Connecting through Compassion
Connecting through Compassion
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“The last weeks of Gordon’s life were spent with someone I barely knew and didn’t know how to approach. It took me two years of counseling to get through the scars. It didn’t have to be that way for me. And it certainly doesn’t have to be that way for you.”
–Joni Aldrich
 
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A Look Inside the Book

More than 50,000 Americans will be diagnosed with a primary brain tumor this year, which means the brain is the primary source.

The prevalence of brain metastasis is estimated to be 120,000-140,000 per year. Metastatic brain cancer indicates that the cancer spread from another location.

Brain cancer accounts for 20 percent of cancer deaths annually.

TABLE OF CONTENTS

CHAPTER ONE: Bigger Than the Cancer Itself

“Like a thief in the night, the cancer had secreted away some part of the essence of Gordon right in front of my eyes. It had not changed how he looked, or even how he sounded. And the anger was always there, which punched my insecurities in the stomach.”

CHAPTER TWO: Faced with an Environment of Change

“As humans, we tend to look at things in black and white. We call it face value. We’ve learned to form expectations. We work within social norms. When someone you love has brain cancer, things are no longer in black and white—or maybe even in gray. If you can turn your focus away from the black and white, there are other colors to focus on. It certainly doesn’t mean that the world is colorless.”

CHAPTER THREE: Preparing for Your Journey

“Many of the regrets of people who have lost loved ones to brain cancer—or of those who’ve survived—are because they weren’t adequately prepared for what to expect both in treatments and in the physical and mental difficulties that might result.”

CHAPTER FOUR: Creating a Warm, Comfortable, and Safe Environment

“Neysa says that patients with a brain illness do experience boredom. Try to fill the hours with things that your loved one enjoyed before. Music can be very soothing. If they were sports-minded, watch the games or listen to them on the radio. While television is a good pastime, you should avoid violent programs—your loved one may have difficulty with making the transition between imagination and reality, so it may frighten them.”

CHAPTER FIVE: Using Effective Listening to Connect

“The old methods of relating to your loved one may not work anymore. No matter what the circumstance, stay calm. Losing your patience—no matter how exhausted you are—will build a roadblock instead of a bridge. Think of it this way: If you lose your patience, you lose your patient.”

CHAPTER SIX: Patient Communication May Be an Issue

“Neysa found Jim looking outside at the snow falling on the deserted street. He turned and asked her where the ‘livers’ were. Neysa thought he was talking about meat. She was puzzled. ‘Livers?’ Jim’s sister helped translate: ‘He’s asking where all of the people are that live here.’”

CHAPTER SEVEN: The Line Between Lack of Inhibition and Simple Innocence

“We are taught social inhibition almost before we say our first words—right after ‘Mom’ and ‘Dad,’ it’s say ‘please’ and ‘thank you.’ Brain cancer patients may lose the social niceties we’re used to, which may make them abrupt, rude, and even sometimes inappropriate.”

CHAPTER EIGHT: Changes in Personality, Behavior, and Emotions

“Anger from your loved one may come from frustration. It’s like turning up the volume on the radio—they want to be heard. You’ve heard the old saying that the squeaky wheel gets the grease? If you hear the need, the patient feels that you’ll try to do something about it.”

CHAPTER NINE: Memory Changes and the Resulting Confusion

“When we’re born, our parents name us based on their favorite names. By no means does that title make us who we are inside and outside. Yet one of the first things that people will tell you after a visit to a nursing home to see their ninety-year-old grandmother is, ‘She didn’t remember my name!’ It can be very disturbing when someone we love forgets our name. But have they forgotten who we really are? Maybe, maybe not.”

CHAPTER TEN: Questions about Brain-Related Paralysis

“Gordon asked if he had been in an accident. Isn’t an auto accident or a falling accident what we expect to lead to paralysis? It was as though the two years we had fought against his cancer hadn’t existed. Since he had spent so much of his life driving vehicles, the loss of mobility probably solidified his worst nightmares from the road. When he asked, we told him no, that it was the cancer. That only seemed to confuse him more.”

CHAPTER ELEVEN: Coping with Impaired Judgment

“Acknowledge the emotions of fear and loss of control from the patient’s viewpoint. Obviously, their independence is threatened, and that makes them lash out.”

CHAPTER TWELVE: Irritability or Anger—Look for the Stimulant!

“Gordon was very angry in the final weeks of his life, and he sometimes looked at me with a hateful glare. I know that he loved me and would never have acted this way toward me under normal circumstances. Once I even asked him why he was looking at me like he hated me, and he denied it. Bitterness and resentment may mean that your loved one wants something from you that he or she isn’t getting.”

CHAPTER THIRTEEN: Indifference, Sadness, or Depression

“Lack of interest in something that they usually enjoy—such as music—is an indication of depression. Sit and talk with them to explore what’s happening: ‘You seem down. Is something new happening for you? Is there anything that might make you feel better?’ Try a different route if they won’t open up to you.”

CHAPTER FOURTEEN: Concerns for the Caregiver

“It’s not a matter of supplying basic needs. It’s starting from scratch without knowing which direction will come close to working. Needs may change from moment to moment, and they may be more complex than you ever imagined. Simply put, you’re caregiving in an environment that’s not normal with tools that are designed to work within the normal scheme of things.”

CHAPTER FIFTEEN: It’s a “We” Thing—Impact on Family and Friends

“Difficult challenges never seem to happen at an opportune time or in an opportune place. When a family’s normal support system is not around, the help may have to come from new friends, churches, and others in the community. It’s amazing how many people truly want to help, if you’ll only ask.”

CHAPTER SIXTEEN: Understanding Anticipatory Grief

“One obvious downside to anticipatory grief is witnessing your loved one’s struggle with his or her impending death. As their condition worsens, you may grieve with each downturn and feel helpless. You may feel as if you are living with an empty pit in your stomach.”

CHAPTER SEVENTEEN: Dealing with Difficult End-of-Life Topics

“From one of our contributors: ‘This happened toward the end of my husband’s life. I wasn’t sure at the time if he was transitioning to the next world, but he would talk about people who weren’t in the room. I simply went along with what he was saying for fear of confusing him even more.’”

CHAPTER EIGHTEEN: More Than Just Difficult Thoughts of Death

“When we talk about suicide and assisted suicide in a terminal cancer patient, these topics shake our moral belief foundation. My personal concern is this—I’ve seen a lot of ‘terminal’ cancer patients walking around many years after their death sentence. If we talk about suicide or assisted suicide in a terminal cancer patient with brain cancer, my concern becomes wrapped around three words: ‘of sound mind.’”

CHAPTER NINETEEN: Dealing with “What Ifs” and “If Onlys”

“As you go through the intense process of healing, remember that the deepest wounds will fester and spread if left exposed and untreated. It’s important to close them and allow yourself to move forward. Scars are something that we all have on the inside and outside, but scars don’t lead to a painful and senseless infection of our spirit.”

CHAPTER TWENTY: Finding Your Beacon through the Storm Called “Grief”

“Counseling is not for the weak, but for the strong. We have a stigma in our society that going to a ‘shrink’ means you are mentally unstable. I think there is nothing unstable about knowing that you need help to sort out things that have rocked your world that are hard to deal with.”

 
   
HOPE