A novel by Scott Newton
“I have a cynical view of the world. I see doctors and nurses as soldiers, and everyone else as mere civilians.”
Dr. Wohlfahrt 2003
I wasn’t a talented, natural athlete, but I liked sports. I trained hard and learned the fundamentals of many sports. I’m competitive.
Leanne, my girlfriend, was a college basketball player. We would play one on one on the playground beside her apartment building. She always won, but I would tease her, saying I could win a free-throw contest against her at any time. She scoffed at this and challenged me, but I told her I wouldn’t compete in a free-throw contest until she made the appropriate bet.
She offered a coupon for sex versus a back rub from me. “I won’t make that bet,” I said. “When I win, I won’t be able to tell my friends. Sex is a private thing. I’m not going to tell people you gave me a coupon for sex.” She laughed; it was good natured.
Then the conversation changed to money. She’d beat me in a game of one on one, and I’d challenge her to a free-throw contest. She’d name a figure, $5, $10, maybe an Andrew Jackson.
“What’s that?”
“A $20.”
I pretended to consider each option. “Hmm, what could I buy for $20?” I’d turn down the bet. “I don’t want to take money off you. I want something that will be a commitment, like the loser has to fix drinks and dinner and clean up the kitchen after,” I said.
She laughed and said, “What are you going to fix me when you lose, scrambled eggs or a bacon and tomato sandwich?”
This made me laugh because there was truth in it. I was merely waiting her out. In the meantime, when I had a few minutes of free time, I’d practice free throws. I’m a hospice nurse and visit patients in the home. I may see six patients and drive a hundred miles in a day. I hate driving. But, when I find myself with a few minutes, I’ll stop by some playground and shoot free throws. Ten if I’m in a hurry, a hundred if I’m not. Usually I was in a hurry.
Free throws are a simple matter of form, good technique. Square up in front of the basket, rise to your toes, jack the ball up with your arm, extend the wrist, point the fingers down like throwing a wrapper in a waste-paper basket. Never, ever jiggle any part of the body. Sounds simple, but it’s not.
One must be careful goading a person into making a bet. Push too hard and the person will back out or the terms will be unreasonable. Also, if one expects to collect, it’s better to let the person who is being hustled partly set the stakes. Leanne finally found the terms. If she lost, she’d fix dinner. If I lost, I’d take her out to a nice restaurant. When she suggested this, I said yes. I knew she was serious because she made me shake hands.
I met Leanne when she was working at a restaurant, Rocky’s. She was popular and energetic, and earned good tips. She has a college degree in psychology, so she’s disappointed in the job. I don’t know what job she thought she was going to get with a degree in psychology, but I never teased her about it. In addition to the waitressing job, she was going to coach the local high school girls basketball team in the winter, so that was a positive in her eyes.
I flipped a coin to see who would go first. I looked at her. She had shapely legs and toned, tan arms, which were accented by a sleeveless top designed by some athletic apparel company in the color of white. It was summer and she had some color in her face. She looked great. Her hair was pulled back in a ponytail. She had straight, light-brown hair. She called heads, won the coin toss, and made seven of 10 free throws. Most players consider a 70 percent free-throw average to be pretty good.
I was wearing shorts and a t-shirt. It was June, sunny and starting to warm up a little in Manitou Springs, Colorado. The flowers were out in the park. The day Leanne decided to take me up on the challenge of a free-throw competition, we were both in a good mood, at least partially because of the good weather.
I stepped to the line and made six free throws. Each time Leanne rebounded and passed me back the ball, she looked a little more unhappy. “Have you been practicing?” she said finally.
I made a seventh free throw, tying it up. On the eighth shot, I bounced the basketball in front of me, drop kicked it, and the ball hit the backboard. I laughed out loud.
“What are you doing?” she said.
On the ninth shot, I turned my back to the basket, threw the ball with both hands over my head and hit the rim. “Almost,” I said.
“You’re a jerk,” she answered.
I looked at that long, lean, fast body. She was not only a college basketball player, she had been one of the stars. She was pretty, but now she was scowling at me. I stepped to the line, aligned my body and using good form, hit my next shot. I won eight to seven. Leanne collected the rebound and threw the basketball at me as if she were pitching a baseball. It came at me hard, and I knocked it down with the heel of my hand. She walked off the court, across the street and into the apartment. I shot baskets about a half an hour before I went in, hoping she had cooled off. The bet wasn’t mentioned again for at least a week, and it was never paid off.
Chapter two
There are five to six liters (a liter is nearly equal to a quart) of blood in the human body, depending upon the size of a person. I learned this in nursing school. When I explained the situation at the home of Melvin Brick, I told Dr. Wohlfahrt the patient was sitting with his penis wired in place in front of a five-gallon bucket of blood. I was with the nurses, a pharmacist and the doctor in a team meeting and everyone laughed. I did too, knowing I had not described the situation correctly.
“The body doesn’t have five gallons of blood,” Dr. Wohlfahrt said. The doctor was an oncologist and a good teacher, and also fun to be around. I’d set him up with an obvious punch line. He was a tall, slender German with a good deal of thick, black hair, which was never quite combed.
I was amazed with his hair because I knew he must be 60 and it was black with just a trace of grey at the temples.
“Let me try again,” I said. “Melvin Brick has prostate cancer and is 90 years of age. His wife is the caregiver. He has trouble stopping and starting his urine stream, so he has organized the den for his use. He sits in an old easy chair, which is on a raised, wooden platform so he sits up high, and has a five-gallon bucket of blood and urine at his feet.
“He has wrapped duct tape around his thighs, and each wrap stabilizes a piece of bailing wire. They meet in the middle and each of the wire ends is made into a loop. Together, the wire loops aim his penis at the bucket. The penis is inserted loosely, and there are no sharp edges on the wire. He has soldered the ends.
“He has a TV in front of him, and a bottle of Vicodin and glass of water on a stand by his chair as he has quite a bit of pain. He will not rate the pain, and no one has kept track of how many Vicodin he takes a day. When his wife comes in the room, he throws a sheet over his private area.”
The nurses were still laughing about the fact I said there was a five-gallon bucket of blood in the home. Plus no one had ever seen this setup before.
“What do you want?” Dr. Wohlfahrt said.
“I was going to order a hospital bed and place a Foley catheter. His wife is keeping track of his pain medication and when we learn what he needs, we can switch it to time-release morphine if you want. I guess I was just concerned seeing that big, five-gallon bucket half full, thinking maybe his prostate cancer is more of a problem than normal.”
“He and his wife will do better now that they have some help,” the doctor said. The catheter would eliminate the need for a bucket to pee in. He could move more easily from a bed to a chair and back. The discussion moved on to other patients. I was new to hospice work. After high school I had worked construction, skied and traveled for six years before going to nursing school. It took me six years to graduate from nursing school because I had jobs when going to school. I was 31 when I went to work for the Colorado and Manitou Springs Mountain Hospice. Because nursing pays well, and I had been broke most of the time I was a student, I thought I was immediately prosperous.
I was working full time as a nurse, and within a year I was building a house on a lot I had purchased. I drove so many miles, I had to purchase a used Toyota Camry to absorb all the miles.
Also within a year, I had two girlfriends. It was not something I planned and I know some people will find it irregular. My life was an interesting juxtaposition. I was helping people who were very sick, and I was regularly enjoying sex, which is a celebration of life. The two women didn’t know of one another.
We all die. Sex serves a vital function. I wondered if I was going to die at a young age as I seemed to be experiencing all of life at a high level, and had been doing it for some time. I felt very fortunate. For me, skiing had been an intense life experience. There is nothing that beats flying through the snow at high speeds to make one feel alive. At school and work, life was now intense in another way. I felt I needed to take my studies and then my job seriously because it was important to do good work for people who need medical help.
My father was mad at me when I left high school. I left home in Nebraska, started skiing, and working construction in the off season. After two seasons, I was a good enough skier to work on the ski patrol. Then, two years later, I was a shift leader on the ski patrol. We worked long hours, and it could be a hard job. It paid OK, I have to say, and in off seasons my buddy Mike and I worked long hours on construction jobs. We saved money, then traveled. We went to Japan, Australia, Nepal and Thailand, then England, France, Germany and Spain, followed by Belize, Panama, Hawaii and Alaska.
I began my hospice job in January 2000 and met Leanne a few months after I moved to Manitou Springs. It was at the aforementioned Rocky’s, which I consider a family diner. She was 22 and had just graduated from college. She’s 6-foot and athletic. I’m five-nine and was a less-than-average defensive back on a better-than-average high school football team. I thought Leanna a step up for me and a step down for her, but I wasn’t going to tell her that. Just as I felt prosperous, I felt lucky at love.
I met Shawna in the fall, a 35-year-old endocrinologist who was on the rebound from dating another doctor and seemed to like my sense of humor. I admit when I met her it was on a night I seemed to be on a roll. I was happy with my pay as a nurse, although of course I didn’t make doctor money.
I had just found a lot to purchase to build a house. My friend Mike was in town for a few days. He had lined up a job as assistant director for a ski patrol.
We were at a restaurant called Park Place, a nice place, seated near two women and for a reason I don’t know, except they were both pretty and smiled, I told the waiter to charge their wine to me. “Too soon for a move like that,” Mike said. He could be negative. I was always the optimistic one.
“I was feeling bold,” I said. “I feel good, seeing you. I have a new job and the money’s rolling in and you are going to be an assistant ski director. So I’m celebrating because who knows when I’ll see you again, but I’m happy for how things are working out.” I had been at the hospice job nine months, and it still seemed like a new job to me.
“Nursing school did a good job of breaking up the team of Thomas and Mike,” Mike said. “But it’s a good career choice and you seem to be enjoying it. I miss the days when we used to save our money like misers, then plan a three-week overseas trip.”
“We had some fun on those trips,” I said, nodding in agreement. We considered ourselves good travelers. We’d found a way out of many jams.
The waiter told the two women about us buying the wine and they raised their glasses to toast us. Mike and I had beer. We toasted back. One of the women was busty and strong, pretty with a nice smile. That would be Shawna. The other was slender and looked like a movie star. She was Shawna’s friend, an accountant from Denver. Shawna had grown up with her.
After both parties had eaten, Shawna and her friend moved to our table and we talked for a while, having coffee and dessert. Mike said he was in town only for another night. He was dreading going to Pueblo for a construction job. It was hot in Pueblo in September, and Mike considered it a boring town. In the winter, he would be assistant director of the ski patrol at Blue Lake, located on what is called the western slope of Colorado, a long way from the twin cities of Colorado and Manitou Springs. Shawna’s friend had a boyfriend in Denver. We learned Shawna was a doctor.
“A doctor, a nurse, an accountant and a ski bum. Looks like I’m not going to make it with this crowd,” Mike said.
“You’re probably the one doing what we’d all like to do,” Shawna’s friend said. That theme was interesting and we talked about pursuing careers and families, and trying to remain true to ourselves as well hold a job. I won’t say we came to any conclusions, but we did find out Shawna had moved into a new condo with a three-par golf course in front and Mike recommended I help her with the game. “I laugh at this idea because I’m an average golfer on my best day,” I said. But, as with other sports, I had gone to the trouble to learn the fundamentals. Shawna didn’t know anything about golf; it may have been the sole reason I got a date.
We exchanged business cards, writing our personal numbers on them. Shawna smiled nicely as she handed me her business card, so I had to assume I had a chance despite being a lowly nurse.
Chapter 3
I was told by my anatomy teacher to name my heart after a horse. You want a strong, durable heart, not the kind Walter Stoep had. Three trips to the emergency room, two bypass surgeries, a medicine cabinet that included nitro, morphine, furosemide, an ACE inhibitor – I can’t remember which one – and of course a life living connected by an oxygen tube to an oxygen concentrator.
All of this propped him up and he was mostly OK. His life had been reduced to three rooms by the time he came to the Colorado Springs hospice. He’d been in a retirement home once. I knew the place, had worked with patients there, and it was nice, but to him it was “that institution.”
And so, with his son’s help, Walter Stoep moved back to, and stayed at, his little house. He watched out the window as the neighbors had new roofs put on, new coats of paint applied, insulation and weather proofing installed around the doors and windows. Walter Stoep told me one day he hadn’t done any maintenance work on his house for 20 years. He was 87 and willing to leave the work to someone else.
Walter knew all about his bad ticker. He knew it slowed him down physically and played a role in his awful constipation. He knew exactly how many nitros and morphines it took to walk down the steps, check the mail and walk back up the steps. He saw his own mother die at the age of 50 in an oxygen tent, no nitro or morphine to ease the pain in her chest. I’ll tell you, it used to be hard to live in this world.
In the end, I took Walt’s mail in. Walt’s son and wife visited every Saturday, stocking shelves with groceries and paying the week’s bills. Our hospice bath aid visited twice a week, making sure he was clean and she took in the mail as well. Our housekeeper visited once a week washing dishes, running the vacuum sweeper and taking in the mail. She did the clothes washing, too, a huge benefit because the basement stairs were even more onerous than walking up the front steps. A volunteer visited on Sundays, so Walt saw someone every day of the week. This helped him stay in the house.
Walt didn’t receive a good flow of oxygen to the brain, so he forgot when he’d taken medications or when he’d told his stories. I set up a medication box for him, refilled it twice a week, and then I could check to make sure he was taking his pills. If he was having a bad day, it was often because he had forgotten to take his pills. About the stories, well, I listened to some of them several times, but they were entertaining.
There was the good son, Rodger, with a wife and two adult children, and the bad son, with four divorces, two bankruptcies and ongoing money problems due to gambling and unsuccessful business start-ups. There was the wife of 40 years who preceded Walter Stoep in death. He would have benefitted from her company in the six months I knew him.
Years ago, there was a hardscrabble job working in the fields of Texas, maybe picking cotton, and later, a job selling farm equipment for a company that didn’t pay well although padding the expense account was OK, acceptable. “They must’ve thought I ate steak at every meal,” he said. “Everyone did it.” All people are hypocrites when it comes to money.
Walt also served stateside as a clerk in the Army during World War II, and disliked the military as much as he disliked the retirement home, “that institution,” where he’d spent six months. In Walt’s world, “institution” was an insult, a cuss word, and the retirement home and the military were primary offenders.
I saw Walt twice a week and liked him, although I’ve done as much for patients I didn’t care for. Officially, a person must have a caregiver in the home for the Colorado Springs hospice to accept him as a patient, but what are you going to do? Force an independent old guy like Walt into a nursing home? He would’ve refused our service and stayed home miserable. So we signed him up, but the spineless social worker Mattie Green always threatened when things got bad she was going to call his bluff. Yeah, right.
I knew Walter Stoep. I knew just how many senna tablets to give him to keep his bowels moving. I knew to put three nitro tablets and two morphine tablets in a little dish by his chair. When he’d get to hurting, he couldn’t remember to get up out of his chair to get his medications, but if they were next to the chair, he’d take them. The pain was angina.
One spring day I was so loaded down with work I skipped lunch. It was 4 p.m. and I was getting ready to go home when I was paged by the office. Walt’d called, asked if I could stop by. I didn’t call him on my cell phone, just drove straight to his house. It’d happened before. You’d give him his pills, turn up the oxygen a little, wait a half an hour and he’d be OK, the pain in his chest easing up.
If it was constipation, there was another plan. It always interested me the nurses who made bowel care complicated. First one uses Senokot or MiraLax according to the directions. If that doesn’t work, use a silver bullet, which is a bisacodyl suppository that came in a foil-like wrapper in those days. If that doesn’t work, give a soap suds enema, slow and gentle. Walt had senna regularly, but if he remained constipated a silver bullet always seemed to work.
This time was different, though. Since he had started using the medication box he did pretty well with his pills, and on this day he had taken his pills. He had also taken the pills by his chair. He had had a bowel movement. I gave him another morphine and another nitro and turned his oxygen up to 3 liters per minute. After 15 minutes he was still in a lot of pain, so I called his doctor.
It was after 5 and I got the on-call doctor and told him what was going on. He was a favorite of mine, and told me I was doing the right thing. Repeat the nitro and morphine until he is comfortable, he said. It was the only thing to do and he would sign an order covering me.
Following his instructions, I also gave Walt a 30-milligram time-release morphine and isosorbide, a long-acting nitro. Nitro reduces cardiac oxygen demand, and morphine eases heart load in addition to killing pain and easing air hunger. I listened to the heart and it was beating like crazy, 140 times a minute. The oxygen saturation rate, which measures how well the heart is moving oxygen through the body, was 96 percent.
The heart rate went down to 90, and the oxygen saturation rate dropped to 80 percent. Not good. The heart would speed up, and the oxygen saturation rate would rise. He went up and down. I’m not a cardiac nurse, but I did have nursing experience and I’d never seen this before. There was no real relief from the chest pain.
I called the evening on-call nurse, told her what was happening. I called Walt’s son Rodger at work, but he’d left. I called Rodger’s home number and left a message. The two numbers were the only ones I had for Rodger. The patient had advanced directives that said not to call 911.
After an hour and a half of giving the medications, the nitro and the morphine, the patient said he was feeling some relief. He wanted to lie on his bed. Good idea, I thought. I’d called Rodger a few times, but figured he’d know by now I was looking for him. Walter said he would rest his eyes. I went into the living room to do some paper work. It hit me that I hadn’t eaten all day and, despite the crisis, I began to think about food. I called the on-call nurse again, and she would’ve taken over for me, but we were both uncomfortable with that.
I’d given the patient a truckload of morphine and I wanted to be able to explain everything we’d done to his son. In person. Face to face. I wanted to explain that despite the nitro his heart kept hurting and pounding. That despite the morphine the pain continued, 8 on a 1-10 scale. I wanted Rodger to know I’d talked to the doctor. The on-call nurse, though she was an experienced nurse, was uncomfortable with the amount of nitro and morphine the patient was taking. Well, so was I.
I walked into the bedroom to check on the patient and he wasn’t on the bed. I walked into the bathroom and there he was, dead on the toilet. I’d heard of this, but this was the first time I’d seen it. “Walt,” I said, “are you with me here?” I was holding his face. I knew he wasn’t. He was pale white; he had the look. He was leaning forward, elbows on his thighs. Drool coming out of his mouth. No apical pulse. No carotid pulse. Pupils not reactive to light. Walt was clinically, officially dead.
I learned a move in high school wrestling called the fireman’s carry. I took Walt’s limp arm, put it over my shoulder, backed into him, lifted with my legs not the back, carried him into the bedroom and dropped him on the bed. I pulled up his pants, straightened him out, put his head on a pillow. I didn’t worry about calling his son again; he had a half dozen messages on his answering machine already.
I went into the living room and looked at a newspaper. I was starving. Would it be OK to eat out of Walt’s refrigerator? Walt would’ve said it was OK. The food was good. But still, the man was dead and it wouldn’t feel right. Maybe I could order a pizza. What if the pizza delivery person and Rodger showed up at the same time? That might look like disrespect.
I thought about all the missing morphine. Rodger could say I’d killed his father bv giving too much. Or, he could say I’d stolen it. That’s it, I decided. I’m not managing any more cases where there isn’t a caregiver in the home. A nurse needs a witness to protect his license if nothing else.
Rodger and his wife showed up very soon after I’d put Walter in bed. Rodger had gone to the dentist, had left work moments before I called. Then, he and his wife went out to eat. She left the house minutes before I called. In those days, few people had cell phones. The hospice paid for mine and it in no way resembled a modern smart phone. I had a cell phone and a pager, a ridiculous combination.
I told Rodger the story of his father’s death, leaving out the detail of him dying on the toilet. Rodger was grateful someone was with him. He appreciated the doctor had said to keep him comfortable. He was sad but also his father had suffered for some time. He said his father looked comfortable on the bed and this made him feel good.
I once asked Shawna if I should have told the son and his wife about the patient dying on the toilet. End of life, the delivery of bad medical news, everyone had different opinions on what the exact wording of the bad news should be. Dr. Wohlfahrt, the oncologist, always talked in terms of statistics. The patient has a 5 percent chance of living five years. That meant a patient had a 95 percent chance of dying. The patient could understand or he could grab onto the 5 percent life buoy. I was a good student in math and liked the statistical way of stating something. I thought it was good information, but other people I worked with expressed anger for anyone talking in statistics about such a serious subject. Some people want things sugar coated. In the 1960s, a doctor wouldn’t tell a patient he had cancer. There is still a question as to how much information people want. It differs considerably.
“Let them think he died comfortably in bed,” she said. Shawna had experience delivering bad news and I trusted her opinion.
Chapter 4
I can’t tell you how many people I’ve seen die. I quit counting at 15. The most memorable was a man I visited at 2 a.m. when I was on-call. He was a big, retired policeman and his wife and daughter were with me. His lungs had started rattling with fluid during the night and they requested a visit. I said the patient was actively dying but they turned the conversation to his life so I didn’t elaborate. Just listened. Then he stopped breathing. I didn’t say anything and began to check pulses.
He sat up in bed and bellowed like an elk. Throaty. Aar-ooh. Low range to high. I admit I jumped and his wife laughed. He fell back in bed.
“Have you seen that before,” she said.
“No,” I admitted. “That’s a first.”
The first hospice patient I saw dead was a giant of a man, 6-foot, 6 inches. I was in the home when two men came from the funeral home. The man’s wife was facing me at a table, her back to the patient, while I watched the two men try to fit the man into a body bag.
They kept tugging on the body bag to get all the space possible, and then began trying to adjust the man, tilting his neck up a little and pulling his toes back. The man was dead, of course, and they were trying to be discreet, but inside I couldn’t help but laugh at the absurdity of it. Finally, the body bag bowed, they moved him onto a cart and wheeled him out. The wife was oblivious to the banana-shaped body bag. Perhaps she noticed and was immune to the problems of a man so tall.
I have never witnessed a death where the dying said anything profound in the minutes before dying. Deathbed scenes are for the movies, not real life. I’ll let you in on some secrets. All people die from a lack of oxygen. You can list a thousand things on the death certificate, but it’s always a lack of oxygen. Life is in the living of it, not in the fact you use oxygen. I’ve seen lots of people who stopped living 40 years before they signed onto hospice. They fight with their families, smoke and watch television, not once doing anything interesting or fun, not making one donation to charity, helping one neighbor, writing one symphony or building one empire.
I can assure you, Leanne was full of life. There were times when she was wearing me out in bed. Of course, this only made me happy.
I met her father at one of the team’s basketball games in November. He told me I’d never meet a tougher high school girl in my life. I said I didn’t doubt it.
“She was playing soccer on her high school team,” he said. “The team is playing in the rain, so it’s cold and wet, but Leanne is playing at full speed. That’s how she always played. She gets tripped up, slides in the mud and gets mud in her eye. She jumps up, cups her hand, dishes some water from a puddle and washes the mud out of her eye. She continues playing.”
I laughed and could tell he was proud of the story. “Washed mud out of her eye with cold water from a puddle and kept playing,” he repeated. I liked her mother and father. He seemed to talk mostly about sports, which I can manage for a while. His wife was able to make conversation and we seemed to get along.
He was a service manager at a car dealership. “He was never much with the public, but he could fix things the other men couldn’t,” his wife said. I figured sports and hunting would be his only outside interests.
He may have been dubious about his daughter dating a male nurse. He didn’t seem to warm much to me. “I heard they found a cure for cancer, but don’t tell anyone because the doctors make so much money off it,” he said.
“I heard they had a perpetual motion machine, but they don’t tell anyone because it would hurt service managers at car dealerships,” I said.
For the first time, I got the smallest trace of a smile. “Yeah, I never put much stock in the idea myself,” he said. I could see where Leanne didn’t get her sense of humor.
Leanne and I were getting alone fine, but it was a bit of a difficult time for her. I knew Leanne could play basketball, but I wasn’t sure she could coach it. In November, at the start of the season, the parents complained Leanne made the girls work too hard. They came home from practice exhausted.
Then in December, one of her best players quit because it wasn’t fun, and all the parents talked about that and complained to the school principal.
Leanne got talked to a couple of times by the principal of the school. I listened to her. “A good basketball team has to be in shape. They must be able to run,” she said.
I nodded but I was not going to offer any advice. I was trying to be playful with the free-throw competition, but we never joked about it. I actually think she respected me a little for it, but I wasn’t trying to earn respect. I was trying to give us something to joke about, but she never took the teasing so I dropped it. I guess it wasn’t funny.
But now the word “fun” was at the crux of the matter at the school. “Those girls want to have fun without working for it,” she said. “When you win, that’s fun. But you have to earn it. You have to work hard.”
I nodded. We were sitting on her couch and I hugged her. She started crying. “The parents told the principal I’m not fun,” she said. She was working in a restaurant. With the tips she received, she did OK financially, but she had a psychology degree and not even a remotely related job. Now coaching basketball wasn’t working out. The team lost the game I watched with her parents.
“It’s a long season,” I said. “Good coaching will show,” I said. “You’ll see.” I wasn’t sure, though. Maybe I was giving her false hope. I was always worrying about giving people false hope in those days. One can’t give hospice patients false hope.
Chapter 5
A hospital is run something like the military with doctors occupying the top ranks. A nurse is a sergeant. The hospital is a good place to be if you are critically ill. In the home the patient sets the rules, which is where the rubber meets the road.
The patients take what the doctor gives them, often good advice and prescriptions, and make it work. Take, for example, the pills. The pharmaceutical companies can call them whatever they want, and provide parameters for use, but let me tell you people are going to name them and use them as they want.
Hytrin, which works to help the bladder relax – it helps old men pee – is the Mexican jumping bean to Mr. Nelly and indeed it looks like it’s going to jump right off the table. I had a patient who was freaked out by the florescent pink of propoxyphene napsylate, a mild pain pill. I had a patient who used a rub-on cream he called “Joe Namath’s medication.” It took a while for me to figure out he was talking about Flex.
To another patient, the tiny 0.5 mg Ativan tablet is “the flea.” To another, “the dot.” Yet another calls it “the LA” for lorazepam, the generic name, and Ativan, the trade name. Our nurses use these names interchangeably thereby confusing some patients.
One patient took Roxanol, liquid morphine, with a little Pepsi. Roxanol, they tell me, has a nasty taste. Others mix it with juice, yogurt, applesauce or water.
A man told me a stool softener, a football-shaped, clear-red capsule, should have one flat side so it doesn’t roll off a table. I agree.
One man called his nausea medication his sea-sick pills. Another called his amitriptyline his nutty pill. Amitriptyline can be prescribed for depression, insomnia and nerve pain, but once he learned mental health patients took it, it was the nutty pill even though in his case it was given for sleep.
An oncologist told me it’s crazy to mix Tylenol with hydrocodone, which is a Vicodin. An opiate-senna combination would be much more practical. Tylenol is a mild pain reliever; so mild it hardly works. Senna is the gold standard of laxatives.
One woman I know got a buzz off Marinol, which is THC, the psychoactive ingredient of marijuana. When she learned the generic name was dronabinol, she laughed. “They gave it a funny name so you’d laugh when you said it. Then you giggle when you take it.” It was a good joke, but cancer nausea is hard to treat and I’d only seen Marinol work this once. Often the best alternative for nausea is to stop eating, which is news the family doesn’t want to hear.
One man who took furosemide, a diuretic, called it his get-up-and-go pill because his reaction to it was so rapid.
A woman called her instant-release morphine pill her “quick hitter.” Another called her Xanax, a sedative, her “shaky pill.” She took it when she got shaky.
I’ll never forget Mrs. Robinson, a lovely, elderly black woman. Her doctor put her on a diuretic and four potassium pills. The potassium is to make up for the loss of electrolytes she will experience from taking the diuretic. If you’ve ever seen these potassium capsules, they’re huge. Horse pills, really.
Mrs. Robinson said to her doctor, “Do I have to take four of these?”
He said, “Can you eat six bananas a day?”
“No,” Mrs. Robinson said.
“Then you have to take four of them.”
We changed it to a solid pill, not the capsule, and she could cut them in half. By cutting them in half, we made it more palatable.
If you work with patients in the home, you never know what you’re going to see. I like that. In the hospital, everyone conforms to the model of treatment. The diabetics don’t eat dessert. Once in the home, every family does health care, and death, differently.
I remember the case of Marsha Halton. She was an ICU nurse who once smoked like crazy. Her husband was caring and attentive. Her son, Mark, was a firefighter. When I arrived in the home to meet them for the first time, the husband and son were wearing surgical scrubs. The patient’s oxygen saturation was 88 percent, which is low, and there were loud gurgles in her lungs. Obviously she was not doing well.
The son took a mask, put the oxygen at 10 liters per minute, and put the mask to her face. There is a limit as to how much oxygen can be absorbed by the body. One can blast oxygen into the lungs, but the tiny alveoli only absorb so much and anyway the volume of the lungs is limited. The woman was groaning. Then he hooked up a nebulizer and gave her a steam treatment, which was albuterol.
I asked why they didn’t give the pain medication. Mark, the son, said she’s more alert if she doesn’t take it. “If she’s alert, we have a better chance of getting her to eat.”
“Yes,” I said, “but she’s groaning.”
“The doctor said if she responds to the radiation, she can have chemotherapy,” said her husband, Richard. “We want to keep her strong.” I thought yes, but the same doctor later put her on hospice.
The patient began to cough. I said, “Well, let’s at least give her hydrocodone cough syrup for the cough.” They reluctantly agreed with this; the cough was bad. This was not the pain control regimen I would have wanted, but it was something. OK for day one. Inside, I’m thinking, “It is not going well here.” I scheduled a visit for the next day.
The pulse oximeter I carry in my nursing bag is about the size of a book of matches. They used to be expensive but in recent years they have come down in price and many people have them. Years ago, the hospice had a pulse oximeter machine in a big console, a solid-state thing that weighed about 40 pounds. The nurses laughed as I dusted it off and carried it out of the supply room and to my pickup. (At the time, it was my only vehicle.)
On my second visit to see Marsha Halton, I took this monster pulse oximeter machine with me. Mark took to it immediately. He hooked the clip on her finger and set the heavy machine with the ICU-like lights at the head of the bed. It may sound funny, and maybe you don’t agree, but I think I became a part of the Marsha Halton care team that day. The husband and son seemed to want that place to look as much like an intensive care unit as possible.
I asked how everyone was sleeping and learned they were not. Marsha was coughing all night. I wrote out a schedule for giving the cough syrup every four hours, plus Xanax at the hour of sleep. They agree do to this. Everyone should sleep at night, they said. It would help her build strength.
I visited again the next day. The scrubs were gone. The patient and the family had slept the night before. The wild look was gone from their eyes. I sat on the couch with Richard Halton and he told me about his life. He sold insurance, liked golf, was proud of his firefighter son and his daughter, who had three children. Then he asked what I thought about his wife.
I said, “I think she’s dying. I think we should try to keep her comfortable.”
Richard started crying, and we sat together on the couch about 20 minutes before he settled down. “The radiation didn’t stop her cancer, did it?”
I asked him to look at it from an objective perspective. “She has a lot of pain, she’s bedridden and she’s not eating. She’s not talking much and has loud gurgles, rales – her lungs are full of fluid. I don’t think she’s strong enough to go through chemotherapy. I doubt her cancer’s been stopped, but that’s not for me to say.”
We got up and walked into the room where Marsha’s bed was. The lights glowed from the pulse oximeter machine, heart rate and percentage of oxygen in big, red numbers. A large bottle of cough syrup sat on the overbed table next to the nebulizer.
Mark, his sister Marlene and Richard were in the room and talked a few minutes. Mark said, “Mom, do you want us to address the pain, keep you comfortable, or do you want to try to build up strength and go in for chemotherapy.”
It was quiet in the room. Everyone leaned forward to hear. Marsha was weak and it showed in her voice. “Keep me comfortable, Mark honey, let me go,” she said.
Mark stepped back. His strong, masculine firefighter face did not change expression. I noticed for the first time, he had a good haircut.
“OK, mom,” he said. It broke my heart to hear it, but I didn’t say anything.
All the medications needed for good comfort care were already in the home. We changed from cough syrup, a 5-milliliter dose of a thick liquid, to a few drops of concentrated liquid morphine. We gave her a small dose of liquid lorazepam round the clock to relax her. Mark quit setting her up. He had been lifting her up in bed and trying to get her to drink protein drinks. This stopped. He stopped putting the oxygen mask on her face; she used a nasal canula instead.
Mark and his sister, Marlene, began to talk about their childhood. Things that Marlene’s children were doing reminded her of her own childhood. She told the patient about it. Marsha Halton sometimes listened, sometimes slept, but Mark and Marlene kept up the conversation at convenient times. Richard enjoyed it and joined in. As I left they were still telling family stories. Marsha slipped out the next day.
Don’t think I haven’t seen some hard deaths, though, or some messed-up families, or that every case goes smoothly and people always like the nurse. In my short time at the Colorado and Manitou Springs Mountain Hospice, every nurse case manager had been fired by at least one family.
One of the nicest women I ever met died the hardest. Her name was Francis Rousseau and she was a retired nurse. She didn’t smoke, ate a lot of fruits and vegetables, and walked every day.
Her organs were so strong that when she finally got cancer, the body systems wouldn’t break down enough to allow her to die. I know this is simplistic, but I’m convinced of its truth.
One day, when I was on-call, a rehabilitation center nurse called to say she had given the pain medications in the early morning hours without a good result. I was allowed to tell her to give a large dose of liquid morphine every hour, and said I would visit in about three hours. I did, and the patient was still in pain. “This is not going well,” I said to myself.
Our medical director has a German name, as does our pharmacist, Ulm Specht. I don’t mean to imply these men had recently come over from Germany. Their families had lived in the United States several generations. It was just odd that they both had funny names, Dr. Wohlfahrt and Ulm. Regardless, I liked Ulm Specht and he was a good pharmacist, which is almost as valuable as a good doctor.
After consulting with both, it was agreed we order a CADD infusion pump. It connected to a port that accessed her venous blood system. The CADD computer regulated the infusion of morphine. Morphine given in the blood stream, compared to a pill, is three times stronger. Ulm told me we were going to hit this pain hard. I liked his aggressive attitude.
That night, however, the patient was still painful. The doctor ordered Toradol. A Toradol shot, given in a muscle with a needle, is a super anti-inflammatory. NFL players sometimes use it. It did not make a difference for the patient. I didn’t understand how she could still have pain with morphine and Toradol in her blood stream. It is stressful when a patient is suffering and I felt a failure, even though I was working with a team.
Another nurse, Charlene Williams, took over at 8:30 the next morning. Her opinion was that the patient was having little seizures, which were shaking her brittle bones and causing pain. One couldn’t see the seizures, and it is possible to have silent seizures. The doctor tried Dilantin, a seizure medication. It worked and the patient became calm and peaceful, and died a few hours later. I thought it was a good call on Charlene’s part. I suspect more people die of seizures than we know.
The patient I saw slip out the easiest was not unlike Francis Rousseau. He had a healthy lifestyle, didn’t smoke or over-eat, and was a fundamentalist Christian with a good sense of humor. His name was Stephen Turner.
Mr. Turner had been in the battle of Midway, designed jet engines and ran a small company that wrote computer software before anyone knew what software was. He had a large and loving family.
He had multiple myeloma, a cancer of plasma cells, a type of white blood cell that manufactures antibodies. I read about multiple myeloma a dozen times trying to figure out what was going to go wrong at the end of his life, but like many diseases and disorders the literature will describe the condition and the treatment, but will not tell you what will happen in the last months of life.
Stephen told me about an elk hunting trip. When he was a young man with five children, he hunted for meat. He wasn’t some rich guy going to an exotic-game ranch in Texas to hunt scimitar-horned oryx for the trophy head. He would get rich, but not till later.
He was in eastern Oregon and saw an elk in an opening and shot, but it ran away. Stephen ran up the hill after it. He saw the elk again, in another opening, and shot, but again it ran away. As he continued up the hill, he saw the elk again, in yet another clearing, and he shot.
He got to the top of the hill, and three identical elk – he said they could’ve been brothers – lay in a circle.
I laughed. “Now that’s a tall tale,” I said.
He told me it was the truth.
I told him a story from “The Best American Travel Writing,” a collection of stories. This one is from Ian Frazier, titled “A Farewell to Yarns.” In it, he tells about a story he read as a boy. A German hunter named Baron Munchausen saw a stag in the Black Forest. The story may have been set in the 1700s. The hunter didn’t have a lead ball to place in the barrel of his musket, but he did have gunpowder and a cherry pit. He shot the cherry pit and hit the stag. The stag fell down, but jumped up and ran off. A few years later, the Baron was in the same part of the forest and saw a stag with a small but healthy cherry tree growing out of his antlers.
Stephen laughed. I told him there was an episode during the Lewis and Clark expedition where a member of the team got lost, ran out of lead balls, and was hungry. He loaded the musket with gunpowder, placed a straight stick in the barrel and killed a rabbit with it. Later he met up with the expedition again.
We laughed. “Those are good stories,” he said, but he looked reflective. “It makes me sad how much we lose from generation to generation. Like the story I told, which is true. We tell stories of our fathers and grandfathers, but over time we find we can’t recall the details of some story. And even if a story lasts a generation, it probably won’t last for two, and certainly not three generations. We’re all left to plot our own course. I guess that’s the history of the world.
“The stories change, that’s what makes me sad. Something that once started out as the truth becomes a myth, a family legend but not truly who we are. In two generations, no one will know who I am, really.”
“You have a nice family,” I said. “They’ll be OK.”
“I hope so,” he said. “They grew up in a different time. I suppose my children will be all right. How about the next generation? They are growing up in an entirely different era.”
I always took a little time to get to know my patients, if possible, but I only let the story telling go on about 10 minutes. I had patients to see and I didn’t want to waste Stephen’s time either.
There was more to Stephen than a business, a family and some funny stories. He had seen harrowing duty in the Navy. He once had to abandon two ships in one day. One was hit, and he bailed out. The ship that rescued him got hit, and he had to jump into the drink again. I respected those World War II veterans. I heard many stories from many soldiers. The war was as bad as they said it was. I wondered what the next generation would think about it.
Stephen did pretty well for nine months but toward the end, he was slowed by the multiple myeloma. He wasn’t confused, but he had to think about things for a long time before he answered a question. The bath aid was a saint, she showed so much patience with him.
One day he got up, walked into the living room, sat down, took a couple of gulps of air, smiled at his wife and closed his eyes. He was very quiet. His wife grabbed a stethoscope and listened to his heart. She knew right away he was dead. She marveled at how easy it was.
I thought about a woman I knew who ran an adult care home. She was a pretty, older Hungarian woman with the faintest trace of an accent, which I thought was cute. “God, may I die on my feet.” She used to say that little prayer all the time. It made sense because all her patients were bedridden. I thought Stephen Turner had accomplished the ideal.
It was the end of basketball season and Leanne said she needed to see me so I went to her house that night. We talked on her couch. “I don’t think I’ll continue coaching,” she said. I knew this was a big decision for her. “Also, I’m going to find another job. Someone out there needs an employee with a college education. I don’t know what job I’ll find, but there’s something out there for me. I need, I’m looking for, something more rewarding,” she said.
“I support you completely,” I said. “Just look and be patient and I’m sure you’ll find something.”
She kissed me. “Thanks,” she said.
When we went to bed, she changed into a new nightie and modeled it for me. It was nearly see-through and I marveled at her fine body. “Leanne, you are beautiful,” I said. “Come to me, I won’t last another minute.”
She laughed and turned out the light. She slipped into bed. “I know I’ve been cranky during basketball season, but I like you and I’m not mad at you. I’m not mad about anything.”
“There’s nothing to apologize for,” I said. “I know you’ve been very focused. I get it. No problem.” We kissed and I melted away in a sea of warm happiness.
Chapter six
I would sometimes go jogging with Leanne. The weather was better, spring was starting, so Shawna and I played three-par golf. It was not hard to juggle two relationships. I’m on-call a lot, so that was always an excuse if one of them wanted something. “I can’t talk right now. I’m on-call,” I’d say.
Shawna wanted to go to Park Place if we played golf. We could have some drinks and walk to her apartment. If I discovered a new Mexican restaurant, I’d take Leanne, but often we ate at her place. She cooked but I was her assistant, and I always cleaned up.
I was working on my house by now, so neither expected me to be with them all the time. I had hired a man to dig a hole and pour a concrete foundation. I was a nurse but there was something I liked about construction. I wasn’t quite ready to give it up. I like houses, yards, real estate, decorating and designing.
Shawna was very busy as well, and I didn’t grow up in Colorado Springs. Although I was beginning to make friends, it wasn’t like I had a network of people checking up on me who might ask about a girlfriend.
I seemed to have four lives. One was work, and one was work on my house, what I called my construction job. One was a network of friends and activities surrounding Shawna, and another was a network of friends and activities surrounding Leanne. There was a group of people Leanne and I ran trails with, and sometimes we had parties. But I’d never see Shawna at one of these outings.
Shawna’s gatherings were a little more upscale, usually dinner parties, often doctors and other professionals, so I was unlikely to see Leanne there.
How to describe my life: I’m not asking for permission. I’m not asking for forgiveness. I accidently have two girlfriends. I didn’t really mean for it to happen. I’m young and not quite ready to settle down. I actually like them both and it is exciting to see how long I can pull it off. It’s terrible to say, but if I get caught I’ll deal with it.
Two factors. I’d really rather not hurt anyone’s feelings. And, it creates a certain tension when one has two girlfriends. Everything I commit myself to, I have to think, will Shawna or Leanne be there?
Hospice work paid the bills and was my focus. I had a patient in the summer who had a life-sized George Burns cardboard cutout. He and his wife kept the living room dark. She said so it wouldn’t get too hot in the house.
I’d walk in, and be talking to the patient, and then I’d see something out of the corner of my eye, with my peripheral vision. I’d turn around and see George Burns and I’d jump. I’d go, “Oh.” The patient would laugh. I did this three times before I got used to it, and I did think it was funny too.
The old guy, my patient, had a tumor on his face the size of a baseball, which is one reason I think his wife kept the room dark. The patient used to swig drinks out of his 30-milliliter bottle of Dilaudid. Ulm Specht kept trying to get me to convince the patient to measure his medication, so we would know how much he was taking. The old man would nod and say OK, but he didn’t change how he took the Dilaudid.
To me, the man was scary, in the dark with that baseball-sized tumor on his face, but I was about to learn a hard lesson. I had a patient who had cancer in one of her nasal passages. The surgeon tried to fix it, but there was a gap in the skin across the top of her nose. To hide it she wore a dressing on her nose, and of course I had to change it. The first time I looked into that gap, I saw the nasal passages that I’d only previously known from an anatomy textbook.
Inside her face there was some red, inflamed tissue, and some black, dead tissue with a wicked odor. Finally there were the lines of skin, across the face, which were unable to close the chasm and exposed the horrible sight. I put a nice, clean dressing on her face and taped it down. I ordered Flagyl, which stops the growth of anaerobic bacteria and controls odor.
I went to my pickup and gave myself a pep talk. Buck up. Be nice to this patient. Don’t let on that seeing the inside passages of her nasal cavities freaks you out. She lived for two weeks. She never achieved peace. She was never OK with what happened. There were no Elizabeth Kubler Ross moments. Kubler Ross wrote about the end of life, how everyone would go through five stages and have peace at the end. The social worker Mattie Green was a big fan of Kubler Ross. I noticed Mattie stayed away completely from this patient. She couldn’t stand to think about the state of the cancer behind the dressing on her nose. I said a prayer for the patient.
Chapter 7
I talked to a pharmacy assistant and ordered meds for three of my patients. I went to the supply room and took some oxygen equipment for one of my patients, and a medication box for another. I saw a patient who had COPD. He used to like golf. He had played Saint Andrew’s, a famous course in Scotland. On one hole, he had a tough time and the ball kept falling back into the sand trap.
“The caddy, an old man, easily 80, told me, ‘Lad, Sam Snead had the same thing happen on this hole.’ ”
I laughed. I got in my car and later, helped another patient fill up a med box. We looked at all his medications and I promised to make up a med list to go with the med box.
At the next house, I listened to the patient’s lungs and heard rales. I recognized a particular sound. I advised the wife the patient’s lungs would be full of fluid, probably by night time, and that the rattling would be terrible. I said he would soon be actively dying ie his lungs would fill up with fluid, his heart would work hard to move oxygen through the body but it would fail and he would die of a heart attack. I said the doctor would give an antibiotic, but I had never seen an antibiotic work at this stage. Too many body systems were failing.
I said the patient could go into a coma. Regardless of the coma, give the liquid morphine and the lorazepam. “The patient will be comfortable, but you’ll hear the rattle and won’t like it,” I told her.
Some nurses would order atropine drops, an anticholinergic, but it doesn’t work, just makes the mouth dry. In time, the patient will get dehydrated on his own and the rattling will stop. Hopefully, it will be peaceful but one never knew.
The next patient had dementia. He was new to me. The wife knew what she was doing but sometimes he was hard to handle. I noted the patient was able to understand much of what I was saying to him, and he was still solidly built. I recognized a pattern that remains a problem to this day. Many dementia patients live for years before they deteriorate and die. Hospice was supposed to be for the last six months of life, but I had a feeling this man would be around for years. I have heard of many dementia patients on hospice for three or four years.
I got back in the miniature Toyota Tacoma pickup. I had to drive about six miles to get to the next patient’s house. She was an older woman with chronic obstructive lung disease, COPD. She was a little paranoid and asked me to clean the filter on the oxygen concentrator.
Now, an oxygen concentrator takes room air and removes most of the sulfur and nitrogen and turns it into about 99 percent oxygen. A motor hums and it generates a little heat. The filter doesn’t need to be cleaned every week, but she wanted it done so I did it. It’s easier to keep someone happy that way. Also, the oxygen tubes and canulas I had collected at the office that morning were for her.
I got back in the pickup, stretched, and headed back to Manitou Springs for my last visit. I wondered if I would be more comfortable in a full-size car. It was at about this time I bought the Toyota Camry.
The man had prostate cancer, but at the time was getting along OK. We discussed his breathing and his medications. He had once been stationed at the military base in Colorado Springs and we talked a little about the history of the area, and his military service.
It was 3 p.m. and my visits were done, but I still had work to do. I went home and took a lunch break, and did some paper work and tried to relax but thought about the next day’s schedule for a half an hour.
Although it was important for me to work, I blamed my vehicle, my pickup, for my problems. The tiredness, the worries, the small aches in my body. If I could just kill my car, maybe live on the beach in Hawaii, my life would be OK. I’d live next to a grocery store so I’d never have to drive again. No more delivering bad news. I knew I would have to make a visit to the family of the man who would be in a coma tomorrow.
When I had been in Hawaii with Mike, we stayed at a golf course in Maui. The full-length course in front of us featured a pond a quarter mile in diameter. Most golfers were able to hit over it. We would drink our coffee in the morning sun, on a little deck, and watch the golfers. We’d cheer when someone hit the ball across the pond, and moan when they hit the ball in the pond.
The sun was out in Colorado Springs and it was a beautiful day. I knew in a few minutes I would recover from work, and have some energy for a run, or to work on the house. I just needed a few minutes to recover. But somehow, for the three years I had that job, I imagined I only needed to kill my car to escape the stress of the job. I did not have any idea about the details, how it would work.
I didn’t know how I’d earn a living in Hawaii. I didn’t know how to kill a car; I just knew if I could figure it out my life would be OK. The job was too much driving, too much sadness. The solution, kill your car and the patient will live.