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People Die as They Live and More So
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
There is a pattern of behavior well-known to those who work with the dying and their families: people die as they live— intensified. Nice people get nicer. Busy people get busier, even if only in their dreams. Quiet people get quieter. Demanding people demand more. Manipulators will surpass their past controlling behavior. This is critically important for caregivers, family, and friends to understand, because to expect the behavior of a dying person to be significantly different from what it was earlier in the person’s life is unrealistic and frustrating.
Most pregnant women have a growing sense of their baby’s personality— how it reacts to movement or rest, how it responds to music or loud noises such as ambulance sirens. We are who we are, and we are wired that way at conception. Our unique behaviors will carry us through life’s challenges, triumphs, and tragedies. Why, then, would we even imagine that any person’s dying would be different from his or her living?
Sam had been a full-time construction worker all his adult life, at least when the lure of fishing or hunting didn’t call him to play hooky. Being a rough-and-tumble sort of guy, he overlooked the bruising that started to show without explanation on his arms and legs. But eventually the dizziness, weakness, and shortness of breath made climbing the scaffolding impossible and even getting on a ladder was dangerous. Everyone was shocked when he was diagnosed with acute leukemia. At age thirty-nine, a stunned Sam took early retirement on disability.
Chemotherapy brought about a remission, but within months the disease was back. A second remission seemed harder to come by and lasted a shorter time. Monthly blood transfusions initially gave him a real boost of energy, but they now achieved diminishing results and were needed weekly. It seemed that the time was fast approaching when even daily transfusions would be inadequate. Sam was now spending most of his time in his lounge chair or in bed. Slowly it dawned on him that he wasn’t getting better; he was dying.
His wife was devoted to him and tolerant of his rowdy ways, but she had described his parenting skills as “missing” on my first visit to the family.
“If it wasn’t work, it was hunting, fishing, or hanging out in the bar with the guys. He just always seemed to prefer being with the guys more than being at home with Crystal and me,” she said.
Twenty-year-old Crystal was a shy and soft-spoken young woman. She sat by her father’s chair or bedside for hours, silently and desperately waiting for him to acknowledge her. As time went by, she became visibly frustrated and angry at his failure to connect. Her agitation baffled him— it was so unlike her— but he was just too exhausted to deal with it, so he would close his eyes and doze.
One day I asked Crystal what she was hoping for.
“You know, one of those heart-to-heart conversations,” she said sadly. “Maybe there’s something important I should know from him, sort of like that final wisdom from your daddy before he dies.” Her eyes filled with tears.
“Did you have many heart-to-heart conversations when he was well?” I asked. She just laughed and shook her head.
No Hollywood Endings
Movies have made everybody think that deathbed scenes are times for openhearted sharing, with high emotions, secrets, and true feelings spilling forth. Crystal was waiting for her father to turn into the caring papa from Little House on the Prairie, when the reality was that Sam probably was not going to be more forthcoming on his deathbed than he had been in his life.
I gently explained this to Crystal and held her as her tears turned into sobs. She realized that Sam’s absence from her life when he was well was a reflection of who he was as a person and a father, and that he was unlikely to change now and give her the fatherly recognition she so desperately desired.
After Crystal and I talked, the social worker on my team, Maureen, increased her time with her and was wonderfully supportive in helping her father but also mourning the death of the little girl’s dream daddy she had waited for so patiently all these years. Maureen was able to help Crystal realize that she was a good and loving daughter and a young woman with much to offer this world, even if her father did not tell her so. Her willingness to care for him and love him, without his approval, was itself a testimony to the wonderful person she was.
I suggested that the family and friends do a “roast” for Sam. They all gathered around his bed late one Friday afternoon and told outrageous stories about him. He had been a crazy, overgrown party animal, and he blossomed upon hearing the stories of his mishaps and poor judgment. “But somehow or other he always landed on his feet!” his best buddy proclaimed. Then he put a big burly arm around Crystal and said, “You know, missy, I remember the day you were born. Your pop was on top of the world! You would have thought no one else had ever had a little girl. And did we hear about every report card and every soccer game you ever won?” he asked his cronies.
“Oh, boy! Did we! Brag, brag, brag— that’s all he did!”
“And he’s so proud of you, too, Denise,” he continued. “He knew how much you had to put up with, and you stuck with him anyway! None of us could ever figure out why, though!” Raucous laughter and the sound of knee slapping filled the room.
I could see Denise’s face soften as her eyes filled with tears of love for her husband. Here was the validation she and Crystal had always yearned for. Maybe it was given to them in a backdoor kind of a way, but it was given to them— in Sam’s way.
One of my favorite sayings is “Don’t try to teach a pig to sing— it wastes your time and it aggravates the pig.” It is not our job to expect, or try to force, someone to act the way we think is right. It doesn’t work, anyway. It is our job to recognize the uniqueness in each person and celebrate it. If you can work with that uniqueness and be realistic in your expectations as you share the final journey, it will go much easier, and your relationships will strengthen, not splinter.
THE BOTTOM LINE
People die as they live, but more so. To expect something different is to set yourself up for disappointment and failure. [135-138]
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