Imagine that you’re preparing for a thirty-day trip to a foreign country and you’re limited to taking only what can be carried in a backpack. Your decisions on what to take or leave behind will determine the quality of your experience. Too many items and the weight will be burdensome. Not enough of the right ones and you might be forced to neglect some basic needs.
We make decisions of this type daily. Take what’s important, leave behind what isn’t. But we tend to oblivious to the importance of these decisions for possibly the most momentous journey of our lives–our death.
As a bedside hospice volunteer in the San Francisco Bay area for the past seven years, I’ve found that the ideas and emotions people carry with them through life, as was the case with Joyce, often determines the quality of their death. During one visit, she leaned back in her chair and softly said, “You know, dying is such hard work.”
For two months her physical condition had been steadily declining and I assumed she was referring to her pulmonary problems. She paused, then said “I’m not talking about what’s happening to my body.” Pointing to her head she continued. “The hard work is what’s happening up here.”
Although specific end-of-life issues were as numerous as the number of people I served, the type of “hard work” expressed by Joyce and others mostly fell into four categories: the difficulty of simplifying the present, forgiving the thoughtlessness of others, wanting desperately to be forgiven, and letting go of the dreams that would never be fulfilled.
Many of my patients experienced a stimulus overload as they got closer to dying. For example, the CEO of a multi-national company had difficulty each morning deciding what he would have for breakfast. A professor who spent his life analyzing language had problems following simple conversations. A carpenter who built houses couldn’t complete easy manual tasks. For patients with dementia or other neurological problems, the difficulties were clearly organically-based. But for the CEO, professor, carpenter, and many others, I believe the hard work of dying involved an information processing problem: too many issues and not enough time to come to terms with them.
For many patients, their decision to limit the number of people who could visit was helpful, although often misunderstood by relatives and loved ones. For others, cutting back or eliminating life-long interests reduced the overload. And for some, not talking about highly emotional issues was effective.
Anne, a well-known poet, chose a unique way of simplifying her life: she gave herself a going-away party. She invited friends to her hospice facility, and after everyone told her how their lives were changed by knowing her, Anne called each person individually to her side. In a whisper she said something and then gave each person a single sheet of paper on which one of her poems was written. When all were given away, she turned calmly to everyone and softly said, “Now, I’m ready to die.” When Anne described the party to me, I asked if she could recite one of her poems. With a smile she said, “I can’t, I don’t own them anymore.”
The pain people experienced from their past often followed them into their deaths. I had been visiting Marie weekly for five months. Every visit began and ended with the story of her co-workers’ cruelty, spoken with a freshness you’d expect from a recent event, rather than something that had occurred more than fifty years before. Until she went into a coma, Marie regularly repeated the story in detail and painfully relived the emotions it generated. For her and many others, the inability to forgive the unskillful acts and words of others made the time leading up to their deaths emotionally difficult. But for some people, such as Ned, it never was too late to forgive.
I started visiting Ned almost every day after he expressed a fear of dying alone and asked me to be with him when it happened. Sometimes my visits lasted only a few minutes when he was heavily medicated, but still showed no signs of actively dying. At other times I stayed for hours as he alternated between rambling and lucid thoughts. His AIDS related dementia began rapidly increasing after three weeks.
“Carl, I’m so glad you came,” Ned said to me with his head still on the pillow. I could see that his eyes weren’t focusing and I had no idea who Carl was.
“It’s me, Ned. It’s Stan.”
“I thought you wouldn’t come back.”
“I told you I would.”
“I know it’s been hard on you,” he said barely above a whisper.
“No, I enjoy coming to visit you.”
“You were right telling me to leave.”
“Ned, it’s me, Stan.”
“I shouldn’t have asked you to take me in. I didn’t have the right to ask anything of you. A father shouldn’t do that to his son.”
I didn’t know what to say as he waited for me to respond. I knew continuing to insist I wasn’t his son wouldn’t make any sense. Given his level of delusion, I didn’t think he would believe me. It appeared that he needed his son, right there next to him. I asked myself if I should become part of his delusion; if ethically I had the right to do that. I also was concerned, in the unlikelihood that his son or wife would visit, how they would react to someone impersonating Carl. Or if friends came and Ned told them about a visit from a son he hadn’t spoken to in years. There obviously wasn’t time to ask anyone’s advice.
“It was alright what you did, Dad,” I said.
“No, it wasn’t. I haven’t seen you or your mom in fifteen years and here I am, asking you for a place to stay. Asking you to care for me. You were right telling me to get out of your life.”
As I struggled to find my next words, his eyes seemed to focus and he said, “I forgive you.” Then, just as quickly as the delusion began, it ended in a peaceful look as he drifted off to sleep. I didn’t know the effect of my decision until the day of his death. When I entered his room, a woman was sitting by his side and crying. I could tell by Ned’s breathing and fixed gaze that he was in a coma and actively dying. She introduced herself as a friend and said that Ned was lucid for a few minutes earlier in the morning and told her that his son had visited him. “Then,” she said, “He just smiled and peacefully lost consciousness.”
ASKING FOR FORGIVENESS
Jean had abandoned her children and husband when her daughters were teenagers twenty years before I met her. Now, dying of emphysema, the only thing she wanted was her daughters’ forgiveness. However, despite knowing she was dying, they had refused to see or talk to her. I suggested we write a forgiveness letter. Jean agreed on the condition that “They get it after I die.” For three weeks, she dictated and I wrote. After many starts and stops, and numerous crumpled sheets of paper, we finally had something she felt good about. All of her hard work was contained in two sentences. “Please forgive me. I love you.” It was enough to give her some peace before she died.
Fortunately, not all dreams go unfulfilled. Sometimes completing a simple thing can provide immense comfort, as it did for Vince. He was seventeen, a high school senior with cystic fibrosis, and had more unfulfilled dreams than he had memories. Vince, his family, and all his caretakers knew that he wouldn’t live long enough to attend graduation, so his mother and his school’s principal arranged for a “pre-graduation” graduation at the hospice were he was staying.
Vince, propped up in bed, breathing through an oxygen mask, and dressed in full regalia, was presented his diploma by the principal as a small group of us applauded and cried. That one simple event may not seem significant in comparison with the sheer number of dreams that wouldn’t be fulfilled. But I think his memory of it–which was supplemented by a photograph posted next to his bed–made his death easier two weeks later.
From my hospice friends I’ve learned much about living and dying. In serving them, I’ve come to believe that the baggage I’ll tote with me to my death will determine its complexity and quality. I’ve seen what happens when you wait too long to simplify. When you forget to luxuriate in the present moment. When you don’t forgive the thoughtlessness of others. And when you’re too afraid to ask for forgiveness.
From my friends, I’ve learned the importance of doing all of these on a daily basis. Nothing profound, just simple routine things like appreciating every moment I’m alive. Telling my family and friends that I love them. Expressing gratitude for even the smallest kindness shown to me. Being accepting of the unskillful words and actions of others. And asking for forgiveness when I screw up–which still happens more then I would like.Tags: grief, hope