Guilt and Shame at the End of Life

Living with a life-limiting illness can be much harder when you blame yourself
Photo a lake and trees in the distance symbolizes the isolation of grief and shame

Credit: whatsyourgrief.com

Make the most of your regrets; never smother your sorrow, but tend and cherish it till it comes to have a separate and integral interest. To regret deeply is to live afresh. ~ Henry David Thoreau

Joe sat in his living room, looking pale and uncomfortable and visibly working to breathe. Propped in a recliner, oxygen tubing snaking through his shirt, around his ears and into his nose, he spoke slowly and with considerable effort. I told him there was no need to speak with me if he didn’t feel up to it, but he held up his hand — the gesture obviously intended to tell me “No, this is my idea.” So I waited and let him talk.

“This is all my fault, “ he said. “I did this to myself.” Then he stopped to rest.

“I was stubborn and stupid. My wife and kids begged me to quit, but I wouldn’t listen. Now I’m dying, and they’re paying the price.”

Technically, Joe was right. A pack-and-a-half-a-day smoker for 45 years, he was diagnosed with chronic obstructive pulmonary disease at the age of 60. His doctor explained that quitting smoking at that point would not cure the disease or reverse the damage to his lungs. But it could keep his symptoms from progressing as quickly as they would if he kept smoking. And quitting would almost certainly increase his lifespan and give more quality time.

But Joe was stubborn, as he readily admits. No one, least of all some doctor, was going to tell him what to do. A tough-talking, burly man, Joe spent much of his life driving an oil truck, delivering heating oil to customers in rural New York. At each delivery, he would drag a heavy hose across customers’ front lawns to pump the fuel into underground tanks. It was backbreaking work. But it paid well, and Joe was proud that he had provided his family with the kind of life they deserved.

A lone tree in water symbolizes guilt and shame

Credit:mikkolagerstedt.com.

He wasn’t the kind of man who took advice well.

So Joe kept right on smoking. Eventually, he would light up and immediately start hacking and gasping for air. But even then, he wouldn’t stop. His wife and daughter begged him to quit. His son threatened to take his cigarettes away. But for Joe, smoking had become a kind of existential line in the sand. Perhaps it was his way of maintaining his independence as his health deteriorated and he was no longer able to work. Perhaps it was simply that smoking was a pleasure he didn’t want to give up, no matter what the consequences. Whatever the reason, he kept smoking — right up until the first time he found himself hospitalized with pneumonia and on a ventilator in the ICU.

When he got out of the hospital, Joe finally quit. But it was far too late for abstinence to do him or his family much good. He had end-stage COPD, and his doctor said he would most likely die within the next few months. And while he was receiving hospice care at home, most of the burden of caring for him fell on his wife and children. And that, Joe said, is what caused him the most pain.

“I only thought of myself,” he said, tears welling up in his eyes. “I thought, ‘I’m OK with dying as long as I can live my life the way I want.’ I never thought about what this would do to them.”

Joe paused to catch his breath, then went on,  “Now it’s all I think about. How selfish I was. How I’ve made their lives hell….I’m so ashamed.”

Guilt and shame are difficult to bear when we are in good health. But at the end of life, they can be a heavier burden than the symptoms of disease or even the fear of death. For people like Joe, who chose to continue smoking despite the certainty that it would hasten his death, it can be so overwhelming that it stands in the way of the important task of finding a way to exit the world in peace. Even as his wife and children tried to assure him they did not blame him for what was happening, it was nearly impossible for him to let go of his guilt and shame and overwhelming feelings of regret. 

Joe didn’t have a lot of time left. So after our conversation, I spoke with his hospice nurse, who came up with a plan. Joe had a lot of trouble speaking, but his hands were still steady and his mind was fairly clear. So she asked him if he would like to write a letter to his wife and each of his children, telling them how he felt. If he was so inclined, he could frame the letter as an apology for his stubbornness. Or he could simply use it as a way to express his love for them and tell them how hard it was to say goodbye.

Cat tails in fog symbolize emerging from guilt and shame

Credit: brookpennington.com

As we expected, Joe resisted the idea at first. But after a few days, he asked his nurse if she could get him a pen and paper. There was nothing in the house but a yellow legal pad and a ballpoint pen. Joe said that would be fine.

Over the next few weeks, Joe wrote — first one letter, then another and another, pouring out his heart to his family and friends. I never read a word of what he wrote. But I do know that, when his death finally came, he was surrounded by the people who loved him and no longer consumed by regret.

“He was really, really peaceful,” his wife told me recently. “He knew that he was a stupid ass to keep smoking all those years, but he seemed to have let it go.”

“Maybe, in the end, he knew that all of his guilt and shame weren’t going to change anything. Or maybe he saw that he was hurting us more by refusing to accept the fact that we forgave him and didn’t blame him for his disease.” 

“Or maybe,” she added after a few moments. “Maybe he finally just decided to forgive himself. 

“Forgiveness is giving up the hope that the past could be any different.” ―Oprah Winfrey

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.

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One Response to Guilt and Shame at the End of Life

  1. A beautiful example of the positive difference a hospice nurse can make in the life of the patient and his family. Thank you for sharing this powerful story.

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