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*This is the final of four essays dealing with the death of a parent      

As many of you know from my previous blog posts, my father elected to go off dialysis since his quality of life was poor while on it. Through diet and a doctor willing to skirt protocol, he managed to delay starting dialysis for a couple of years. But when the time came when his body could no longer fend off toxins through good diet and good luck, he started the life preserving measure two days each week. Knowing dialysis was indeed life saving, he came to learn it was also life struggling and life limiting.

            He gathered his three children and made the following announcement, “When I’m required to increase dialysis to three days, I will be getting off of it. I’ll go into a coma and I won’t know anything. It’s one of the better ways to die.”

            My dad was a planner so he did his research before making this bold statement. He was educated by doctors, learned from his independent research, and read in a pamphlet titled “Choosing to End Dialysis” what he should expect to experience when he terminated this life support. As toxins built up in his body, he would sleep a lot, slip into a coma, and peacefully die. It would take 10 to 14 days.

            Ever vigilant about preparedness during his life, he studied his death, not wanting to suffer, not wanting his family to suffer either. His wife, Beverly, his loyal and tireless caretaker, became educated, as did I and my brother and sister. This should be a quick and painless death for Pops, we learned. Saddened by his decision but knowing how long he had been struggling with renal failure, we geared ourselves for his death, glad that if dad had to leave us, at least it would be peaceful, like riding off into the sunset on a puff of clouds.

            A few months after he had announced his intention to stop dialysis when he was required to increase to three days, we met with Hospice while dad was briefly hospitalized. The nurse was a sweet, soft-spoken woman who told us how Hospice would be there for us in the home as dad wanted to die in his own bed and without tubes and machines burping and blipping around him. She said Hospice would come in two weeks before he stopped dialysis to help with the transition, would be there for him as needed, and when the end was near they would be there 24/7, letting the family know when they thought his death was coming so we could all be there to support his transition.

            Dad was ready. He had done his research. We were ready. We had done our research and respected his decision. Dad chose his last dialysis treatment to be on March 20th.  Two weeks prior, he called Hospice to let them know he would be stopping so they could get started. He was told at that time Hospice wouldn’t start until he actually had his last treatment. Okay, we said, we can deal with that. A minor set back.

            March 20th arrived. We breathed, we cried, we gathered to support Pops, believing within two weeks he would peacefully slip away with Hospice expertly guiding us. I visited him every day. My brother and sister flew in from out of town. Beverly stayed true to her goals: she was on watch 24 hours a day; she kept him clean and safe.

What happened next is true to dad’s favorite saying, the John Lennon quote that marks his memorial benches in Central Park, New York and in Hollywood, Florida.

            Life is what’s happening when you’re making other plans.

            Dad lived 25 more days after stopping dialysis. He did not fall into a restful slumber and then slip into a coma to be transported peacefully to the great beyond. It was a horrible experience, for him and for us. His skin became paper thin that even a slight rub against his sheet caused it to tear and bleed. His whole body itched, and because his skin was nearly transparent, the mere act of scratching caused bruising. His feet and legs swelled. He could not control his bowels. He barely ate or drank. He lost the ability to swallow. His lungs filled with fluid. He experienced pain he hadn’t felt before. He became disoriented, belligerent. He became skin and bones.

            Hospice was no help. They sent a nurse once a week. A doctor came one time for thirty minutes during the 25 days. Each time, the Hospice worker was someone new and Beverly had to explain—often several times during the same visit—dad’s family history, his own long struggle, and his choice to no longer prolong his life. They advised keeping him constantly medicated with morphine. They wanted to take his blood to see if he was anemic to give him a blood transfusion. They offered supplements since he wasn’t eating.

Beverly patiently told them, no, thank you. I don’t know how she maintained her composure. I wanted to scream, don’t you get it, he wants to die, you’re supposed to help him, you’re supposed to help us, that’s what you promised.

            Three days before dad passed, he fell and Beverly could not lift him off the floor. It was two in the morning. She called Hospice and asked for help. We don’t pick patients up when they fall, she was told. Well, she reasoned with the nurse on the other end, we are in crisis and need help.

            “We don’t do that either,” the nurse repeated. “We only manage medications.”

            “I thought you help with crisis management. It even says that in your brochure.”

            “The brochure is misleading. Everyone thinks that. Besides, this is your crisis, not his.”

            “He’s passed out on the floor and I can’t lift him back into the bed. I would say that’s his crisis.”

            “Just because you can’t handle him, doesn’t mean we come to help.”

            Not knowing what else to do, Beverly called 911. One hour later, three EMTs put Pops back in bed. I saw dad a few hours later. His body was bruised and twisted, each breath raspy and difficult. His mouth was wide open as if in a frozen scream.

            If dad had known it would be like this, Beverly and I agreed, staying on dialysis might have been a better choice. At a minimum, if he had known what he would actually experience and how unhelpful Hospice would be, he would have been able to make a more informed decision about ending his life.

            Knowing Hospice was no help other than supplying medicine and medical supplies and sending over a marvelous Pastor who befriended dad and our family, Beverly hired a private nurse.

            Jeannette came at 5pm, sat with Pops, prayed with him and Beverly, sang to him, bathed him. She made Beverly get some much needed and deserved rest. In the morning, staying later then when she was supposed to, she positioned him in bed on his side with a pillow between his legs.  Exactly how he liked to sleep.

            Jeannette told Beverly to stop giving him any morphine, which she did. Dad was no longer belligerent.

            “You need to go,” Beverly told Jeannette. “You’ve been up all night. Make sure you bill me for this overtime.”

            “No, Miss Beverly,” Jeannette said, “getting paid is for man’s work. This,” she looked at Pops, “is God’s work.”

            Four hours after Jeannette finally left, Dad died. Beverly told me to come right over.

            “I’m not calling anyone until you see how peaceful he looks,” she said.

            White pillows surrounded dad, a white blanket lay gently over him. He was dressed in white. He was clean. There were no lines on his face. His mouth was relaxed. Finally, he was at peace.

            With hindsight, we would have done many things differently. Dad would have wanted things done differently too. We would have considered a death unlike the fairy tale one the doctors and others described. We would not have called Hospice as we could have gotten his meds elsewhere. We would not have given him morphine, as it became clear that was the source of his agitation. We would have hired a private nurse much sooner.

In the end, dad did ride off into the sunset on a puff of clouds. Not how the doctors said it would happen, not because Hospice was comforting, but because of Beverly’s vow to keep him safe and clean while he was dying, because of the love of his family and friends, and because of an unexpected angel who truly did God’s work. 

RIP Roger Dean Lewis, June 25, 1933-April 14, 2015