldman calls pain one of the biggest roadblocks to hope. (The other is having your family be in denial about death.) A cornerstone of hospice care is addressing pain so that the person is always comfortable and can have a better quality of life. 10 Touching Lives Ask leading questions. Talk openly with your loved one. Ask, what are your hopes right now? What’s important to your life? What gives you a sense of meaning? Nothing Critical Left Unsaid The refusal of family members to accept end What would you like of life is one of the biggest obstacles to hope to do in the time you for the dying, studies show. “A conspiracy have left? What of silence,” Ira Byock, MD, calls it. The would be left undone remedy: Talk about what’s happening. if you were to die sooner rather than later? (See sidebar on this page, “Nothing Critical Left Unsaid.”) “I’m not sure we have to be happy about it, but we do have to acknowledge we’re mortal,” says Dr. Byock, professor at Dartmouth Medical School and author of The Four Things That Matter Most. When families avoid talking about impending death, Be a cheerleader. he says, the inability to be truthful puts up an Sometimes the dying have doubts emotional wall that separates them from one about what’s possible or appropriate. Encourage that sense another. “Everyone puts ever more effort into of motivation: “Sure you can do it; we’ll help!” “You don’t ignoring the obvious.” He suggests a better way: want to pressure the person into anything, just give gentle encouragement,” advises Feldman. Stay attuned to ice breakers from the dying person that can be openings for frank, loving Look for ways to make dreams and plans come true. conversations. Some examples: “I wish it would When someone expresses a desire, take it seriously. be over.” “I think the doctor is just trying to make Try to find ways to build a pathway for it to happen. money off me.” “I hope I can live to see Julie’s One 90-year-old yearned to drive a Ferrari before he died; baby born.” his family and hospice coordinator worked with a local dealership to make it happen. (His oxygen tank sat in Resist the common impulse to deflect such the passenger seat next to him!) comments with a quick, “Oh don’t talk like But know that many wishes are more basic and easy, that!” Instead, try a response that sounds more if no less heartfelt. Perhaps your loved one wants to like an invitation for sharing: “That sounds hard.” reconcile with an estranged sibling or child. Or meet with “I’m so concerned and I’d love to hear how a clergyperson one-on-one. Or take up birdwatching. you’re really feeling.” “I hate to see you going Or tell jokes. through this.” “I can’t imagine how you’re going Dave Feldman was the hospice counselor whose hand through this.” Ned, in the opening anecdote, clutched after his bedside comedy routine. “It was an amazing moment of immense Also use “I” statements to open up to other hope,” he says. “You could see it on his face.” family members. Because you’re talking about And that, as they say, beats the alternative. V your own feelings—“I’m worried Bill’s getting weaker”—this way of speaking is less threatening Paula Spencer is the editor of Touching Lives and a senior editor of Caring.com. She specializes in writing about life stages. than saying, “Bill’s sicker, we need to talk about his dying!” Touching Lives 11 a S P I R I T U A L S U P P O R T b F I N D I N G The Touching Lives Interview: What do those who haven’t attachment to this sense of body as Insights from spiritual adviser and witnessed much of it “me,” attachment to loved ones, author Kathleen Dowling Singh misunderstand about the attachment to this beautiful planet, experience of dying? attachment to what we know. Most Dying is often a radiant and grace-filled of us will observe our own aversion moment. It is a privilege to be present to the unknown, aversion to physical with it. Entering this mystery, and pain, aversion to perceived loss. being able to stay present with it, calls It’s an epic inner struggle to come forth our own courage and calls forth to peace with a deep realization that deep compassion and common we are mortal beings, that we have humanity. We see the quieting, in a shelf life. Most people avoid the another, of the striving and the questions and the struggle, which grasping and the tension that only makes our dying more filled with characterize the majority of the emotional anguish. moments of most of our lives. We see, finally, the ease and surrender Describe what you call the “nearing that herald entrance into our essential death experience.” nature, buried for most of us beneath The nearing death experience can layers of constructed identity. occur weeks, days or only moments before we enter the phase of active 12 Touching Lives Why are many people afraid dying. It has powerful parallels of dying? with deep experience of spiritual The most beneficial way to understand realizations. It’s characterized by this question is to ask it to ourselves: qualities of relaxation, of withdrawal Why am I afraid of dying? See what from worldly activities, of brightness arises. For most of us, even the asking or radiance, of a sense of attention of the question stirs up deep feelings of drawn inward in a concentrated attachment, of aversion, of uncertainty. way, of silence, of the sacred, of If we ask the question and ponder transcendence of who we have the response with a willingness to be believed ourselves to be and of all the attentive to what arises, most of us will places in our lives where we’ve been notice attachment to this sense of self, “stuck,” of knowing rather than simply G a Grace S P I R I T U A L S U P P O R T A N D b Peace believing, of intensity, of merging, and worries, and sadness, and, to the How honest is my self-inquiry? What of perfection. degree we are able, let go. May we do I know of my own depths? How These are qualities not ordinarily approach each other at our deathbeds thorough is my forgiveness? How deep experienced by our separate sense of with less fear and preoccupation and is my gratitude? How mindfully am I self. They are the qualities of grace. with more clarity and compassion. living each moment? The very presence of these qualities Affirm these things: “I love you.” “I’m Investigate the “who” it is we suggests that their source is in our grateful you love me.” “I forgive you.” think will die. Practice living a life only essential nature, far beyond the “Please forgive me.” “You can go.” lightly dusted with form. Practice conceptual image of the self. Give the gift of our attention. letting go. Letting go not only makes Whether death occurs slowly from May we assure our loved ones of our dying easier; it brings much more joy a disease or quickly from an accident, presence, without clinging or control… and ease to living. V these qualities seem to emerge. They’re just with love. identical to the qualities necessary for May we exercise true compassion deep spiritual insight and cultivated by and allow the dying person to turn spiritual practitioners from every tradition. inward. Let us help them unbind all that Dying is the most profound spiritual binds them to attachment to this body, experience of a lifetime. this lifetime, this self. Spiritual adviser and former hospice worker Kathleen Dowling Singh, Ph.D., is the author of The Grace In Dying: A Message of Hope, Comfort, and Spiritual Transformation. Be present. You talk about transforming death, in our perceptions, from a time of What else helps one more peace- tragedy to a time of grace. What fully surrender the body and the can families do to help foster such ego at the end of life? a shift? Prepare for death while in the midst Discriminate between the time of of life, far before the moment of a sickness and the time of dying. In the terminal diagnosis. Just as we often former, it’s appropriate to help a loved inventory our worldly possessions, one fight to stay alive, be present and accounts, and advance directive supportive. In the latter, it’s appropriate wishes, how beneficial it would be if to help a loved one let go and face we conducted a spiritual inventory. death, be present and supportive. Sit and ask: How well have I learned Also, do our own work. Honestly to love? How truthfully have I learned look at our own fear, attachment, to live? How generous is my heart? Touching Lives 13 time when they are losing control over many things, said Carol Weaver, director of enrichment at a hospice for the past 10 years. “They’re leaving a living legacy for their children and grandchildren,” she explains. “And it’s something for family members to keep and cherish.” 2 Record a life review We all want to know that our life mattered. That’s why the formal “life review” has become a popular process. Prompted by prepared questions, a dying loved one is encouraged to talk about life experi- 7 Ways to Celebrate a Life by Marlene Prost 14 Touching Lives ences, from early childhood on, while the family records the conversation. P “Just give suggestions, like when eering into the past and were you born? What was the favorite examining the events that toy you played with? What are you gave life meaning can be a afraid of?” Weaver says. “Not just surprisingly uplifting experience. Many facts and figures. Evoking emotions families find that celebrating the life presents a more comprehensive view of a terminally ill loved one brings of their life.” everyone closer. It can inspire candid talk and laughter. What’s more, the process gives the ill person, who may be feeling vulnerable, a sense of 3 Share a personal message Sometimes it’s awkward to tell even your most beloved relative or control over his or her own legacy. friend how you really feel. Another These seven loving ideas can help way: Make an audio or video recording you all cherish old memories while of yourself sharing reminiscences and creating new ones. feelings. Weaver recalls a young 1 woman whose taciturn grandfather Create a memorial DVD wouldn’t let her talk about her feelings Thanks to video and digital for him. Putting them on tape, she told technology, families can select photo- Weaver, allowed her the opportunity graphs, slides, and action shots of their to have closure. loved one and put them to favorite “Patients are reassured that their music on a DVD that the “star” can life had meaning, and that they are enjoy now. loved and respected,” she adds— Helping to plan the DVD gives a even those who are reluctant to dying person a sense of control at a hear it face-to-face. a L I V E W E L L b Some of our happiest family memories are of everyday life: Going fishing, watching a child’s music recital, playing ball. 4 Weave tangible memories his five-year-old son, explaining every he leaned over and said, “I haven’t felt Tributes can take non-media step of his illness. Weaver says her this young in a long time.” He even forms, too. For example, family and hospice’s bereavement department still took over the controls for 20 minutes. friends who live too far to visit can uses the book. You can bet those are 20 minutes contribute to a quilt made up of fabric Music was a big part of life for both he and his daughter will cherish squares that capture memories and another 39-year-old father who was forever. V sentiments. Send everyone a square debilitated by strokes. With the help to embellish or decorate with ink, of his music therapist, he surprised his embroidery, or other mementoes. eight-year-old daughter with a song A T-shirt collector saw his favorites about a father putting his daughter to assembled into a blanket, which was bed. The song ended with words she’d passed on later to his son. always say: “I love you all the way to Another popular trend: Huggable God and back.” memorial teddy bears made out of a “This is a CD just for her, she’ll have loved one’s clothing. the rest of her life,” Weaver says. 5 7 Record day-to-day living Some of our happiest family memories are of everyday life: Going Make a wish list come true Many of us carry around a “bucket list” of things we’ve always fishing, watching a child’s music recital, wanted to do, or would love to playing ball. One grandmother asked do one more time. Often you can for a videotape of herself baking find ways to turn even unlikely cookies with her granddaughter. Try wishes into realities, with a few turning on a camera set up on a tripod modifications. during dinner on a good day. Play back One 92-year-old hospice patient, these relationship-building moments a former flight instructor who later, on not-so-good days. once owned an airport, wanted 6 Marlene Prost is a freelance writer who specializes in writing about health care issues. to fly again—something he Leave a work of art hadn’t done in more than Few of us ever get to write that 40 years. His loved ones novel or record that hit song. But the arranged for him to go up creative process can take on urgency in a four-seat plane with a when time grows short. One 35-year- flying instructor, his daughter, old hospice patient wrote a book for and a nurse. In mid-flight, Touching Lives 15 H E L P I N G a H A N D S b (continued from page 5) suffered more physical and emotional distress than those whose kin died to take a shower, she’d cringe,” Alicia “When I would try to lift my mom with hospice services. says. “The nurse would show us how: When Jennifer Wall Alamdari was ‘Put your arm like this, let her move Hospice helps with grief support, 16, her 56-year-old mother was dying with you, move the sheets this way.’ I both now and later. of cancer at home in Crutchfield, loved that they took the time to show Grieving doesn’t begin at a loved one’s Kentucky. “My father and I were us all those little things. And I could death. “Grief started the day Steve call any time with questions—they truly were angels.” completely unequipped to take care of was diagnosed,” says Tyra Damm of her,” she remembers. “It was such a Frisco, Texas. Her 39-year-old husband relief to know that someone skilled was coming to take the weight off of us and that mom was being properly cared for.” Because her dad had another adult to talk to and consult Hospice care is designed to support the entire family at the end of life. of 15 years eventually died of a brain tumor they soon referred to as the “Damm spot.” The emotional pain of losing a loved one, felt before death, is called with, Jennifer felt she gained some anticipatory grief. A 2001 study in space “to be a kid again.” The Gerontologist called anticipatory She also learned ways to cope grief equivalent in intensity and with impending loss. “Our hospice breadth to the response to death. nurse showed me ways to be close It’s real grief—and not surprisingly, to my mom and give her comfort: it’s very common among those who massaging her hands and feet with care for the terminally ill. lotion, reading to her, buying her a Beginning while Steve was in new nightgown, making food that hospice care and for 11 months after was easy for her to swallow (her throat he died, hospice grief counselors met was raw from the radiation),” she says. with Tyra and her two children, “Hospice helped us find ways to be Cooper, then 8, and Katie, 4. The there for her and ourselves.” children’s therapy included music and artwork—“things they could control, Hospice helps with hands-on when they couldn’t control everything guidance. else going on,” Tyra says. “They When Alicia Garate-Golembiewski’s helped me work through things like mother was dying at her San Francisco Steve’s first birthday without him and home of mesothelioma, a rare form of what was normal for grieving kids cancer caused by asbestos exposure, when I wondered about how to she liked her hospice caregivers so well discipline,” she says. she called them her “angels.” For Alicia, “I was surprised to get grief help for these angels were teachers as well. both me and the kids even before Steve That’s because in addition to providing died,” Tyra adds. “We all needed it.” V hands-on care like bathing, changing sheets, and medication dispensing, hospice workers also show curious families how to manage common situations when they can’t be present. 16 Touching Lives Paula Spencer is a writer based in San Francisco and Chapel Hill, North Carolina. When each of her parents used hospice services, she gratefully experienced the hospice care described in this article. a H O S P I C E E L P A S O b Hospice El Paso’s Center for Compassionate Care–West T his summer Hospice El Paso opened El Paso’s CCC-W offers all the amenities of a cozy, home-like first stand-alone inpatient facility—the Center for atmosphere in a warm and welcoming setting. Pets are Compassionate Care West. (CCC-W) invited to drop by for a visit. Each room is uniquely decorated This 16-bed facility provides around-the-clock services and can accommodate patients of all ages. In addition, the and comfort for patients in need of care beyond what can distinctively decorated pediatric room has all the facilities be provided in a home setting. The unit is staffed by needed to provide for a quiet, stress-free environment for Hospice El Paso’s professional interdisciplinary team that children and parents in need of the highest quality care. specializes in assuring that every patient and family member The family and break room is a comfortable and relaxing receives individualized 24-hour care. The unit and team are place for discussion or a quiet rest. designed to provide the essential and appropriate care so The Hospice El Paso Center for Compassionate Care West that the patient can return home as soon as possible. is located at 1575 Belvidere on the grounds of The Monte The CCC-W professionals—nurses, physician, pharmacy, Vista at Coronado. Hospice El Paso welcomes tours of the social worker, chaplain, volunteers—manage pain and new unit and is happy to answer any questions you may other symptoms of the life-limiting illness while enhancing have. Please call us at 915-532-5699. V the quality of the time remaining for the patient and family members. www.hospiceelpaso.org 17 a H O S P I C E E L P A S O b The Five Stages of Life Reconciliation by David Kessler O Expression ur belief systems shape our lives. We believe that if we are educated, we will get a good job. If we accumulate money, we will be safe from hunger. If we eat right and exercise often, we will be healthy. We believe that pills will work, 1 Many people have trouble accepting the demise of their physical selves because they’re blocked by anger. We all judge, hate, blame others, become furious and behave in petty ways. Sometimes we’re justified in doing so; usually we are not. To heal and ready ourselves for peace, we must express our feelings without fear that we will be punished. You don’t have to tell that medical technology will keep someone you hate them. You can say it to a trusted friend or scream it into disease at bay, and that doctors will your pillow. Once you do, the angry thoughts begin to dissipate. You can also save us and our friends and family. tell God why you’re upset. I’ve worked with people from various faiths who Inevitably, our beliefs fade as we feel they need permission to become angry with God. God understands realize that we will not live forever, that you need to express and release your feelings in order to love. no matter how smart, rich, or healthy Responsibility we may be, and no matter how good our doctors are. As we must let go of everything we have known, faith allows us to escape the fear that all is random and meaningless. My co-author of two books, Elisabeth Kübler-Ross, has described the five stages we go through as we 2 depression, and acceptance. She always said they are not linear, not everyone goes through every stage, There is a similar approach to aspects of life reviews that our loved ones may go through. They are aspects of a large life review that will sometimes the quality of their lives. Specifically, it helped them take responsibility for their actions, thoughts, and lives. They know that they’re not to blame for their diseases and that dying does not mean that they have somehow failed. They also understand that they have played a role in all that has happened to them in life. face death: denial, anger, bargaining, and they are as unique as we are. People have often said that facing a life-challenging illness has improved 3 Forgiveness To forgive does not mean to accept bad behavior. When we forgive, we release ourselves from the binds of hates and hurts. We forgive ourselves and others because we want to die whole. We’re afraid that forgiving the people who have hurt us is the same as absolving them of their misdeeds. But we forgive for our own sake, when we realize that holding on to challenge our loved ones the most. grudges forces us to live in unhappiness. Forgiving ourselves is just as much It is helpful to understand these five in a part of spiritual growth as forgiving others. Our loved ones are often hard particular: expression, responsibility, on themselves at the end, remembering all the things they’ve done wrong forgiveness, acceptance, and gratitude. and wondering if they can ever be forgiven. I tell them that if they feel that they cannot forgive themselves, they should simply ask God or a Higher Power for help. We can die in unforgiveness; some people do die that way. But many choose to make way for inner peace by forgiving. 18 www.hospiceelpaso.org ccccccc 4 Acceptance I remember very well the stout, 42-year-old banker who grasped his dying father’s shoulders as the older man lay in his hospital bed and practically shouted at him: “Dad! Fight it! Fight it! You’ve been a fighter all your life. You can beat this!” We live in a fix-it society, with the technology to repair many broken things at our fingertips. We forget that we’ve all been deliberately designed to “end” one day. When that ending happens, MARTIN FUNERAL HOME WEST there’s nothing to fix. Optimism and a fighting spirit are good things, but at a certain point, optimism becomes denial. It’s important that our loved MARTIN FUNERAL HOME WEST ones be willing to fight when fighting is appropriate, but they will all face that moment in life when it is time to stop fighting, to stop treating death as the enemy. This is not giving up. It’s accepting what is happening, riding the horse in the direction it’s going. Once the final death process has started, it cannot be stopped, any more than a woman in labor can be prevented from delivering her child. We don’t have to like what we accept. Accepting that life is complete is perhaps the most difficult of the steps toward spirituality. There may be things we wish had happened—more time, more opportunities, and more experiences. But their absence doesn’t mean that a life was incomplete. 5 Gratitude Having expressed one’s feelings, taken responsibility for all that has occurred, forgiven oneself and others, and accepted what is now occurring, the person on a spiritual journey becomes profoundly grateful for his or her life, for both the good times and the bad. Grateful for the bad times? Yes. Fifty-four-year-old Mark, who lost his eyesight in an accident at age 15 and was now dying of lymphoma, told me he remembered the colors. His favorite was blue. “Some are born blind. They have never seen blue. I am so thankful; I can still see it in my mind.” Expression, responsibility, forgiveness, acceptance, and gratitude all lead to reconciliation. As friends and family, we are the best and safest support our loved ones have for these possible reviews. These are the challenges I’ve seen countless people take on the road to spirituality. And the peace they attain is medicine for their souls. V HARDING-ORR & MCDANIEL MARTIN FUNERAL HOME CENTRAL MARTIN FUNERAL HOME EAST HARDING-ORR & MCDANIEL KASTER-MAXON FUTRELL MARTIN FUNERAL HOME CENTRAL RESTLAWN MEMORIAL PARK MARTIN FUNERAL HOME EAST KASTER-MAXON FUTRELL RESTLAWN MEMORIAL PARK Proudly supports Hospice El Paso David Kessler is author of The Needs of the Dying and co-author of On Grief and Grieving, with Elisabeth Kübler-Ross. ccccccc Did you know that you have the right to choose your hospice care provider? W “ e’re glad we chose Hospice El Paso.” Hospice El Paso patients and their families are glad they made their decision to call Hospice El Paso. After they saw and experienced all of the services and benefits that were available, almost all said they would have called sooner. We’re here to help! Call us today at 915-532-5699 or visit us online at www.hospiceelpaso.org.
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