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The Art of Caregiving
How to Lend Support & Encouragement to Those with Cancer
By Michael S. Barry
David C. CookCopyright © 2007 Michael S. Barry
All rights reserved.
A Privilege and a Challenge
Wisdom is supreme; therefore get wisdom. Though it cost all you have, get understanding.
Most cancer patients and caregivers are quietly frantic; they hunger for solid and dependable advice. A few minutes in the cafeteria of a cancer hospital will convince you of that. Patients and their caregivers often sit with other patients and their caregivers, sharing their experiences and giving advice about what seems to help or work and what doesn't. Further, the information available on cancer and caregiving through the local bookstore or the Internet is endless. This book is different in that it allows you to enter into the mind of a Christian pastor and chaplain who ministers to and counsels cancer patients and their caregivers every day all day long. What I have to share that is perhaps somewhat unique is my philosophy of caregiving, a philosophy that can be applied to various caregiving situations and is based on the biblical concept of joy.
I take seriously Psalm 118:24: "This is the day the LORD has made; let us rejoice and be glad in it." Why should we rejoice today? Because not one of us knows how long we are going to live. Today is the only day we know we have, so why not live joyfully?
There is a practical side to my philosophy, though. It is not only biblical; it also serves as a counterbalance to the difficulties we all face in our attempts to help a loved one survive a disease. Here's some of what I know about you:
You Would Do It Anyway
The diagnosis of cancer in a loved one creates feelings of fear and anxiety, but even more common is the feeling of desperation. Soon thereafter we are visited by the unwanted and uninvited feelings of anger, hopelessness, despair, and sheer exhaustion. As unwelcome as these feelings are, and as much as you might like to hand over the caregiving to someone else, truth be known, you would do it anyway, the weariness and difficulty notwithstanding. Consider the following statistics based on a survey done by the University of Pennsylvania Family Caregiver Cancer Education Program.
Cancer Caregiver's Profile:
82% are female.
71% are married.
61% have been providing care for less than six months.
54% live with the patient for whom they are caring.
47% are more than 50 years old.
36% reported that caregiving required more than 40 hours of time
Physical Problems They Encountered:
70% reported taking between 1 and 10 medications per day.
62% reported their own health had suffered as a result of caregiving.
25% reported having significant physical limitations of their own.
Emotional Problems They Encountered:
85% reported that they resented having to provide care.
70% reported that their families were not working well together.
54% reported that they visited friends and family less since assuming their caregiving role.
35% reported that they were overwhelmed by their caregiving role.
97% said their roles were important.
81% said they wanted to provide care and could not live with themselves if they did not
assume caregiving responsibilities.
67% said they enjoyed providing care.
In spite of the personal suffering, time and energy expended, and risk to your own physical well-being, the truth is you would do it anyway! What does this say about you? It says you are kind, compassionate, and caring. Further, it says you are willing to assume responsibility for the well-being of another person at a time when that person is very vulnerable. You are the Good Samaritan. You are exhibiting selfless love, giving, in part, your life for the sake of another. In no small measure, you are walking as Jesus walked (1 John 2:6). Your role is important, and so are you! But here's the point: If you are going to do it anyway, why not allow joy to lighten your burden and enhance your personal happiness along the way?
You've walked into a situation that many in the world are walking away from. You obviously care a great deal about someone who is ill. I understand what you are going through. I have many times walked the road you are traveling. I want to congratulate you on your courage. Walking into a difficult situation while others are walking out is an amazing act of sacrificial love.
But your choice to care for your loved one, whether a selfless act of love or a decision forced on you by necessity or perhaps something in between, doesn't mean you're prepared to give quality care. You may feel woefully inadequate to help your friend. You may be frightened, depressed, or angry that cancer happened to your loved one and you. You may never have needed to play a caregiving role—and it may seem foreign to you. Or you may have played this role too many times and are weary and grieved about going through it again.
Nonetheless, here you are. The good news is you're taking on a role that can help both you and your loved one grow spiritually, emotionally, and even physically. This is a time you both may come to see as a blessing, one of the best times of your lives. What I offer you is one way of caring for others—a model for engaging a role that you feel called to perform but may feel unprepared or inadequate to assume. You may have never been sick a day in your life and therefore don't know how it feels to need someone. Maybe you haven't had a good role model to show you how to take care of someone who is ill.
I don't presume you have any experience as a caregiver, though you might have far more experience than I. I simply am making a case for engaging in one particular model of caregiving that I have found helpful.
My Best Advice for You
Cancer is like being caught in an undertow. Upon realizing that they are in danger, people usually panic and think, I'm going to die! Furiously they try to swim to shore. However, according to the experts, they are the ones least likely to live. Consider this advice.
When caught in a rip current [undertow], one should not fight it, but rather swim parallel to the shoreline in order to leave it. If you see a person caught in one, yell at them to do so. Floating until the current disperses into deeper waters is another method of surviving such a dangerous incident, but it may leave the swimmer farther out from shore.
Floating until the current disperses into deeper water? Sounds crazy, doesn't it? Allowing the wave to take you further away from the shore? And yet, that is what survival requires of us. How is that any different than faithfully trusting in God? During the undertow times in our lives, our human nature is to panic and struggle, when actually just the opposite will help us overcome our problems.
The expert advice is, "If you see a person caught in one, yell at them to do so." OK, so I'm now "yelling" at you. Calm down. Lie on your back, so to speak. Allow God to care for you. Trust him. Don't panic, even though it makes sense to do so. The ocean's pull might seem to take you away from safety, but it creates your best chance for survival. Trust God. Now go yell the same advice to your loved one.
The Goal of Caregiving
The goal of caregiving is to help your loved one thrive during the process of cancer treatment as well as after, without compromising your own health and well-being. Your goal is not to heal. God does that. You are not God. The doctors are not God. All any of us can do is offer our best to comfort, support, love, and care. If we do that, at the end of every day we will be able to put our heads on our pillows knowing that, our limitations notwithstanding, we did the best possible job to help relieve suffering and inject joy into the life of our loved one.
Cancer patients and their caregivers have much to learn from this story about heart patients:
Not everyone in Cardiac Rehab [looked fearful and anxiety ridden]. About one-third of the group came in every day looking as though they'd just won the lottery: They'd looked death in the eye—and survived! ...
Every afternoon, all the Phase Three Rehab guys worked out on our various exercise machines.... I came to think of the two groups as the Happy Guys, who were in love with life, and the Scared Guys, who just hated the idea of death. One thing quickly became obvious: Virtually all of the Happy Guys were on the cusp of recovery, with ruddy cheeks, good endurance, and strong numbers on their cardiac health indices. But most of the Scared Guys were ghostly and tentative, with weak numbers.... I realized that there was something happy people know that unhappy people don't: No matter what happens in life, there's always something left to love, and the love that remains is always stronger than anything that goes against it.
Cancer patients neatly fall into these same categories—happy or scared—with the same general results. Helping you and your loved one learn how to be one of the "happy guys" is really what this book is all about.
The hospital I am proud to represent adheres to what we call the "Mother Standard," which is our way of saying we are to treat all patients as if they were as near and dear to us as our own mothers. We do our best to accomplish this goal every day. We want to enlist you as a fellow caregiver to seek this standard in your own caregiving. We believe one of the best ways we can serve a patient well is to respect the vital role you play as a member of the health-care team. Our hospital's culture is a caring and compassionate one, which means we care about you and desire to shower you with kindness and appreciation as well as remind you of your important role in the life of your loved one.
One way we partner with you is to create an optimum environment for healing. A gardener knows she isn't the one causing the garden to grow. God does that. However, certain activities increase the likelihood of good growth, such as watering, fertilizing, using quality seeds, and regularly weeding. Once a gardener has done all this, the rest is up to God. Like gardeners, we health-care professionals understand our limits, but we also understand the kinds of activities that increase the probability for a successful outcome. Therefore, our "Mother Standard" requires us to do the following:
Care about the patient as though he or she were a member of our own family. For us, there is no substitute for sincerity, and we sincerely desire wellness for every patient we see. This is our obsession.
Explore ways of enhancing a patient's quality of life—how we can best serve him or her during this time of need. This often includes caring for the caregiver.
Do our best to provide relief from suffering. We believe true relief comes through treating the whole person.
You are invited to share in our obsession for life—life abundant, healed, balanced, unstressed, and eternal.
If we focused our caregiving energies solely on the administration of drugs or the execution of surgical remedies, we would be irresponsible. As critical as these are to creating the optimum environment for healing, we know too much about the complexities of disease and the human condition to merely treat the condition or symptoms without addressing the underlying causes. Therefore, our treatment requires us to explore a little harder, probe a little deeper, and engage our patients at different levels of emotional and spiritual meaning to provide the quality of care that would be suitable for our own mother.
No One Is Cancer Free
Simply shrinking or removing a tumor isn't good enough for us. Why? Consider this: The average adult has between sixty and a hundred trillion cells in his or her body. Our bodies produce millions of cancer cells every day. In other words, no one is cancer free. When we speak of being cancer free, what we mean is that the cancer in our bodies hasn't formed into an identifiable tumor. This is one of the primary reasons the Cancer Treatment Centers of America believes in the importance of pastoral care and mind/body medicine.
We know that if we do not treat underlying spiritual and emotional issues, the likelihood of the immune system regaining its ability to successfully defend the body against the continual presence of cancer is less likely. We know that if we don't treat the whole person, another tumor might appear. True, it might appear anyway, but it won't be due to our neglect of the wide range of needs we know our patients are experiencing. Excellence demands more.
Your Attitude Counts
Right now, the most important thing you have going for you (or against you) may be your attitude toward disease, in general, and your loved one's plight, in particular.
Ordinarily people prefer to be around others who are happy and upbeat. Although there are times when we want people to identify with our pain and empathize with our sad and difficult situations, we usually do not seek out depressed people to befriend. Why?
Because depressed people depress people! Bored people bore people! Miserable people have a way of dragging us into their world of sadness. It is true that misery loves company. We all remember times when we've been unhappy and friends came to visit us. But they didn't come to make us miserable; they came to cheer us up! To gladden our hearts. To replace our frowns with smiles. What kind of friend would we be if we left our friends more depressed than when we found them?
Caregiving is a great privilege, and it is as demanding as it is rewarding. To do it well requires us to examine our own attitudes. We need to assess our beliefs about disease and discomfort and how we face difficulties in our own lives. Why? Because your friend is depending on you, and if you fear death and cannot see the benefits of disease (the lessons our bodies are trying to teach us), you may find your capacity to care for your loved one diminished and your ability to be light during his or her period of darkness dimmed.
Caring for your loved one can be one of the most rewarding experiences of your life—a time when you experience optimum emotional, spiritual, psychological, and physical well-being, so that in return you are able to help your loved one share similar experiences.
Water cannot flow higher than its source. The source of a river or fountain is the highest geographical elevation. As gravity applies itself, the water flows from its highest elevation to its lowest. The Mississippi River is the longest and largest river in North America. Its source is Lake Itasca in the Minnesota North Woods. It flows through the midcontinental United States, the Gulf of Mexico Coastal Plain, and its subtropical Louisiana Delta. It is all downhill from Lake Itasca.
In other words, you will not be able to raise your loved one's spirits any higher than your own spirits are raised. A positive attitude can be infectious! A strong will to live can be shared! Reasons to fight for your loved one's life can be discovered, but little or none of this will happen if the caregiver is not optimistic and otherwise happy. How can a caregiver convincingly convey the need to fight for health and longer life if he or she is indifferent and unenthused about life and living?
The Scriptures teach, "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you" (1 Thess. 5:16–18).
People of faith, especially Christians, are instructed to be joyful always and are reminded that a joy-filled life is God's will. Yet joy eludes many people, especially those who are living an already busy life and are responsible for others' well-being. Ask any parent, teacher, or CEO!
Fish! is a short yet powerful book about a woman who finds herself working in a "toxic energy dump." She walks by Pike Place Fish Market, where there are a number of men working behind the counter. Suddenly she sees a fish flying through the air and hears one of the men yell out, "One salmon flying away to Minnesota!" only to be echoed just as loudly by another, "One salmon flying away to Minnesota!" Soon thereafter another man tosses a coworker a bunch of crabs, yelling, "Five crabs flying away to Wisconsin!" This woman saw that the men at Pike Place Fish Market were filled with lively energy and were having a joyful time throwing fish around all day, and she began to wonder why she wasn't enjoying her job, which in her mind was much more important than selling fish. As she reflected on this, she decided her life was too precious to spend any time at all, let alone half her waking hours, in a "toxic energy dump" filled with people who were a drag to be around—unhappy and unfulfilled.
Excerpted from The Art of Caregiving by Michael S. Barry. Copyright © 2007 Michael S. Barry. Excerpted by permission of David C. Cook.
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