Palliare

Hard Edges and the Holy at the Edge of Life

Marci Pounders, Arthur Howard Orr

• Publisher: Resource Publications
• Year: 2022
• Print ISBN: 9781666735048, 9781666791662
• eBook ISBN: 9781666791679

This is the stuff they don't teach you in seminary. Here are raw, real-life situations pastoral caregivers may face, especially in working with people facing terminal or life-limiting illnesses. Nearing the end of one's life often results in an existential crisis of faith. Dr. Pounders helps us to understand that death is not a medical problem to be fixed, but a spiritual journey to be resolved. Palliare can be a useful guide for seminarians, chaplains, students of pastoral care, and seasoned pastors as they care for patients and parishioners alike.

1

Is That Lipstick on Your Eyebrows?

Dementia is such a terrible disease. It comes in many forms; Alzheimer’s Disease, vascular dementia, stroke-related, drug-related, and way too many others. Whatever the cause, the result is always the same. The gradual loss of memory and physical ability leads to an inability to care for oneself, dependence on caregivers for all activities of daily living, a loss of contact with reality (this may include hallucinations, paranoia, and anxiety), reduction of appetite and desire to eat, and eventual death. Millions of dementia patients in the United States are in hospitals, care facilities and group homes because their families can no longer deal with their constant needs twenty-four hours a day.

There was one group home that housed four of our company’s hospice patients. One was a lady with a beautiful smile. She no longer recognized anything. Her husband spent hours with her each day, waiting, hoping, praying to catch a glimpse of any cognitive light in her eyes. He would talk to her soothingly and spoon feed her a liquified lunch and she would respond with some unintelligible garble. But she smiled when he was around, and that was what he lived for. Another patient was an elderly man who was always watching classic television westerns with a bottle of Old Crow on his bedside table. He didn’t talk much but he liked my company. We would watch the westerns together and I’d make him laugh by telling him that one day, we were going to have a major party with that bottle of whiskey. And one other patient was a very dignified old gentleman who was usually studying the daily newspaper upside down.

Then there was Mrs. D. Mrs. D was a tiny little old woman, shriveled up to almost nothing. But even with dementia, she was a force to be reckoned with. She kept her caregivers in her group home jumping. If she wanted something, she hollered. And whatever she wanted, she wanted it right then. You could hear her all over the facility. “Help! I need to get up!” “Where are my shoes?” Or more likely, “I want cookies!” She loved cookies. Cookies and sweet tea. That was all she would eat. Her patient aides would take care of her, and Mrs. D would be content until her next random urgent need. I felt for Mrs. D’s poor roommate. But since I never, ever saw the roommate awake, I guess it didn’t bother her too much.

Mrs. D called everyone on our hospice care team, “Hope.” That was the name of our hospice service, and it was on our name badges, so we were all “Hope.” “I like you, Hope,” Mrs. D would say with a big toothless smile. “I like you too, Mrs. D,” I’d reply. If the company nurse or social worker were visiting with me, she’d grab at their badges, stare at them and smile, “I like you, Hope.” We never got tired of it. Mrs. D was a faithful Baptist and loved her Bible. She could no longer read it, but a well-worn copy was on her bedside table. She would parrot the same thing at every visit. “I’m Baptist and I love my Lord Jesus Christ.” I’d read the Bible and we’d talk about Jesus, and she’d ask me about my family. “Hope, are you married?” I’d tell her about my husband and two children. Two minutes later she’d ask, “Hope, are you married?” She couldn’t remember what she ate for breakfast most days, but she could remember, “I’m Baptist and I love my Lord Jesus Christ.” And if that’s all one can remember I suppose it’s not a bad thing.

Mrs. D never failed to notice what I was wearing. “I like that dress.” “I like your hair.” “I like your eye shadow.” One day, I happened to be wearing bright red lipstick (female chaplains need a pick me up occasionally). “I like that lipstick, Hope. I like that color red. Give me that.” I had a tube in my purse, and I took it out. I was happy to show it to her and put a little on her lips. No way was I taking it back after it had touched her lips, so I screwed the cap back on and I let her hold it. She was so happy and excited. Again and again, she had to look at herself in her mirror. Then she had me wheel her out into the main corridor, waving that little gold tube so she could show herself off to everyone. The nurses made a big fuss over her. “Oh, Mrs. D! You are so gorgeous!” I checked with them that it was ok if I left the lipstick with her. “Of course,” they said. She couldn’t do much with it, as she didn’t have the dexterity in her fingers to open the tube, and it certainly made her happy, so, sure. I left Mrs. D beaming in the dining room, gumming her cookies, and happily looking at the rosy lip marks on her frosty glass of sweet tea.

The next time I popped in to see Mrs. D, she was sitting in her room in her wheelchair with her back to the door. She was admiring herself in the mirror. Unfortunately, we had all misjudged both her physical abilities and her strong will. She had screwed open the cap of that lipstick with her gnarled, bony fingers and painted her eyebrows bright red. Not only that, but she had also painted the lips and eyebrows of her comatose roommate in the next bed. They both looked like nightmarish elderly clowns straight out of a Stephen King novel. Not stopping there, she had drawn horrifying red streaks on her dresser, tray table and mirror. If her aide came in right now, she would faint, thinking Mrs. D was bleeding to death. All I could think was, Holy Sweet Mother of God! I was going to get fired, blacklisted (red-listed in this case) from seeing any patients ever again, and all over a nine-dollar tube of Revlon!

“Mrs. D!” I blurted out. “Is that lipstick on your eyebrows?!” She gave me a naughty sideways glance. “Yeah! Ain’t I a dish?” I sat down on the bed and laughed until I cried. Mrs. D laughed with me without understanding why. Then I found some wet wipes and cleaned up the room and the poor painted roommate before it all could be discovered, disposing of that unfortunate lipstick so no further such incidents could occur. As I gently wiped Mrs. D’s face, she smiled. “I look so nice. Don’t I look nice? I want some cookies. Are you married, Hope?” No one ever discovered what happened, Mrs. D’s roommate never stirred, and I never, ever wore lipstick to that group home ever again.

2

A Midwife to the Dying

It takes a great deal of energy to die. Most people do not know this. They think death will look like what they have seen on television, a deathbed profession, a desperate last gasp, a sudden head-dropping-on-the-pillow, arm-dropping-off-the-bed type of end. I find this silly, because even in hospital emergency rooms, I have not found death to be like this. Even in traumatic circumstances, the end when it does come, is rarely so dramatic. One lives until one does not. The heart gradually stops, the ragged breath goes. That is the way of all the earth. I was privileged to travel this last journey with a hospice patient I’ll call “Mami.” Mami was an elderly Latina woman who had breast and colon cancer. She also suffered from chronic diabetes and kidney failure. This time, she had not been able to bounce back, and she was failing. She was admitted to our in-patient hospice unit to be kept comfortable until the end.

When I first visited Mami, she was semi-lucid, but very agitated. This is common in patients with less than a week to live. Her neurological transmitters were beginning to shut down. She kept trying to get out of bed until the pain medication sedated her. When she did open her eyes, there was a wide, blank, almost bewildered stare into nothingness. When she closed her eyes again, she smiled and appeared to be carrying a conversation with someone. Her daughter J whispered, “She’s talking with my dad. He died two years ago. She says that he is putting on his tuxedo to meet her. He’s going to take her to a party, but he’s being slow about it, and she’s aggravated he’s late.” Her daughter managed a tired smile. “He was always late, wasn’t he, Mami?” Mami was seeing things we could not see. “How wonderful,” I said. “She’s going to be with him soon and he’s there anticipating her arrival.” “Yes,” replied J. “That makes me happy, to know they’ll soon be together.”

I have always been fascinated by deathbed hallucinations. Are they real? To the dying person, they are very real. My own mother was convinced there were toucans roosting in the ceiling of her intensive care room. One of my patients years ago was terrified of the wolves she believed were lurking outside her hospital room door. (My pastoral care duty on that visit was to shoo the wolves away and stand guard). Another patient saw ghouls that he described as looking like Gollum, from the Lord of the Rings movies. Another saw angels. One saw a beautiful woman floating at the foot of her bed. And yet another was convinced that the lovely painting of red poppies in his hospital room was a picture of Satan smoking pot. I could not convince him otherwise.

The brain does strange things when one is dying. Of course, medications such as morphine, propofol, methadone and fentanyl can cause hallucinations. And urinary tract infections and a lack of oxygen and blood to the brain are also to blame. But I have been with too many dying people seeing angels, heaven, deceased loved ones and even Jesus to think that God in his infinite mercy does not reach out in some mysterious way to comfort his children on their way home to him. I wished so much that I could glimpse the mystery that my dying patient was seeing!

J was so very tired. She was her mother’s only child, and there was no one else to relieve her long days at the hospital. She insisted on staying around the clock, because Mami would become anxious if J was not within her line of sight. One day, J asked me, “I don’t know what to expect. I’ve never done this before. My dad died of a heart attack, and we didn’t have to camp out at the hospital all day and night like this,” she said. “What will it, you know, death, look like?”

I thought of a classic episode of the old television show, The Twilight Zone, where the Angel of Death (a very young and ridiculously handsome Robert Redford) comes gently to a frightened elderly woman. I didn’t tell J that I sincerely hope on the day I pass from this earth that my death angel will look like a young, tanned, ridiculously handsome George Clooney. “J, every person’s death is unique to them.” I talked gently about the usual signs and symptoms associated with one’s last days. There would be a gradual decline from agitation to somnolence, more hallucinations, loss of appetite, slowed, labored breathing, a shutting down of urine output, and finally the cessation of heartbeat and breath. “Yes, but does it hurt? Will she be in pain? Will she get hungry or thirsty? Should I feed her? What should I do?”

The most distressing thing to most folks is when their loved ones stop eating and drinking. We associate food with life, with love, with holidays and the celebration of happy times. We think we are not doing enough to keep our dear one alive, or that they will “starve to death” without food. But when a person is dying, his or her body uses up every bit of energy it has just trying to keep breathing and to keep the heart pumping. Digestion takes away from this, and it diverts energy away from the brain. Palliative physicians advocate for “comfort feeding” such as popsicles, pudding, ice cream, milkshakes, or whatever the patient truly might want while they are still able to enjoy it. I once got take-out Kentucky Fried Chicken for a patient with the physician’s permission. She gummed away at it happily with the one tooth left in her mouth. But if a person is actively dying, food can cause more discomfort when it is forced. “You just need to be here,” I reassured J. “She’s being kept comfortable with pain medication. Death shouldn’t hurt at all. Just like a deep sleep and a transition to the eternal. If she wants something, of course by all means give it to her. But don’t force her. Her body knows exactly what it needs right now.” J was somewhat less anxious about what to expect.

The next day, Mami was remarkably awake and aware of her surroundings. She knew she was in the hospital. She didn’t know who I was at first, but after about ten minutes, she understood that I was the chaplain, and I was okay to be there. I think what made me more “okay” was the big sparkly necklace I was wearing. Mami loved jewelry. She kept looking at me saying, “That’s so pretty!” She would look at me, then back at her daughter. She would smile at J. Then she’d look back at me. “Oh, that is so pretty!” like she’d never seen me or my necklace before. I took the necklace off and let her hold it. When she didn’t want to give it back, J was horrified. “Oh, Mami! No! That’s the chaplain’s jewelry!” Mami frowned and clutched it tighter. “No, it’s not! It’s mine!” When J started to take the necklace back, I quietly gestured no. Arguing with patients who are confused or have dementia never works. It only makes them more upset. It was ok, I whispered to J. I could get it later. Then I told Mami how much we had in common, to like pretty things. She nodded and smiled contentedly.

Dying patients often rally and have one last big burst of energy before slipping into their final coma. The following day, Mami was very talkative. She held court with family and friends in the morning, oriented times ten. Then in the afternoon, she crumped (medical slang for failing fast). J put in an urgent call for me. Mami snorted that I was not the chaplain; I was someone else. Soon I had morphed into a friend from church and then a cousin who had been dead for years. J gently corrected her again and again. Finally, Mami looked at me and said, “Oh yes, she’s the pastor, isn’t she?” And we all smiled. Suddenly out of nowhere, Mami farted. And I don’t mean a cute little fart. I mean an Enormous Ghastly From The Depths of Hell Fart. The aroma was powerful enough to peel the paint off the walls. J and I giggled, even as our eyes were watering. Mami’s eyes ...

Table of contents

• Title Page
• Introduction
• Chapter 1: Is That Lipstick on Your Eyebrows?
• Chapter 2: A Midwife to the Dying
• Chapter 3: Piglet
• Chapter 4: Starving for a Miracle
• Chapter 5: The Tenth Leper
• Chapter 6: From Hell to Eternity
• Chapter 7: The Illusion of Control
• Chapter 8: I’ll Hold You Forever
• Chapter 9: Blindsided
• Chapter 10: A Pietà in the NICU
• Chapter 11: Broken Heart Syndrome
• Chapter 12: Jagged Little Secrets
• Chapter 13: Sex and the Senior
• Chapter 14: Communion, Disinfected
• Chapter 15: All I Want is World Peace and a Pedicure
• Glossary
• Bibliography