Chapter 13
Shawna was using the pitching wedge pretty well. She could hit the greens from 60 or 70 yards out. Then, when she could read the greens, she had good luck with her putting. She could earn some good, low scores. Of course, the problem with golf is that when one plays a lot, and can hit some shots, one thinks he or she is good. But inconsistency is golf ’s dragon lady. As soon as you gain some consistency, you’ll begin to hit errant shots at just the wrong moment. It can be a frustrating game, even on our level.
Shawna had a good sense of humor. She liked it when I praised her for a good shot, but she also laughed with me once when she hit the ball into the parking lot. I was having fun with Shawna although our time together was limited. We both worked a lot of hours, but she liked being outside and the three-par golf course, called The Fountains, was a good place to waste a sunny, early evening. Shawna preferred her condo to my house, which was always under construction, and she was comfortable with the restaurant Park Place for its good, simple food. Park Place always had fresh salads, small courses of food, designed to cater to women, and good drinks made from fresh ingredients.
Shawna’s world, except for work, was all within walking distance. The condos looked out over the nine-hole golf course, the mountain Pikes Peak in the background. Park Place was next door to the condos. A fountain near the street advertised to the public the three-par course.
Shawna had a family of her own, friends, and patients, but for some reason she always liked to hear about my case load. I always gave her a diagnosis and a story. I told her about Red Rhodes, who had a buddha-like stomach. His wife was large and his two daughters were large.
I said it was a normal case. He had some cancer pain, some other problems, but we addressed them. The family did a good job taking care of him. He died and since I’d worked with them a while, I went to the funeral. The church was packed. The family put together a slide show, and in every picture Red Rhodes was smiling. It was a great collection of pictures. I didn’t know how they pulled it off.
He was happy and fat in his sailor’s uniform. He was happy in Hawaii on vacation. He was happy at his little farm in the mountains. He was happy at his girls’ softball games. He worked installing and repairing air conditioning and heating units, and was even happy working on an air conditioner. He had his uniform on, a rotund stomach, but also a big smile.
I told Shawna I had underestimated Red Rhodes. There was more to his life than I had thought. He saw the world, had some good vacations, made a few bucks and raised his girls. It was no wonder people liked him. He was always happy. Even if it was an act, it worked. Based on the pictures, the slide show, I could hardly imagine him angry or having a bad day.
Shawna ruminated about the on-off switches regulated by hormones. She was trying to keep the relationships clear in her mind but never told me why. We talked about performance enhancing drugs, anabolic steroids and erythropoietin, EPO. Bicycle riders use EPO to load their blood with red blood cells, which carry oxygen and thus improve performance. I joked about hypohemia, a word I got from the Simpson’s television show. It means “low blood” in Greek. It’s also useful in medicine to know Latin. Mr. Burns of the Simpson’s needed the blood of a young boy to reinvigorate himself.
I said “hypohemia,” and we laughed, but I didn’t tell her the origin of the word. Somehow the direction of the conversation got changed.
It turns out Shawna had some musical training and we talked about that, but we got back to Red Rhodes. Shawna worked with overweight people and was interested in how he accepted his body and had fun rather than being miserable because he wasn’t thin. Was happiness genetic or environmental? Should we trade short-term satisfaction for long-term goals or live in the moment. There is excitement in playing Tchaikovsky in a concert band, the vibrations from all the instruments making one feel alive.
And during all this talk, talk, talk we made love. Shawna had nice breasts and muscular hips and large calves, just a strong body and a great brain and I did not know why I hadn’t asked her to marry me. But I hadn’t and I wasn’t going to. I remember it was 2 in the morning and she lay her head on my shoulder. In truth, we were a little drunk. We could sleep well into Sunday morning.
“I have a confession to make,” I said. “I may have given you the impression I made up the word hypohemia, but it’s from an episode of the Simpson’s.”
“Silly boy,” she said, “no more jokes. You can tell me later.”
She barely got the last five words out. She was right next to me and I could touch her body and feel her warmth. I was satisfied and happy. Someone should take a picture of us in our lives when we are happy.
One other thing. Red Rhodes was 50 when he died.
Chapter 14
It was about this time I found the resource I was looking for. I heard a radio interview with Sherwin Nuland and bought his book, “How We Die.” It may not sound like a great read, but it was the perfect resource for a new hospice nurse. Dr. Nuland talked about all the things that could go wrong at the end of life, all the mechanisms of death. It’s a technical book, not easy reading, but I realized I’d already seen many of the things mentioned in the book. I read the book twice in one week.
One of the first patients I had at hospice was Bob Eckers. He was 78, his muscles wasted away. He had a barrel chest and skinny arms. He had a scared look; I had the feeling he was one short flight of stairs away from dropping dead due to a lack of oxygen in the lungs. In addition to his wide-open eyes – part of the scared look – he wore a Breathe Right strip over the bridge of his nose. “NFL football players wear them,” he said as if he had to justify it. He had lung cancer and nothing we did made him comfortable.
In my mind, he was a war hero, having landed in Normandy during World War II and marched through Europe to Germany. There were cigarettes in the food-ration boxes they carried. Still, I don’t know if anything justifies a lifetime of smoking and the misery it will cause. His wife was healthy, a non-smoker and very nice, and took care of him without complaint.
One Monday night, when I was on-call, his wife called and said he was spewing out buckets of blood. Another buckets-of-blood reference. I knew what she meant and didn’t tell her there were probably only five pints of blood in Bob’s scrawny body.
It was 2 a.m. and I said I would be there in 10 minutes. I put on my jeans, grabbed the bag with my equipment and headed for the pickup. When I got to his home, he was dead. I helped his wife clean up the mess. It took considerable time. He had vomited the blood as neatly as he could in the toilet and shower so it could’ve been worse. Still, it was gross and took two hours to clean up. There was a smell stamped on my memory for weeks. I then called the medical examiner and the funeral home. I waited with his wife until the funeral home people arrived.
I went back and re-read Bob Eckers’ history. We had a file room, and I could find any patient’s medical history easily. His tumor was on the aortic artery. I knew what had occurred, thanks to Dr. Nuland’s book. The tumor had eroded the artery, it broke open, all the blood poured out through his mouth and he died of hypovolemic – low volume of blood – shock. He had an actual case of hypohemia. Not enough blood.
Lucille Hollis, a nurse in her 30s, is our best nurse at the Colorado Springs hospice. She shared my excitement at finding this new resource. “The book explains so much,” she said.
I took the book to Dr. Wohlfahrt, and he asked to borrow my copy, which I loaned him. He told me later the book was good, but he found an error. “There’s no way a resident, a new doctor, would be allowed to slice open a chest and perform cardiac massage on a patient with ventricular fibrillation.” This dramatic scene opened the book.
I laughed. “They made up something to sell a book?”
Dr. Wohlfahrt nodded, then smiled. “Yes,” he said in a sarcastic tone, “I’m shocked.” He was an easy person to joke with.
Shortly after my debacle with Ruth Derby, Lucille had a younger woman, age 54, with breast cancer and she was dying a miserable death. The doctor gave the patient phenobarbital, at the patient’s request, and with the morphine this put the patient into a kind of deep sleep. Lucille saw this as a merciful thing to do. Of all the nurses at the Colorado Springs hospice, she was the one who tried the hardest to think of things that would’ve helped Ruth Derby.
Lucille also listened to every detail of my story about the man who turned from pale white to jaundiced yellow and then died. She made me stay late after work one day and tell her everything that had happened with Jim Cousy, who died of uremic poisoning. Lucille was interested in doing things right, and she wanted to know everything about hospice.
Some time after Jim Cousy died, I read “Snowbound,” by Ladd Hamilton. It was about a hunting party lost in Idaho’s Bitterroot Mountains in 1893. A man in that party, the cook, had used catheters to urinate for 20 years. He boiled them to sterilize them, and reused them. The cook grew tired of it and went into the woods with the hunting party but without the catheters. In reality, he was committing suicide, wasn’t he? The details of his death were slightly different from Jim Cousy’s, more like renal failure, but the circumstances were similar so I was surprised by this. In medicine, one never figures out everything.
I had a patient who quit dialysis, and several who stopped eating, so I knew suicide was on the minds of some people.
Lucille and I were the two young nurses at the hospice. Some of the older nurses scared me. Dorothy Brown and her husband hadn’t put away much money for retirement so she was working into her 70s. Let me tell you, she hasn’t learned anything new in 20 years. Dorothy Brown’s idea of pain control is to slap on a Duragesic patch, which has as its active ingredient the opiate Fentanyl.
Now, a Duragesic patch, commonly called the pain patch, was a new, good idea at the time. I once had a patient who made sure his was securely in place by covering it with a piece of duct tape. Imagine my surprise when I met him at the admit and asked what he was doing about pain. He opened his shirt and showed me a piece of duct tape. The patch was underneath, he added.
The patch is one of those simple ideas that work so well on an intuitive level. Just because a concept is easy to grasp, however, doesn’t make it a better idea. We have nurses who, at the first complaint of swallowing difficulty, slap on a patch.
There are numerous problems with the patch. They are difficult to titrate to the right level of pain medication because it takes 18 hours to reach full effect. With MS Contin or OxyContin, and morphine drops, you can find the level of pain medication that works within a day or two. With the patch, it can take a week or more to figure out the correct dose.
Some people have so much weight loss there isn’t any fat under the skin so the medication does not absorb well. And, someone with a fever will burn through a patch. Cancer patients often have night sweats.
I always call it the “magical patch” because nurses like Dorothy Brown just want to put it on and magically have the pain problem solved. In my opinion, it’s not always that easy. I’ve seen doctors buy into the magic-patch scenario as well, even sticking them on people who have never taken an opiate pain medication.
When you put a patch on a person who has never taken an opiate pain medication, they get sick as a dog. I saw it three times when I was on-call. One tiny patch floats like a butterfly, stings like a bee, to quote Muhammad Ali. The smallest dose of the early patches was 25 micrograms, a very strong dose.
Betty Roth is a veteran nurse, with more than 60 years of experience. She’s still active in body and mind. She plays golf and considers new ideas. At times she’ll forget details, which is not good for a nurse, but she could help you. She’s smart and has a good perspective.
Part of the job is saying the right thing at the right time, and this is something I got better at as I went along thanks to Betty Roth’s example. At first, I thought we could keep everyone comfortable. I thought people went through stages of dying just like Elizabeth Kubler Ross said. It turns out, Kubler Ross is full of it. People don’t start out in denial, advance to anger and finally end in acceptance. I’ve seen people in denial until the last day of life. I’ve seen people in acceptance from the very start.
Not all people resolve the issues in their lives, even with some guidance and a warning that there is no time like the present. Some people’s lives are messy all the way through and they don’t suddenly tie up loose ends at the last.
I learned from Betty Roth. If people were in denial, she didn’t really try to break that down. If someone wanted to be miserable because they didn’t want to take their medications, she didn’t force the issue.
I paid attention and remembered an episode when I felt there was a payoff. There was an Italian man, Anthony Morello, who had cancer and hated the idea. He had pain but refused to take pain pills. “I take garlic pills,” he said.
The third time I visited, and he complained of pain, I asked him if he’d taken his pain medication. No, he said. I asked him to rate his pain and he said 8 on a 1-10 scale. “Wow, that’s a lot of pain. What did you do?”
He said he took his garlic pills.
“A half an hour after you took the garlic pills, how would you rate the pain?”
He smiled and said 8. After that, he began taking his pain pills.
One day, when he was free of pain, we had a good conversation. He showed me pictures of himself and his young wife (he was young too) as they drove around Europe in a sports car. He showed me houses he had built in Colorado Springs. For a brief time, I got to see the charming, enthusiastic-for-life Tony Morello. Some days the hospice job was a gift.
The aforementioned Charlene Williams, RN, likes paperwork. Nothing makes her happier than sitting in the office filling out forms while all the other nurses are gossiping. I’m not kidding when I say there are nurses like this.
She works in the nursing homes with a fun nurse named Maggie McGill. Charlene sits in the office and fills out forms, sometimes doing Maggie’s charting. Maggie goes out and chats it up with the nursing home nurses and patients. I don’t know if this is good nursing. Lucille Hollis told me it’s good hospice nursing.
Of all the nurses, Dorothy Brown is the one who scares me. She’s advanced from morphine suppositories and hugs to Duragesic patches and hugs. I never see eye to eye with Charlene Williams. She points out all those forms we have are for a purpose. She updates plans of care every day, addressing the most trivial problems. Other nurses have to pick up after Betty Roth when she forgets things. Mostly I was annoyed with Mattie Green, the social worker, and Roberta Edwards, the charge nurse. Roberta and Charlene were peas in a pod. They both liked to sit in the office and write the same things over and over. The idea we would someday be computerized scared them.
Roberta Edward’s style was to be nice to everyone. But, let’s say one day Lucille Hollis had five very sick patients to see, and maybe Dorothy Brown had two easy patients. I would’ve given Dorothy one of Lucille’s patients. They both would’ve had a little closer to a normal day.
Instead, Lucille would work nonstop from 8:30 in the morning until 6 or 7 in the evening, while Dorothy would see two patients, do a little paperwork, and knock off at noon.
Roberta Edwards was always asking me to call people. I was out in the field with a pager and a cell phone with a questionable range, while she was in the office with a phone sitting on her desk. Roberta asking me to telephone everyone and Mattie Green giving out phone numbers instead of helping.
I worked hard in those years. I put in a lot of time on-call, and I spent time with patients. The more I saw, the more confidence I gained. I don’t suppose you can go anywhere and find perfect management, and mostly our hospice rated well in family satisfaction.
At home, I hired a plumber and an electrician, and later hired another man to put up the sheetrock. The place was looking like a house.
I worked at this time with a hemophiliac named John Turner. Hemophiliacs are missing a blood clotting factor, and as a child John always lived with the fear he’d bleed to death if he got bumped too hard. A bruise could kill him, cause him to bleed to death, thus he couldn’t run and play with the abandon of other children. Sometimes his joints would lock up, and his mother would have to “break” them open. It was painful, and his father couldn’t handle it and disappeared. It used to be hard to live in this world.
There were thousands of cases like John’s in the United States. In the late 1970s, they began to give these children clotting factor made from blood products. They were mostly children because hemophiliacs usually die at a young age. I’ve seen the clotting factor. It came in two little bottles. You’d draw solution from one bottle with a syringe, put it in another bottle of powder and shake it up. Then you’d draw it out with a filter needle, a liquid now, and give it intravenously. John showed me how he did it. When he felt his joints locking up, he would give himself the clotting factor.
John was about 10 years older than me. He’d been working with medical people throughout his life. He knew I was new to hospice care and at times he didn’t know if I was up to the job of caring for him. I accepted the fact he had concerns about me. We talked about it.
When clotting factor was first given to these people with hemophilia, many thought it was the most wonderful thing that had ever happened. John remembers feeling normal for the first time. He would go on hikes through the woods. He smoked a little pot. He met his wife and they went out on dates, the trauma of his youth something that maybe he could keep in the past. He made friends, went to rock concerts, held a job, a glorious job, at a grocery store.
Then, like many other hemophiliacs, he was tested in the 1980s for the virus that causes AIDS. He was positive. The blood products that had changed his life were tainted, and his life took another turn. His wife and young “miracle” children were not HIV positive. His wife tested negative, yes, but I’d bet a Ben Franklin – $100 – John Turner and his wife were having unprotected sex, even at the end of his life, when I knew them.
Most of the time, when I visited, things would go OK. John had two children, and it was a fun, busy household. They had money problems. John was too weak to work and sometimes to even do child care, which he hated because he loved to spend time with his children. He wasn’t strong enough to run after his young son if he made a break for it. The car his wife took to work was always breaking down. Financial things were always a problem, but John’s wife loved him, and he loved her. The children were always well managed when his wife was around and John loved the interactions.
Even in those days, before protease inhibitors, I remember John had a long list of medications. I read everything I could about AIDS and as a result thought up all kinds of worst-case scenarios.
There was candidiasis of the esophagus. OK I could request an antifungal. Kaposi’s sarcoma, well, that was cancer. The patient gets dark, black-purple spots under the skin to start. Diarrhea, bacterial and mycobacterial infections, neurological abnormalities. OK, I wasn’t overwhelmed yet.
Retinitis. Complaints of visual changes must be evaluated immediately. Ding, ding, ding. A retinal virus could be rapidly progressive. A similar symptom, some kind of white spots in the eyes, were common in all HIV-positive patients. I had never seen either and couldn’t find any pictures in my medical texts or on the internet. Not in those days. Then I read this sentence: This distinction may be difficult at times for the nonspecialist, and patients with visual changes should be seen by an ophthalmologist.
Thinking of John going quickly blind because I didn’t recognize a change in his eyes seemed like too much responsibility. For a day, the words “rapidly progressive” echoed in my mind. I was freaked out thinking about it. I told John I was worried about the many complications we faced.
John suggested I make a few doctor’s visits with him, and the primary doctor, a well-known specialist in Colorado Springs, told me things to watch out for. It was helpful. I went to an eye appointment with him, and the doctor used an optical device to look into his retinae. I could see all the structures, inside his eyes, that I’d seen in my anatomy book. But they were alive. I thought it was beautiful, like outer space is beautiful.
Both doctors told me if anything came up, they were available to help and this gave me confidence. I later had other AIDS patients. Then protease inhibitors came on the scene and AIDS was a chronic (continuing) disease, not a terminal one.
Later, during one 24-hour period, John displayed an amazing amount of erratic behavior. He took the car and ran off to see his mother, then returned home, crying like a baby. He requested a hospital bed, which I had delivered to the home immediately. He said he was stiffening up. Could I give him his clotting factor?
I went into his bedroom, pulled out the trunk with the medications, and mixed up a dose of clotting factor. I started an IV and gave him an infusion. I gave him an extra dose of pain medication.
I can still remember him lying in bed. We both knew it was near the end for him. “I wasn’t sure, when we first met, if you were up to the task,” he said. “You’ve done great. Thanks.”
In those days, after the Ruth Derby debacle, I maybe needed positive reinforcement. Nowadays, it doesn’t matter if someone says thank you. I know I’ve done as well by a person as I could.
John went into a coma, which lasted three days. His wife and I were generous with the pain medications and we changed his position often, provided oral care and kept him clean. There was no reason for John to suffer. Then he slipped out with pneumonia, my young friend dying of the old man’s disease.
Yes, I called him a friend. I know that’s not professional. I’m supposed to remain objective, but he was my friend.
At about the same time, Leanne began going out with other policemen on the night shift to drink a beer or two after work. One night she was going to join me at my house after the midnight shift ended. She came in about 3 a.m., drunk and in a good mood. The cops were fun to drink with, she explained, while she looked in my refrigerator for food. I forced myself awake and fixed her breakfast. I had a sinking feeling the relationship was coming to a close. She was an attractive young woman, and she was working with young men, and I wasn’t paying much attention to her. I was busy at work, and painted the outside of the house on a two-week vacation. There wasn’t any anger or confrontation. I was a little sad. I suppose, looking at it from the outside, one could say I deserved it.
In those days, so many things occurred that I was just beginning to understand. People were always trying to fix themselves with nutrition. I understand now this is an age-old belief. There is evidence that a thousand years ago, when people were sick, they prayed and hoped they could cure themselves with a vegetarian diet. Now, they take vitamins, too. I’ve destroyed thousands of dollars’ worth of vitamins in the course of destroying people’s other meds after death, which is required by law.
Now, a brief lesson in cell biology explains cancer is a mass of rapidly growing, abnormal cells. There is nothing to suggest that additional nutrition will stop the growth, but people continue to try it.
I remember once reading about a successful football coach who had been told unresolved anger caused his cancer. He was, during treatment, boldly not mad at anyone. A naturopathic doctor gave him hydrogen peroxide IVs. Now, this is a myth debunked by the smallest amount of science. Hydrogen peroxide is H2O2. You open the bottle and the extra oxygen molecules escape into the atmosphere (the hydrogen peroxide boils, but is not hot) and the solution becomes H2O. Simple water. People put it on wounds, too.
Putting H2O2 into your veins will not deliver one additional oxygen molecule to the tissues of your body. The body takes in oxygen through the lungs. Arteries carry it to the tissue. Anything you put in the venous system goes back to the liver to be detoxified.
Chapter 15
My father said he didn’t like Colorado. The air was too thin for his lungs, he said. The one time he was there, I was working in the ICU as a student nurse at the University of Colorado, managing those impressive-looking machines, respirators, that glow and beep in the night. It looks like a really important job. My father was lukewarm on hospice. He said, “I hear good things about hospice, but I’d be more impressed if your patients got well.”
It was a warm, fall day on my third year of working for the Colorado Springs hospice. I kept a 9 iron in my trunk and I stopped sometimes at the range and hit a bucket of balls. I lamented the fact the season was almost over, and was sad my father was in poor health.
I tried to enjoy the nice day. I was taking a 15-minute break from work. I remembered there were polyester pants with lots of pockets at Leanne’s house. She had a belt with a place for a gun, ammunition, a radio, a baton, handcuffs. She was beautiful and it would be crazy to break up with her, but I was aware 90 percent of the Jar Heads she works with would like to sleep with her.
In Colorado Springs, the police seem to be in the middle of much controversy. A mentally ill man was recently shot dead, the second in six months. There was some kind of scandal where police officers were getting unearned overtime from a federal grant program. The department’s attitude seemed to be use it or lose it.
Leanne argues it is the ability to think, rather than force, that makes a policeman valuable. Once, following a bar fight, Leanne saw a female office who took a drunk who was fighting, grabbed him by the shirt and said, “Tell me what’s wrong?” The drunk didn’t need a show of force. A little female sympathy diffused the situation and ended the drinking and fighting for the night. Situation handled. I agree with Leanne it’s important to have women on a police force.
For a while, Leanne worked traffic. She gave tickets to speeders and nabbed people who pushed through yellow lights. She justified it. “Criminals drive too,” she said.
Now she works on a unit called neighborhood relations. Let’s say someone thinks there is a drug dealer nearby. The police will watch for a while. They’ll talk to the renters. “Why do 10 cars a day stop and nobody stays more than 10 minutes? You know, we’re writing down all the license numbers.” Then they might talk to the landlord. “You know, we could write a ticket for that old car in the alley that’s been there for six months.”
“It’s not exciting stuff, but it works to clean up the neighborhoods,” Leanne said. “I like it.” I was glad of that. I hadn’t been treating Leanne right, but I did wish her well.
Another morning, Leanne grabbed me, smothering me with kisses. It was nice but I had to go to work. “What was that about?” I said.
She embraced me again, gave me a hard kiss. “Something happened yesterday at work. I realized this guy I was working with was a bit of a knucklehead. Not that I can’t work with him, just that I like my nurse. He has common sense, he’s fit and he’s fun. Be sure and tell me if there’s anything I could do to make this a better relationship?”
“Ok,” I said. “I love it when you grab me and kiss me. This guy hit on you, huh?” She smiled. “Yeah, but it just made me realize what I have. I love you.”
I kissed her. “I love you,” I said. Leanne was raising the stakes.
Only a car connects me to my patients, the hospice office, my home construction job, Leanne and Shawna. I wished Lucille Hollis could work with me nursing, but that wasn’t realistic. I wish I could talk to my friend Mike about my father, and my relationships, but he was on the West Slope preparing to manage the ski patrol. My car is mobile. Well, that’s me, alone with my thoughts.
I had a patient from mainland China. He was an engineer there until the communists took over. He escaped, met a younger woman from Hong Kong, and took her to the United States. He took a job washing dishes at a Chinese restaurant. Maybe he wasn’t even a U.S. citizen.
He was old, a smoker, and had lung cancer. I liked his wife, Kathy. She interpreted, but I always had the feeling Mr. Honan understood everything I was saying. I controlled his pain with opiates and nausea with prednisone. It took only small doses. He was never really happy and I didn’t blame him. It was an old song. You can relieve pain but that doesn’t mean the patient feels good, has any energy.
I filled a med box for Kathy. I ordered oxygen and a hospital bed. I stopped by at times to make sure everything was OK. Kathy was unsure of herself, but then many people are. The end-of-life care they provide, they want it to be right.
He had started to have falls, and Kathy asked him to stay in bed. She was afraid he would fall and break a bone. He did as she asked, but he began spitting on the floor. They were living in an old apartment building, but it was clean. So why was he spitting on the nice hardwood floors?
I asked Kathy what this was about, and she said she didn’t know. He was from the country, and she was from the city, so maybe that was it, she said. She put down cardboard on half the bedroom floor, and asked him to spit there.
Later, I read Paul Theroux’s book, “Riding the Iron Rooster,” which was about his travels through China. He said everyone spits. It’s a cultural thing. Then, I read the government was trying to discourage spitting. The Olympics were scheduled in 2008 and the government wanted to put its best foot forward.
I had a screamer. None of the other nurses would take her. She started out as Dorothy Brown’s patient. The bath aid wouldn’t go to the home. So I took the patient, asked to be the case manager, and told the bath aid I would make visits with her. We kept her clean and put lotion on her legs, which probably because of neglect started out quite scaly. After a while, they looked pretty good. I don’t believe she had any pain. The daughter was happy. The patient never stopped screaming. Until she died.
My opinion is, some cases are just meant to be hard. Not everyone can be happy. But, I felt that’s what our nurses wanted. No hard cases, no ugly facial cancers, no dysfunctional families, no unexplained screaming.
I had a patient at this time with lung cancer, which had metastasized to the brain. She slept with one eye open and one eye closed. When she was sleeping, you could wave your hand in front of the open eye and there was no response. Spooky like Halloween.
I had three patients in a row with glioblastoma. The odds against one hospice nurse getting three such rare cases of brain cancer are astronomical. There were two men, one woman, all with a history of high blood pressure. All three cases went OK, but it was sad for the families to see someone they loved die so young. Glioblastoma is a cancer without a cure. All were in their early 50s.
One day I visited a patient and his O2 saturation was 50 percent. A teenager’s would be 99 percent. “Yikes,” I said to the family. I’d never heard of this in nursing school. It’s possible the pulse oximeter was not working correctly. He died 12 hours later.
I got a funny call late one Friday afternoon. I was in the office, just finishing up all my paperwork. The other nurses were long gone, and it was about an hour before the on-call nurse would come on duty. A family member called saying the patient had died on the toilet. The charge nurse asked me to go help them out; I wasn’t the case manager.
The patient appeared to be dead. When I went to get her off the toilet and back into bed, she said, “Ouch, be careful how you lift me.” I thought some of the family members would have a heart attack. Then there was great laughter. The woman died later that night, in bed.
It’s not easy living on the road. The tall pickup ahead of me has a vanity plate that says “Above U.” It spews diesel fumes. An old woman gets in front of me; she can’t be four-feet-tall and she slows me down. Her bumper sticker says, “Old age ain’t for sissies.” Well, that’s for sure. Next, I’m by an angry youth smoking a cigarette. The sticker in his back window, written in script, said, “Your college sucks.” I think of not having a car and being in Hawaii.
I thought Dorothy Brown was incompetent, and Roberta Edwards, too. Mattie Green only gave out telephone numbers. Yet I worked at an agency that was concerned with doing the right thing. In the end, all decisions were based on making the patient comfortable.
I was new to two relationships. Both were in that upward curve where you laugh at silly jokes and forgive shortcomings.
I tried to compose a completely objective picture of Leanne. She was a high school soccer, basketball and track star, always on the TV news. She was on all-state teams. She was a basketball star at Colorado State University. She must’ve struggled with life as an ordinary person, as a waitress. Now maybe the police department would offer her excitement or satisfaction. As a woman, she had always had boyfriends. She liked men.
In this same way, I tried to be objective about Shawna. She was raised by two teachers with a modest, middle-class lifestyle. As a doctor, she felt she deserved nice things. Maybe that’s why she kept buying clothes.
Her quirk. When she needed a date, she expected me to be immediately available. She was authoritative, a trait she has in common with other doctors. She was an aristocrat who had yet to earn her money.
Shawna was picky about food and liked to eat well. She would taste everything in the fruit and vegetable section of the grocery store and end up with tasty avocados and strawberries.
It was not the car, or the job or the relationships that kept me awake at night. It was my father, once a three-pack-a-day man. Now he can’t climb the stairs. Other family members are there for him. I was making a conscious effort to stay away.
I saw other cases where family members ran away. In nearly every family of some size, there is an adult child who steps up and does the right thing for the mother or the father, and there is another who disappears. The excuse is always some variation of this theme: I want to remember mother for who she was.
I once worked with a man, Bob McDonough, who was dying of prostate cancer. He lived with his girlfriend of 10 years. Like Bob, Donna was in her 70s. She needed hip replacement surgery. Bob had a huge gut and was losing his ability to walk. He basically wanted to sit in the same position all the time, letting the drugs control the pain and put him to sleep.
However, about six times a day he needed to get up to the bedside commode. I could help him with this, and so could the bath aid, but we were there only a couple of times a week. I know some hospices are strict about the two-times-a-week standard, but our hospice allowed me to visit every day if I had the time. I’d write down the hours, and the Colorado Springs hospice would pay me.
Even a visit a day, though, is not enough coverage for a person who needs round-the-clock nursing care. Bob McDonough’s son, also named Bob, helped at times. Bob Junior was gay, and he had three big dogs. Bob Junior wanted to move his father into his own home, but Big Bob didn’t want to go. He didn’t want to live in a house with a gay couple, and he used as an excuse the panting, shedding dogs.
There was constant tension at Bob McDonough’s house. Donna was nice, but she couldn’t lift Bob. Bob Junior wanted to run the show, but his father wasn’t letting him. Despite all my warnings about the need to continually change his position in the chair, Bob began to get skin breakdown on his coccyx. A so-called bed sore. I put a dressing on the area to appease the family. I told Big Bob and his son the truth about skin breakdown.
I said there is no magical dressing or lotion we can put on a wound to heal it up. Not honey, hydrogen peroxide, Bag Balm, witch hazel, antibiotic creams, hydrocolloid gel, donut cushions, gels cushions, Styrofoam cushions. Not even the mineral water poured out of a jug by the papier-mache Indian at the tourist store in Colorado Springs. You have to stay off the tailbone, I said. The very basics of nursing, an old-fashion notion that is true to this day, is that you must continually move a person in bed. Adjust them, using pillows, from the left side to the right side and back again, every hour or two day and night.
Bob Junior was angry at me for saying this. He questioned how much experience I had with skin care. Big Bob indicated he was not going to help; he didn’t like being on his side and in fact remained in his chair day and night. Donna looked hurt and sympathetic to my cause.
Let me assure you, there was nothing mean in my delivery on skin care. I was simply telling them the truth. As I’m sure all hospice nurses will agree, sometimes a person knows he’s right but you don’t necessarily want to be. You wish you could put on a magic dressing and the wound would heal.
In a couple of weeks, the wound had grown to roughly six inches by six inches. It caused pain when he was on the sore. It looked terrible and was so deep a horrific odor was emanating from it. I had been successful in getting Bob McDonough’s pain under control, and with finding a sleeping medication that worked, so he had some confidence in me although he hated that I knew the family secrets.
Bob McDonough was an outdoorsman, a fisherman and a hunter, a truck driver. He did not like being told he could not stay in the same position all day in a chair and he did not like having a gay son.
I told Bob it was time to consider going to a nursing home, where there would be people to help him stand and who could change his position in bed. I suggested he go because he loves Donna and it was breaking her heart to see him suffer. I said he should consider going because he should enjoy his last days with his son instead of fighting over accommodations.
Bob told me he had $10,000. If he went to a nursing home, he’d have to spend it. He wanted to leave it to his son. He said he hadn’t been a very good father, and he wanted to do one last, good thing for his son.
I could hear the nurse Lucille Hollis in my mind. This is what she tells people: You saved for a rainy day. Now, I’m telling you, it’s raining, it’s raining, it’s pouring down rain.
I’ve heard this a hundred times. A person works hard all his or her life, saving and investing money, and at the end of life he or she can’t stand the idea of spending the money on in-home nursing care or at a nursing home. No matter the circumstances nor the amount of money. Naturally people think the government should just pay it. Never mind it would cost billions.
Big Bob admitted it was not going well, and now there was one more indignity he didn’t like. I felt I saw a broken man, but this was not in fact my fault. People are going to view things however they like. I can only lay out the options for them.
Later that day, Bob Junior called the charge nurse Roberta Edwards and had me dismissed from the case. Betty Roth took over. I have no idea what occurred in the discussions between Bob McDonough, his son and Donna. Betty Roth said the patient made the decision to stay at home. The patient died four days later. Betty Roth said the patient was not made comfortable, the sore got worse, and Bob and his son fought. I suppose Bob Junior got the $10,000 inheritance, but I think he should earn his own money.
Lucille Hollis asked me what I thought of the case.
“They were civilians,” I said. “They didn’t know what they were doing.”
Money came up at other times. A patient I liked had lung cancer and continued to smoke. Dr. Wohlfahrt didn’t like it that I could never tell him how much morphine the patient was taking. I filled a med box for him, but he changed his dose all the time.
His wife wanted me to shave him, but Mr. Olsen complained the razor dragging on his whiskers was too painful. He didn’t like the electric razor, either. So Dr. Wohlfahrt and the wife were not happy with me.
The patient had a modest home, kept nice by his wife, and a lot of toys. There were two small motorcycles (125 cc Hondas), two four by fours, two snowmobiles, a motor home, a hot tub. To make conversation, I mentioned that he seemed to like a variety of activities.
“What do you mean?” he said.
“I see a motor home and motorcycles and snowmobiles,” I said. “It looks like you had a lot of fun,” I said.
He smoked a cigarette and looked gloomy. He asked if there was anything I wanted to buy, at a discount. I smiled and said, well, that probably wasn’t a good idea.
Mr. Olsen said, “My one regret is I didn’t leave my wife very well fixed, financially you know, for the future.”
Another patient I had lived in a small cabin in the woods outside of Colorado Springs. His daughter and her boyfriend lived in a larger cabin on the same property. They were renters. The patient had been a house painter part of his life, and worked in a body shop later.
“I told my daughter she needs to buy a lottery ticket every week. It’s the only way a working man will ever get rich,” he said. I smiled. Never mind saving a little, and investing in the stock market or buying property.
Lucille Hollis was going on vacation, and asked me to take care of a patient, Mark Stowe. I could tell he was a favorite of hers. “He doesn’t have a caregiver, but he has a roommate, Tonto, his real name. Tonto is a good guy, but he won’t give medications, or change bandages or take him to the bathroom. They only eat junk food, donuts, hamburgers, pizza. He has a fistula and will need daily visits for a dressing change. Don’t put him in a nursing home.”
I laughed. “Who always tells families it’s raining?” I said.
“I can’t explain it,” she said. “Anyway, sorry to leave you in this situation.”
Fistula means pipe in Latin, an abnormal passageway, and it is a drain from one area of the body to another; they can occur in numerous places within the body and cause a lot of havoc. Mark Stowe’s was somewhere in his upper abdomen, made a hole to his skin and leaked a slightly bloody fluid to the outside. Thus, the dressing.
I met Mark and Tonto on a Monday and was offered a donut for breakfast. I would describe them as good guys, always watching sports and somewhat social.
There was a second fistula now on the other side of Mark’s upper abdomen. We went in Mark’s bedroom and I put a clean dressing on both. Mark was round as a barrel, with two skinny legs and two skinny arms.
There was a med box on a desk, and Mark had tried to fill it but spilled numerous pills. There was a dachshund on the floor, sniffing around. “I hope you didn’t swallow any pills,” I said. I filled the med box, then picked up the pills off the dirty floor, morphine and senna tablets, and tossed them in the toilet.
On Thursday, the patient had two more fistulas, and on Friday another two. Until Friday, he was still walking, eating, taking pills. When I left Friday he had six clean dressings, and I wrapped gauze all round his abdomen to held everything in place. Mark said he was going to rest in bed.
I looked at him and thought: So, this is how a lifetime of junk food plays out. But that may not be fair, perhaps he was just susceptible to fistulas. I don’t know.
The patient knew something was wrong and agreed to go to the nursing home on Monday. I didn’t bring it up, but I suppose it had been talked about. Mark Stowe said he knew it was time and that was good enough for me.
I called the on-call nurse and told her about the case, apologizing for a situation that could turn out to be a lot of work. But the patient slipped out during the night Friday. Tonto had not heard a call of pain, or calls for help of any kind, during the night.
I worried about the patient, but also the dachshund. I imagined it swallowing a 15-milligram MS Contin tablet. This would be a lot of morphine for a little dog and I imagined it sleeping for three or four days. Or dying. I also thought of this eight-pound dog swallowing a senna pill designed for a full-grown person and imagined the mess that could’ve made, not to mention the dog’s potential for suffering. I thanked the hospice gods for bailing me out on either scenario.
Shoot, I’d been lucky the entire damn week.