The Art of Caregiving

How to Lend Support and Encouragement to Those with Cancer

Michael S. Barry

• Publisher: David C Cook
• Year: 2015
• eBook ISBN: 9780781414166
• Topic: Theology & Religion
• Subtopic: Religion

When catastrophic illness strikes, someone close to the patient—a spouse, child, grandchild, or close friend—inevitably joins that patient on the arduous journey through treatment and recovery. Surprisingly, health-care professionals largely acknowledge that personal caregivers have more influence over the patient’s experience in the short and long term than any medical professional. That means that if you find yourself in the role of caregiver, you are—or can be—one of the greatest weapons in your loved one’s fight against cancer. Now Dr. Michael S. Barry shows you how to create moments filled with positive energy, hope, abundant love, occasional laughter, and people (including you) who sparkle with a life-giving, joyful attitude, even amidst grave illness.

1

A Privilege and a Challenge

The beginning of wisdom is this: Get wisdom. Though it cost all you have, get understanding.

—Proverbs 4:7

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: “The LORD has done it this very day; let us rejoice today and be glad.” 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, which is not only biblical but also serves as a counterbalance to the difficulties we all face in our attempts to help loved ones survive a disease. Here’s some of what I know about you:

You Would Do It Anyway

The diagnosis of cancer in loved ones 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.

Profile of Cancer Caregivers:

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 fifty years old.

36% reported caregiving required more than forty hours of time per week.

Physical Problems They Encountered:

70% reported taking between one and ten 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 they resented having to provide care.

70% reported their families were not working well together.

54% reported they visited friends and family less since assuming their caregiving role.

35% reported they were overwhelmed by their caregiving role.

Conclusion:

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.

Despite 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 (see 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. 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 am simply making a case for engaging in one particular model of caregiving that I have found helpful.

My Best Advice for You

Being diagnosed with 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.1

Floating until the current disperses into deeper water? Sounds crazy, doesn’t it? Allowing the wave to take you farther away from the shore? And yet, that is what survival requires of us. How is that any different from 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.” Okay, 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 lives of our loved ones.

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.2

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 respec...

Table of contents

• Foreword
• Introduction: Opening the Door
• Chapter 1: A Privilege and a Challenge
• Chapter 2: Principles of Caregiving
• Chapter 3: The Mental Laws of Transformation
• Chapter 4: Believing in Great Possibilities
• Chapter 5: The Roles We Play
• Chapter 6: Be a Real Friend
• Chapter 7: When It’s Hard to Focus
• Chapter 8: Flow into Joy!
• Chapter 9: The Art of Pastime Management
• Chapter 10: A Sacred Time
• Chapter 11: Boundaries in Caregiving
• Chapter 12: Appreciating Our Way into Better Health
• Afterword: Doing All We Can Do—with God’s Help
• About the Author
• Notes