Chapter 15

            Things were changing at work. Betty Floral, who negotiated every pharmacy and equipment contract, who laid out every policy, who set the tone for the entire organization, announced she was leaving. I was crushed. It seemed to me we had a special friendship and I went so far as to ask her to stay.

            She was young, in my opinion, only 57. But Betty and her husband had saved money and now they were going to play while both were in good health. They were going to travel, work on their full-length golf game, baby-sit the grandchildren.

            Roberta Edwards retired, too. It was a different case for her. I think she knew she wasn’t up to the demands of being charge nurse in a stressful environment like ours. We hired additional nurses for the purpose of working evenings, holidays and weekends. This eased the pressure on the case managers. I may care a little too much about the organization because when it doesn’t function like it should, it bothers me. I tried to get along, do a good job, but not let it bother me when I thought poor decisions were being made.

            At the Colorado Springs hospice, I took things personally, try as I could to be detached. I wanted the organization to be successful. The mission, caring for dying people, seemed noble enough.

            Edie Banks, our new director, wasn’t a hands-on manager. One day, when I went in to see her, I was told she was out helping her son shop for a car. Another time, I went into her office and she was in there doing her taxes. She was never in the patients’ homes, like Betty Floral, and in fact took pride in being repulsed by blood, phlegm, vomit or anything remotely unpleasant.

            We had a new on-call nurse, Michelle Ryan, and she was a dynamo. I liked her a lot. She made as much money as a case manager, she took on so much work. But, hospice work when possible should be done during the week, not on weekends by the on-call nurse. During business hours the doctor’s offices, the pharmacy and the equipment company were open.

            To me, Lori Hitt, the new billing officer, was the most dangerous employee of all. Once, our bath aid, Sally Hall, asked for a raise. I didn’t hear any of the conversation, but at some point Sally walked back to her desk, a frustrated look on her face.

            Let me tell you, a good bath aid is hard to find. Sally was friendly and fun. The patients liked her. She was single and was just the kind of woman other women like to set up with dates. The men liked her because she was pretty, but not stuck up. She was as professional as she could be.

            All I heard of the conversation was Lori Hitt yelling, “You make pretty good money. After all, you’re only a bath aid.”

Now, here was a woman, Lori Hitt, a little overweight and a little lazy, who sits in her office all day talking to her husband or her children or her mother, and she’s yelling at one of the hardest working employees we have. I would pay the bath aids more. They weren’t making anything like the $50 an hour the nurses were getting. I would’ve hired another bath aid and made the job more lucrative to them. They are the front line for a hospice. They work hard and do a lot of important teaching about bed care.

            About this time, we had a volunteer coordinator quit, saying he was going to enjoy his retirement. The coordinator was a good guy, very friendly, and I found him quite interesting. He had a doctorate in religion. We had a good group of volunteers. Apparently he made some women uncomfortable. I have to tell you, though, if he was sexually harassing someone, I think I would’ve heard. I was in the office most afternoons.

            Then, at a staff meeting, with all the employees present, Lori Hitt said, “You know, our volunteers do a good job. Pat them on the back when you see them. Well, don’t touch them,” she said, and laughed an evil laugh.

            I felt if there was a complaint against the volunteer coordinator, it should have been pursued. I don’t think he should have been slandered in front of all the employees.

            Every year, we have a memorial service for all the families we’ve worked with. We read the names of all the people who have died in the past year. It’s a nice service. People like it. The year Lori Hitt organized it, she left off four names. It was typical of her. All good intentions and no follow-through.

            I don’t know what a professional management consultant would say about all these things. Maybe I shouldn’t have an opinion. I tried to focus on my case load and leave the office to the new regime. Lucille Hollis said she didn’t think the Colorado Springs hospice was well managed. As I said, I tried not to let it all bother me as I didn’t have the power to change it.

            I talked to Shawna about swelling, edema. It can be caused by a number of factors, poor heart function and cancer tumors in the pelvic region among them. Tumors in the hip region can also cause people to fall and break hips or lose the ability to walk altogether. Families are very sad when they learn this. That’s cancer. It hurts you in a thousand ways.

            Shawna said medically mild edema is no big deal, but it is often one of the things that bother people the most. Maybe the once-shapely legs now look like pillars. Another common complaint for men is a loss of muscle mass in the arms. I can’t tell you how many times I’ve rolled up a man’s sleeve to take a blood pressure and had him say: “I used to have some muscles in these arms.” Often they have cancer, or advanced heart disease, and I think, “Well, you have a wasting disease.” But I don’t say it. Life is cruel enough.

            Families I work with sometimes say, “Well, you’ve surely seen this before. I’m sure it’s old hat to you.” The truth is, I don’t think you ever get used to people dying. Every new patient I see, I don’t know if it’s going to be a good case or a bad one. Some people slip out nice and easy, but others take a long time and die hard. No hospice nurse can predict which patient will take what course.

            Some of the nurses say they appreciate life more, being hospice nurses. They know life is short and live accordingly, but I don’t see evidence of this. Dorothy Brown watches television every night. Betty Roth still smokes. Lucille Hollis refuses to get her financial affairs in order. Hell, Shawna refuses to get her financial affairs in order.

I lay in bed one night, stealing glances at Shawna. I tried to freeze my life in place. Day after day, driving in my car, dealing with the sadness of families losing a loved one. Yet my own life was a fairy tale. A little golf, a drink out of a frosted glass, good sex, sleep in a beautiful bedroom. Even cool Colorado air, not that stuffy Nebraska heat.

            I wondered at what point in my life would I leave behind this imperfect job, leave two women, and take care of my wheezy, dying father. It’s not my fault my father is dying. I didn’t smoke all those cigarettes. And so why, on those lovely Colorado nights, did I feel responsible.

            Many people think Western doctors are uncaring, too brief with their visits, too tied in to medications provided by large corporations. That is not my opinion. I had good, brief conversations with many doctors. There is not any money to be made on hospice patients. They helped the nurses solve many problems, wrote many prescriptions, but they didn’t make any money. I never had a doctor begrudge me the time he or she helped me with a problem. They want to do the right thing.

            Sometimes doctors barely knew these patients. They moved to Colorado Springs to be with some family members, and are suddenly very sick. Yet these doctors would spend time exploring what would work in each individual case. I have found most doctors to be quite caring.

            It was during this period I had Max Bell, a man with congestive heart failure and chronic obstructive pulmonary disease. I ordered oxygen for him. Organized his medications. Placed a bottle of morphine in the home. Mrs. Bell had an African grey parrot. This parrot imitated people and animals. It could bark like the little dog they had in the house. It occasionally repeated my greeting, “Hey.” I didn’t even realize I was greeting people with “Hey” until I heard the African grey parrot say it.

            The parrot also had Mr. Bell’s laugh down cold. If you shut your eyes, it would be impossible to tell if the laugh was coming from Mr. Bell or the African grey parrot. It was eerie, uncanny, funny. I have to say, after Max Bell died, I wondered if it gave Mrs. Bell the creeps, or a feeling of comfort, to have the bird laugh his laugh.

            I met Barry Wilson, a former pilot in Vietnam. He believed, strongly, his brain tumor was the result of his exposure spraying agent orange, the herbicide that was used so much during that war. At one time, Barry had been a young, talented pilot.

            He told me a story about flying some generals on a tour of Vietnam. One of the generals said, “How old are you?” Barry said, “I’ll tell you when we get back.” He was 22.

            Barry was a person who asked me what to read about end of life. I said Tolstoy’s “The Death of Ivan Ilych.” Mattie Green gave him some brochures describing the symptoms of depression, as if he wasn’t personally acquainted with them already.

            I worked with a doctor several times, Jerry Kusmo, who was good. I had a cardiac patient who said Dr. Kusmo was the only doctor who could adjust his medications so that they worked.

            Dr. Kusmo had another patient, the successful car-dealership owner Robert Neil. Robert had diarrhea and went to see Dr. Kusmo, who had him take Imodium, which is an effective diarrhea treatment. Robert Neil started taking the Imodium by the handful, and went with his wife for the winter to Arizona.

            After he was there for a while, he got sick and the doctor said he needed to have his colon scoped. Robert Neil returned to Colorado Springs, and Dr. Kusmo ordered the colonoscopy. There was cancer in the colon, and some unidentified spots on the lungs.

            At this point, the story takes a path I’m unable to verify. The entire time I worked with Robert Neil, he told me how much he liked working with Dr. Kusmo, but he said the doctor made a mistake not ordering the colonoscopy earlier. “He made a mistake and I’m paying the price. I have no bitterness over this. I have a great respect for Dr. Kusmo,” Robert Neil said. “He’s human, but it was a big mistake. Don’t tell him you know.”

            I said OK. We tried anabolic steroids on Robert, hoping it would build strength. The truth is, he died emaciated and weak like every other colon cancer patient I’ve had.

            I talked to Shawna about the case. She said if the anabolic steroid had been tried earlier, perhaps he would’ve built up some strength. The point about the anabolic steroid was well taken. It would take a practitioner with good skills to be smart enough to prescribe the steroids six months before the final six-month decline.

            We also talked about the doctor’s supposed mistake. “The doctor tried the obvious remedy first,” Shawna said. “Many cancer patients think their cancer should have been diagnosed earlier. Perhaps he made a mistake, I don’t know.”

            There are many things about hospice medicine that are yet to be known. I have a feeling at some time we will look back and realize how little we knew about end-of-life care. I’ve often wondered if testosterone cream would help some of my patients. Or erythropoietin, the medicine that produces red blood cells. Maybe more use of hypnotic sedatives.

            I once had a woman patient, Nettie Connett, with a rare case of systemic skin cancer. The doctor who took care of her was a famous researcher, formerly at Johns Hopkins. She tried every kind of chemotherapy and radiation, and suffered a number of terrible side effects over 20 years. She described herself as a fighter. Her daughter, late in life, had a son. It was the only grandchild and Nettie was determined to watch him grow up.

            I talked to the doctor-researcher, and have read newspaper stories about him, and I know his goal is to cure cancer. Therefore he feels people who go through trials are heroes. “There is no way to find a cure, to find the high percentage way to do things, if people don’t enter trials,” he told the Colorado Springs Telegram.

            When we got Nettie Connett, she was miserable, not sleeping and taking Percocet for pain. We put her on a time-release pain medication and gave her lorazepam to sleep. Things were improving a little, and she told me she was sweating through gowns at night. She would line them up, all in a row, and sometimes sweat through eight in a night. I was aghast at this news. I’d never heard of such a bad case of night sweats.

            Many cancer patients have this symptom. Dr. Wohlfahrt said cancer causes a chemical reaction that results in calcium leaching out of the bones. This imbalance causes other electrolyte disturbances. The calcium causes the temperature control area of the brain to heat people up. But, changing eight gowns in a night, that’s a lot.

            “I’ve never done well since I got cancer and they took me off estrogen,” she said.

            I wrote a note and faxed it to the cancer researcher. I said I know cancer causes an upset in electrolytes that can lead to a clammy, sweaty feeling and that there is no treatment for this. However, I said the woman is sweating through eight gowns a night. She would like to start back on estrogen, which is contraindicated. Would you consent to starting her on estrogen again?

            He said OK and named a dose, and for some reason we got a victory. Her pain was controlled, she was sleeping, and she swears to me she never had night sweats again. I have talked to a number of oncologists about this and they dismiss the idea. Shawna said it could have been a coincidence. Maybe there is some other explanation. Still, a win is a win.

            Daniel Reed was the opposite of Nettie Connett in terms of the amount of treatment he wanted for cancer. He was a Christian, and he had esophageal cancer, possibly from painting cars without a mask, which is how the old guys used to get it. He knew there was little chance of recovery utilizing surgery, chemotherapy and radiation. He was going for maximum use of his time and quality of life.

            Daniel Reed was a charming man and he looked good despite his cancer. He was trim with good shoulders when I met him. He lived as close to Christian ideals as he could. His wife confirmed this. He pretty much always did the right things in life, and he was non-judgmental and forgiving of others. He had played competitive golf on a professional tour, not the PGA but the Midwest Tour, into his 30s.

            He said entry fees would be in the $25 to $100 range, and winnings in the $1,000 to $3,000 range. He once hit a shot over a 60-foot tree, onto the side of a hill. It rolled down the hill and onto the green near the pin. This was on a golf course he’d never played before.

            He played well enough in a few tournaments to qualify for a PGA Tour event, but he didn’t make the cut and never got back to the big time. However, he traveled all through the United States. Sometime after that, when he was 40, he took a job selling irrigation systems, which took him around the world.

            He told a cab driver in Hong Kong once he wanted to go someplace to sleep, and was dropped off at a whore house. He walked into the bar and was surrounded by women. “It was hard to walk out,” he said.

            He spent 15 years of his life buying and selling cars out of the tidy five-acre parcel and shop near Pikes Peak. His young wife said, “He’s a horse trader, honest but sharp as a tack.”

            At the end of his life he took 900 milligrams of time-release morphine a day and was alert enough to drive. I never tell anyone not to drive, but I gave him my standard line. “If you get in an accident, and someone gets hurt or killed, you’ll be liable, plus you’ll feel terrible about it,” I said.

            Daniel Reed drove to breakfast with his buddies. He picked up parts to finish the cars he had in the shop. He tried to show his son tricks to fixing up cars. He drove his 13-year-old daughter to soccer practice. He ate ice cream every night.

            But he withered up, lost the heft in his shoulders and his face drooped. He suffered with pain when he forgot his pills, and eventually became bedridden. It seemed at once, he showed his age. Just before he slipped into a coma, we talked. “I’ve been praying to get well,” he said.

            “I suspected as much,” I said.

            “I thought it might happen. That I might be someone who beat the odds, got some more time. I’ve got this family. I really wanted to see them through. It wasn’t all selfish.”

            I wondered how I had managed to get two Christian golfers in my time at hospice. Daniel, meet Mr. Loud-talker.

            He also discussed the most common problem, the most complicated problem, there is in hospice, the decision to treat cancer or not. Daniel Reed decided not to treat his. Now he wondered how he would have done had he treated it. Nettie Connett went through years of trials, and suffered greatly, and wondered if the extra time was worth it. The answer to both questions is the same. No one can know the answer as to whether a person should go through treatment for an aggressive cancer.

Mollie Kahn was the most in-love patient I ever had. She was on her third marriage, but at every opportunity told me about her second husband. He had died 30 years ago of a heart attack.

            It was obvious, though, that he was the one she loved the most. She married young, at 14, and had three children. She said that was the Southern way. She finally wised up and divorced the man because he was an alcoholic. She worked as a waitress to support herself and the three children until she met her second husband, who moved her into his house and provided for the three children as if they were his own.

            They hunted and fished together, and it was obvious they loved that lifestyle. Camping and cooking and drinking a beer in the great Colorado wilderness.

            He had his first heart attack at age 45. They owned a small farm in Colorado. Mollie Kahn loved that farm, talked about it all the time. On one part of it, they had Christmas trees. After heart surgery, husband two went right back to work. One day, Mollie Kahn looked out the window and there was her husband with another couple. He was digging up a tree for them.

            Mollie, according to her version, sprinted across the field yelling. “What in the hell are you doing?”

            Her husband said, “They want to buy this tree, but they want to plant it in the yard, not have me cut it off.”

            “You just had heart surgery and now you’re digging up a Noble fir. You have no sense.” She took the shovel, dug out the root ball, they lifted the tree out of the hole and loaded it in the trunk. They got cash for the tree.

            Two days later, the woman returned by herself. She went up to Mollie and said, “I want to thank you and your husband. My husband had heart surgery a year ago, and he’s been walking around like he’s helpless. When he saw your husband digging up that tree, and heard he’d just had heart surgery, it really caught his attention.  The past two days, he’s been back to his old self, working on all sorts of projects.”

            I laughed to myself as I thought of the story. Mollie Kahn eventually had to go to a nursing home. Her tall, frail third husband was unable to lift her. He was no spring chicken and love’s not enough to get a person from the bed to the easy chair.

            I would visit several times a week as the nursing home was close to the hospice office. In the halls, there was a woman with dementia in a wheelchair who would always look at me as I walked by and say, “Help me up.”

            The first time she said this, I said, “I’m not on the staff here.” Later, I’d just say, “I’m sorry.”

            One day, I was walking down the hall talking to Mollie Kahn’s nurse and the woman wheeled up to me and said, “Help me up.”

            The nurse said, “Connie, you are up.”

            “Oh, thank you,” the woman said.

Chapter 16

            The time I was at Colorado Springs, one fact was always on my mind. My father had emphysema, which contributed to his congestive heart failure. When one is older, and the heart doesn’t pump as efficiently as it should, this is congestive heart failure. After three years at my job, I got a call from my sister Constance that my father’s CHF was worse and he was put on hospice.

            It was interesting. A CHF patient would go from say 30 percent efficiency to 10 percent efficiency (called the ejection fraction, the flow of blood from the left ventricle), seemingly overnight. It was a universal thing for the patient to say, “Why the sudden drop in heart function?” The cardiologist would say, “I don’t know, that’s just how congestive heart failure works.”

I was raised in Lake City, Nebraska, about 70 miles south of Lincoln. My father’s name is Lake Colton, and his sister’s name is Sky. It was the one creative thing my grandfather ever did. My grandfather grew the ranch from 160 acres to about 1,000 acres. It took him a lifetime and all I ever knew him to do was work.

            My father got the cool name and an entrepreneur’s spirit to go with it. Lake Colton increased the farm from 1,000 acres to 7,000 acres. In that time, he also purchased a tire store and adjoining service station and restaurant, and a grocery store. He ran the grocery store and the tire store, and rented out the combination restaurant and gas station. His only vice was smoking.

            I knew in Lake City, I would only ever be known as Lake Colton’s son, and I moved away after high school. I was determined to make a life for myself on my own terms. My father was upset at first, especially with the skiing, but after I graduated from nursing school he told me he was proud of me. We were on good terms, although I had spent little time in Nebraska since high school.

            I told Leanne I was going to break up with her and go back to Nebraska. She was sad at first, but took it OK.

            I told Shawna I was going to break up with her and go back to Nebraska, and she was sad at first but seemed to take it OK.

            I put my house on the market and gave a month’s notice at work. I had about $200,000 in the house and sold it for $300,000, so I would return home with money in my pocket. I had tools, nursing books and ski gear, and I didn’t want to move all that to Nebraska, so I put them in storage.

            During my remaining time in Colorado Springs, I only saw Leanne a few more times. I knew she was a popular addition to the police department and I heard she was dating someone she worked with. I heard Shawna was dating the tall doctor again. I guess I got out of the relationships everything I had put into them, which was nothing. No one was going to miss me in Manitou Springs. I admit I had the blues. No one even waited till I was out of town to start dating.

            I thought about funny incidents, sad stories and weird occurrences as I drove across that great desert plain between Manitou Springs and Lake City.

            We had a chaplain, Ben, and he wondered if there was a way to communicate with dementia patients. He knew that some of them hummed, so he tried it himself when he was with them.

            I had to see a patient at an adult care home, a bit of an emergency, and when I went in the house Ben was with another hospice patient, a woman with dementia I didn’t know. The woman and Ben were both sitting on the couch, humming. Ben had a serious look on his face.

            It was all the caregiver and I could do to keep from laughing. I told Lucille Hollis I had visited her patient and Ben was on a couch, humming with her.

            “That is so weird,” Lucille said.

            I had a patient whose wife had died, and he was living by himself in a small but nicely decorated house. I met a woman caregiver and she said the patient was in the basement. Apparently he and his wife led different lives on separate floors of the house. He may have stayed in the basement too long; he was comfortable there.

            The space was dark and dusty, and there were boxes, discarded furniture and junk down there. He had an easy chair, table and TV. There was a bathroom in the basement.

            The steps were steep, a solid wood construction, but with a flat concrete floor at the bottom. The caregiver’s number one concern was that the patient insisted on staying in the basement. The patient came upstairs for the first visit with me. Before I left, I watched him go down the steps. He would put a leg out in front of him, and drop down as if he was stepping off a mountain in a cartoon. It was frightening.

            When he stepped out like that, there was always a step below him, but I could easily imagine him crashing to the floor below. I called the doctor and told her the situation in the home. I didn’t mind working with the gentleman, but he was not declining and we discharged him after three months. I heard he never moved upstairs.

            I liked a man I worked with who had pancreatic cancer. He slipped into a coma on a weekend and the family never moved him from the easy chair to a bed. He hadn’t wanted a hospital bed. He was a civilian.

            It is mostly men who feel this way about beds, and fortunately only a small percentage. When I visited on Monday he had been soiled for two days and had a sore on his coccyx. The family hadn’t tried to clean him up. On that day, his son expressed surprise he should be clean, but he helped me. The man died later that afternoon. Sometimes one does not get a good outcome. People should not die, soiled and with a bed sore, on an easy chair.

            Hospice received quite a generous donation from a rich man named Alexander. He would be recognized if I gave his full name. He was eccentric and gay, and had large and colorful paintings of male genitalia on the walls of his home. It was surprising to see at first, but as a nurse I had seen all kinds of drawings and photographs of the human body so I was undisturbed by it. In fact, although I faced giant penises and firm buttocks, I didn’t remark on the art. The patient was close to dying and had only the energy to say hello. A male friend was taking care of him. I thought he was doing a good job and I told him so. Alexander died shortly thereafter, apparently without problems.

            I had an on-call visit one Saturday to a man who was not my patient. He lived in a mobile home. He had a full-length picture of a naked woman above the headboard of his bed. She was reclining on the bed and had large breasts and a full bush. His wife said her husband had found the picture in an old western saloon.

            I was surprised she allowed it, and tried not to notice as I took the man’s vital signs and delivered the bad news that he had picked up pneumonia.

            I had two patients, one right after the other, who were quite angry. Mr. Cabledue was 70 and had aggressive prostate cancer. “I’m a runner,” he said. “It hardly seems possible I could have cancer. Two years ago, I ran a half marathon.”

            Mr. Doris was from Kentucky. He liked living next to a cemetery. It was quiet as no neighborhood children would play there. He was a dour old man.

            His father had been a smoker and a coal miner and died a miserable death from lung cancer, black lung. Mr. Doris worked for the telephone company, and was now retired. I don’t think there had been any women or children in his life. It seemed unlikely he had had any improprieties in his life. He had never smoked a cigarette and of course had not worked in a coal mine. It seemed he blamed me for the fact he had lung cancer. “One doesn’t have to be a smoker to get lung cancer,” I said, but I don’t think he believed me.

            Two more civilians.

            A patient had green urine and we discovered a certain dye in a popsicle could result in green urine.

            My first week working for hospice, I had a dementia patient on a feeding tube. When a patient gets weak and begins to aspirate on food, they are at risk for pneumonia and the trend at the time was to put them on a feeding tube.

            Now, this tube goes through the nose and passes to the stomach. It’s not a pleasant procedure putting one in, certainly not for the patient, and forcing people to live seems to prolong a miserable life of bedsores, urinary tract infections and constipation. After that, it seemed to me the trend had passed, and I never saw another dementia patient with a feeding tube.

            A woman I met had cancer of the wrist, and it reminded me of the patient with pain in his penis. The oncologist offered to remove the wrist, thus preventing the spread of cancer, but the woman was old and said she was ready to die. It was an odd case, and the nurses and family were either uncomfortable with her decision or distressed by hearing of it. No one would talk about it. They just wanted me to examine her and say she seemed comfortable.

            I arrived home in Nebraska and began to settle in. My mother and father lived in a small house in town, in Lake City. My father said he was glad to see me.

            He had me drive him around every day. We’d visit the grocery store and he received a little report from the manager. Then we’d go to the tire store, and he’d get a report from the manager there. We’d go to the restaurant, and have coffee. The restaurant and the service station each had an owner, Jill Gables at the restaurant and Mark Jayson at the gas station. My father was their landlord.

            Then we’d visit various farm properties. He had a name for all of them. The place where my late grandfather’s house sat was the Homestead. His house was old but a young couple rented it. There was the Smith Place, the Crossroads, Big Valley and Lakeside. He had plans to develop Lakeside into home sites, but he had to get the county commission to approve the plan and find a contractor and maybe a real estate agent. Time was running out for Lake Colton. He knew he’d never develop the property, but I guessed Kathleen would.

            My father never liked the hands-on work of being a farmer. He wasn’t a mechanic like grandfather. He didn’t like driving a tractor or working cattle, but he knew everything about agriculture, especially the financial end of it. My sister Constance, second in the family, is married with three young children. She has a part-time job as a web-page designer. My oldest sister, Kathleen, is a lawyer with one son, and she likes to work on the farm. She practices law and helps my father run his small empire. My mother, Doris, who is healthy and never smoked, said she was glad I had come home. Father needed constant attention, but mother and my two sisters had their hands full.

            One day, as we were making the rounds, my father said, “Thomas, I’m glad you’re home. You know, work is not everything.”

            It was hard for me not to laugh out loud. His whole life had been about working. I admired what he had accomplished, but he had enjoyed it, too. He was always happy when he was working, talking to people about a deal, trying to figure out when to sell wheat and how large to make the cattle herd, what tires to stock and updates from the manager of the grocery store.

            I could discuss all these subjects with him, although I knew little about tires and nothing of the grocery business. But I knew all the crops he was considering, and I’d worked cattle and knew all the terms he was using. I felt useful taking him on his rounds. He had to have oxygen now, so I’d carry the tanks for him.

            When we finished our rounds, he liked to smoke a cigarette before going home. One day he said, “No one else lets me smoke. Why do you?”

            I laughed. “The end result will be the same,” I said. “I was a hospice nurse once, you know? We become jaded.”

            He laughed. “I had a good life. Man, do I hate to see it all end.” We were both sad for a while after that.

            During the time I was home, I got to spend time with my nephew Matt, Kathleen’s son. He is 10. As I looked at his slim body, I couldn’t help but think that life was about being young. Having big dreams. Being 16 and falling for a girl so hard you couldn’t stand it. All of Matt’s body parts were young. Cells, arteries, lungs, heart, brain, all primed in most of us to last a lifetime.

            As you get older, it’s about having a career, money, a house, family. These are good things, too. But also, you’re responsible. You’re responsible for people because you love them. You want to be responsible, but it’s not like being young when all you want to do is play sports and have fun. Laugh with your friends and talk to girls.

            I had purchased a pellet gun and we’d go out and shoot cans off a little brick wall. We had free-throw competitions. I showed Matt how to throw a lasso. We played darts in the barn.

            I also enjoyed Constance’s young children, a boy and two girls. It was interesting to me how each child had his or her own interests despite having the same parents and growing up in the same environment.

            My sisters would look at my father sitting on the couch and say, “He looks fine.” They believed my mother had jumped the gun in calling for hospice and I should go out and find a job. My father had just enough oxygen to sit on the couch. But exert himself at all, and he went into oxygen debt. It would take considerable time for him to recover after any activity. I had had patients who were not as sick as my father who had died. But I didn’t argue or state the case with my sisters. He could live as long as he wanted, no one was pushing him out the door. My sisters made plans as if he would be around forever. It made me sad that I knew better.

            Here’s the thing about end of life. The books you read about hospice won’t tell you this. Your doctor won’t tell you this and likely not even the hospice nurse. Even with morphine you will feel like crap and a drugged sleep is the only escape you’ll get. You’ll hate not eating and not being able to stand up by yourself and not being able to do a damn thing about it. No more will be resolved at the end of your life than was resolved during the living of it. They don’t tell you death will be smelly, and the family will get stressed out, and you’ll be weak just like you never wanted and you’ll hate it. You will dislike much of your end-of-life decline.

            I got home from shooting the pellet gun with Matt. I enjoyed his company. My father was sitting on the couch with my mother watching television. He was wearing his oxygen and holding an albuterol inhaler. He waved hello to me. My mother smiled. I sat down on the floor and watched the 6 p.m. news with them. The local, Lincoln, Nebraska, news. I swear, some of the people on the news had been on when I was a child. Don’t these people ever move on?

Chapter 17

            My father, mother and I settled into a routine. We would all wake up at 7 a.m. I would do some stretching exercises in my room and go for a run. My father would drink a glass of Coke with ice and watch a morning sports show. He said Coke cut the phlegm in his throat. Then he’d have a cup of coffee and take his pills.

            My father once had a friend who was diagnosed with Alzheimer’s at a fairly young age. For years, my father worried he would get Alzheimer’s. He didn’t think about dying from chronic obstructive pulmonary disease.

            After my run, my mother would go downtown and run errands and see friends. With me at home, it gave her more freedom to get out of the house. She told me in private she was grateful for it. I said I understood.

            It would take forever for my father to walk to the shower. After the shower, I would dry off his back and feet. He couldn’t reach his feet. Slowly, ever so slowly, he would dress. He would stand and look out the window. Each effort made him short of breath, so we had to rest between each chore. Put on a t-shirt. Rest. Put on a pair of pants. Rest. Walk to the kitchen. Rest.

            Then I’d shave him and he’d eat a little bowl of cereal with half a banana. I’d read the newspaper to him. He pretended to be his old, sharp-brained self, but it wasn’t the same Lake Colton I’d grown up with in this very house. He had no comments on the news. No thoughts about how he might use the news to his advantage in one of his businesses. No comment on any business practices he approved of, or disapproved of.

            He’d brush his teeth. Then we’d walk to the living room to rest until lunch. I would read him a lesson, accompanied by a verse from the Bible. These were prepared by his church. He seemed to enjoy it; he wanted to do it every day. I would shower, put on jeans and a t-shirt, maybe read a little.

            In the afternoons, we would go for a ride. For a while, I had a hard time figuring this out. He was obsessive about going for a ride even though it was getting to be quite an ordeal. He had to get into a wheelchair, go down the ramp, stand up, take a step to the car, sit down in that low car seat. It was exhausting to him.

            One day, I asked him about this. He said the rattling motion of the car helped him breathe, and suddenly I understood. Not only did it feel best to be upright – almost all COPDers feel this way – but the motion of the car helped tap down any fluid in the lungs. In addition, it was a part of the routine that relieved the monotony.

            So we drove. We went downtown, out to his farm land, to the tire store, the grocery store, the restaurant and the service station. We drove by construction sites, commenting on the progress being made.

            My mom and sisters were welcome to go. We didn’t make any stops now, but he enjoyed their company when they could work it out. We’d stop and talk to people, but getting out of the car was too much effort, and anyway he was probably done drinking coffee at the restaurant in the afternoon. I always had to be there to check his oxygen tank or tanks. Anyone in the family could have done it, but he wanted me to do it.

            “How much oxygen in the tank?” he’d say.

             “Still a half a tank in this one.”

            “Would you check it again when we get home.”

            “Sure,” I said. “We don’t want to run out of oxygen.”

            In the end, my father could walk, but he couldn’t stand up, couldn’t get out of the chair on his own. I’d have to lift him up. My mother didn’t have the strength to do this, and my father wouldn’t let my sisters or other family members do it.

            On the way to the bathroom one night, he ran out of air. I knew what was going on. My father had just enough oxygen to sit on the couch, but exert himself at all, and he went into oxygen debt. It took 45 minutes for my father to recover that night. Finally, he was back on the couch. He was OK.

            One fall day, after our ride, I was going to take the car to go get groceries and noticed the tire was flat. I started to change the tire, but the service station had given my mother the wrong rim on the spare so the car was locked in place. It was dark, and I left the car outside, upset that I hadn’t been able to fix the flat during daylight hours. Meanwhile, my mother was cooking and the stove gave out. It had worked for 30 years and now, for some reason, it wasn’t working. My mother went next door, to the neighbor’s, to finish cooking dinner in their oven.

            I was frustrated, missing my life, and my mother went on and on about the oven. That she would have to call the repairman, or maybe buy a new oven, and why the hell now when there are so many little things to take care of. Finally, my father said, “My day hasn’t been too bad.” I thought it was a weird thing to say, but oddly it gave the day some perspective. If anyone was entitled to complain, it was my father. Nailed to the couch except for a ride each day.

            That night, after my father had gone to bed, he rang his bell. My mother and I went down the stairs. He said he just couldn’t breathe. Something wasn’t right. I convinced him to take a half a dropper of morphine. “It’s for air hunger,” I said. “It’ll help.

            The morphine, along with a breathing treatment, worked, and a half an hour later he was sleeping. In the morning, he was in a coma. I could hear the fluid rattling in his lungs. I didn’t need my stethoscope to hear it. I said we should give him a small dose of morphine, just in case he’s not comfortable.

            My mother called the doctor, and he backed me up. He told her it was the humane thing to do. My mother and I both cried. I took his chin, tipped back his head, and put the drops in. I felt him swallow, the swallow reflex. I’d done this a million times with other patients. We both took turns holding my father’s hand and telling him we loved him.

            I always knew my father’s gift to me wasn’t that he played catch with me or took me camping. My father could barely climb stairs by the time he was in his late 40s. Instead it was my father’s gift that he believed in saving as much as investing. He believed in living within one’s means. He believed in reading to find out what you need to know.

            I was watching college football when my father slipped out. It was a morning game. My father died just like a thousand other people I’d seen or heard about. He took a few gasps of air, then his color changed and it was all over. This one was different.

            You don’t become a deep thinker because you’re a hospice nurse, because you’ve seen so many deaths. It’s the death of one of your parents that brings home the reality of the cycle of life. It happens to everyone. It makes you realize, truly and fully, that you are on the ride through life as well.

            My mother and I, in the coming days, felt a sense of relief. We could both see it in the other. We picked out Dad’s favorite suit to bury him in. People came by with food. The church hall was prepared for a dinner after the service. All the friends and family came together to help us celebrate his life.

            After a few days, I went to Denver and began to look for a hospital job. The pay was better at the hospital, and I thought I’d try living in the city, build another house.

When I was a boy in Nebraska, in the days before a person could fact-check on Google, a story was told about Geronimo, who is pictured in a car in 1904 wearing a full headdress. The picture was hung in a general store in Lake City, and it was dusty even when I was a child. The story was he went off a steep drop-off in the car, and trying to stop the wild ride, he emptied his revolver of six bullets into the engine like he was trying to stop a horse. The accident killed him. I heard the story over and over, but it wasn’t true.

There is a legend he was once being chased and took a horse down a steep slope and the soldiers who were chasing him were unable to follow. People at the municipal swimming pool in Lake City used to shout Geronimo when diving off the high diving board. I learned later paratroopers used to shout Geronimo when diving out of airplanes. He was a member of the Apache tribe.

The point is, I liked the analogy of shooting one’s car. In those days when I was a traveling nurse, I’d imagine that all I’d have to do to end the sorrow, to relieve the stress, was to kill my car. Kill your car and all your problems will go away.