I lost my aunt Joyce (far right) in 2013. Today I want to share with you how she has shaped my life forever.
During her funeral anyone who wanted to speak was allowed a few minutes on the stage. What I shared that day, is what I will share with you in this article.
Aunt Joyce was my spiritual counselor. Any time I was having a crisis of faith or was faced with a big decision, I would go to her for advice. Her infectious smile gave me relief the moment I entered her presence. She would listen to what I was struggling with, and then she would give me advice that was always biblically based and always encouraging.
I never left her her presence without feeling encouraged. No mater the situation, she would find a way to encourage me. Even if she had to give me bad news, she made sure I felt a sense of purpose and the possibility of success in the months and years to come.
She always saw what I could become, and spoke that into my life. She was a master encourager.
I try to be like Aunt Joyce in everything I do. When coaching my staff, or when visiting with my patients and their caregivers. I never want someone to leave my presence without feeling encouraged and empowered. I want them to see what they can become, and I don’t want them to be overwhelmed by what they are not. This can’t be accomplished by just pointing out their mistakes or errors. This is accomplished by focusing on strengths and making those strengths the focus of the conversation. Everyone has hidden skills and abilities. EVERYONE!
A good leader (everyone is leading someone) will always try to discover the hidden skills and abilities in those around them.
How about you? How do you make sure you provide positivity and encouragement in every interaction you have with others? How do you make sure others feel more capable once you leave the room?
The power to do this is in your words. It is how you end every conversation. Do you end your conversations with encouragement and a sense of possibility? Does someone feel better or worse about themselves after interaction with you is over?
Be like Aunt Joyce. Spend your energy helping others see what they can become. The power of life and death are in the tongue. Speak life and possibility into everyone you ever meet.
I’m a big fan of boundaries for hospice nurses. I have written BLOG POSTS and recorded PODCAST EPISODES dedicated to the subject.
There are limits to a nurse’s ability to remain completely neutral when doing this work. We do this work because we think it is important. Anyone doing this for a year or more is doing it because we feel it is our calling.
I’m not sure there is another area of nursing that demands as much emotionally from nurses as working in hospice. We insert ourselves into the end of someone’s story. We provide education and support as aunts, uncles, sons, daughters, husbands and wives stand watch over their dying loved ones.
While we try so hard to not fall in love with our patients and their families, we still inevitably end up with a hand full of people we just connect with in a special way. There are many ways this can happen. Most often it is because they remind us of someone in our own lives. Maybe even someone we lost to death at one point. We connect in a deep way, and friendship blossoms. We can’t help it. We are human, and we were created to love other people.
Then there is this abrupt ending to the relationship for us. A patient we truly enjoyed spending time with dies over the weekend or during the night. For us, a deep relationship comes to a crashing end. Imagine being so close to someone that you have stopped even knocking on the door when you show up to visit? We became close friends without even trying. It was just the result of visiting them multiple times a week for what can sometimes be more than a year. Now they are completely yanked out of our lives and we didn’t even get to say goodbye. Sometimes we are able to reach out to the family following the death. Maybe we even stay connected for a while. Even then, eventually, that relationship comes to an end. It’s not on purpose, but life for everyone moves on.
Then we might meet a family member in the community somewhere. We may be in the line of a grocery store, or tying to find a new pair of shoes. We make eye contact and, after a second or two, one or both of us will recognize the other. Someone starts crying and asks the other how they are doing. It’s awkward and generally short lived to minimize the awkwardness. We part ways and, for me, I sit in my car and relive some of the memories. There is no doubt the family member I just met is REALLY living the memories. Sometimes, I can hear them telling the person they are with who I was, and what I mean to them. It’s a heavy moment.
So what do we do next? We go to work the next day and risk our hearts all over again for complete strangers.
This is what we do, and we love it. Sometimes we just love it a little to much, and it hurts. It hurts because our friends keep dying.
A former coworker messaged me recently to let me know she had taken her first clinical director position. She asked if I had any advice for her. I can get pretty wordy when asked these types of questions, so I decided to share my thoughts with……everyone!
I have been in hospice leadership since the fall of 2017 which is four-and-a-half years as of this writing. My first leadership position was as a clinical director. The official title was PCM or Patient Care Manager. I don’t look back on those 16 months with a lot of affection. I do feel I learned a lot. Much of the advice I plan to offer in this article is a direct result of my first two years in hospice leadership.
1. Don’t be afraid to make mistakes
You are going to mess up. Just accept it now. The fear of making a mistake can become detrimental to your success. Letting the fear of making mistakes control you will result in a toxic environment for your staff. When mistakes happen, those who fear them will look for an outlet. They will start to blame their own supervisors, or even worse, blame their staff.
When things go well, give credit to your staff. When things go poorly, look at yourself first. Mature leaders are always concerned with their own growth in the role. They are quick to examine themselves when things are not going well. They don’t look for excuses or blame others. They realize that leadership comes with a certain level of accountability, and they don’t take that responsibility for granted.
Leaders who never mess up are not adventurous enough. Be an authentic and adventurous leader. Your team will love you for it.
2. Establish boundaries early
Okay, this really got the best of me in my first couple of leadership positions. I wish I could say that I have mastered healthy boundaries. I have come to the conclusion that healthy boundaries are a continual challenge for all of us in hospice. When your job is literally about life and death, with death as the expected outcome, boundaries will always be a challenge. Especially if you operate with your heart first, as I tend to do.
The boundaries you will need to implement as a clinical director are more staff related than patient related. This isn’t to say that a clinical director doesn’t make patient visits anymore. If you work for a smaller hospice, then you will likely still make your share of patient visits. The boundaries I’m talking about revolve around how your clinical staff treat you.
I like to create a relaxed more casual environment. I love sarcastic humor. I like to make self-deprecating jokes to help the room relax. My issue was that I allowed my staff to create nick names for me that I felt eventually caused a certain level of disrespect. Eventually, my laid back style resulted in my staff treating me with a level of disrespect. My “nice guy” persona turned into more of a ”we can just run over him” type of environment.
Since then, I have learned where to draw my boundaries. I no longer tolerate being called ”Jimmy” by my staff. This has made a huge difference in my most recent position. My current boss knows all too well about my previous challenges with my lax environment. She won’t call me Jimmy. She might joke in private about it, and we will have a laugh over it, but she knows it won’t serve me well. She makes sure I get the respect I deserve. She’s the absolute best.
There are plenty other boundaries to have with your staff. I can’t list them all here. The first place to start is making sure you are given the appropriate amount of respect. You earned this role. It’s okay to stay confident.
3. Protect your staff
I am so proud of my current director. Just like so many other hospice providers across the country, we suffered some staffing problems in the last few weeks. Smartly, my administrator put a pause on admissions until we could hire the needed help. Many hospice providers will not do this. They will force leadership to get out into the field and take a caseload. This is a dangerous activity. When leadership is out in the field, there is no support for the staff. When the administrator and clinical director are out in the field, their work does not get done. There is no backup for administrators. When they don’t do their work, nobody does.
The other side of the coin is this: Patients who are currently on service deserve excellent care. This means that leadership must make sure patients get the visits they need. To do this, leadership will have to get out from behind the desk and make visits when situations dictate. If leadership is going to allow admits during a staffing crisis, they will need to get out into the field and make visits. Long days and nights come with the job sometimes. Don’t let your staff drown in visits because you are in leadership and somehow that means you don’t have to get out from behind your desk.
The best way to get respect from your team is to get out there in the field and deal with the same challenges they face every day. They will respect you for it.
4. Pursue excellence not perfection
This is not an easy concept to assimilate. When reading the headline, the first response is, ”of course, that makes perfect sense,” but the more you think about it, the harder it is to define the difference. We can quickly agree that excellence is a good thing, but how is it different than perfection?
To do this we need to examine our own imperfections. We have to realize that perfection is a place while excellence is an activity. Nobody will ever achieve perfection, but we can all be excellent. This means that we can strive every day to just be better than we were yesterday.
“Striving for excellence motivates you; striving for perfection is demoralizing.”
Harriet Braiker
As you settle into a new position as a clinical director, it will become real tempting to be critical of field staff. As the months progress, it’s easy to forget how busy the days can become in the field. It’s easy to forget about the phone calls. It’s easy to forget about the emotional drain field staff experience every day. The family anxiety. The infighting between family members, and how field staff can easily get drawn in. The rooms full of crying family members as they adjust to the idea that someone they love is nearing the end of their life.
When sitting behind a desk, it’s easy to just start focusing on what isn’t getting done. Nobody is going to end every day getting 100% of everything done. Be ready to eccept a little bit of imperfection. The days can get really long. Don’t expect perfection from yourself or those you are responsible for. Realize we are all imperfect. The goal is to make sure we are all just trying to get better every day. That is excellence, and we should all attempt to be excellent.
5. Be consistent
This may be the hardest thing of all. This requires we keep track of all our decisions to make sure we aren’t wishy-washy.
What does this mean? This means everyone gets the same amount of PTO. If someone needs to take a half day off, they have to use their PTO. We can’t just let them bail on half the caseload for the day and run a few errands because, ”They work hard and I really like them.” Sorry, we have PTO for a reason.
This means everyone is expected to follow the rules set forth by leadership. If your company requires all documentation be done within 24hrs that goes for everyone. Even the ones who like to snap at you when you hold them accountable.
I’ll be honest with you. I have the hardest time with this one. I generally don’t like confrontation. The more irritable someone is, the more tempted I am to let them get away with stuff. I just don’t want the fight, so I can tend to let people misbehave.
Don’t be the old James. Be the new James. Be consistent.
6. Don’t gossip
Gossip is death and destruction for any organization. I would encourage you to follow the advice Tom Hanks gives his team in Saving Private Ryan when they ask him about complaining. He explains that complaints go up the command chain and never down.
For clinical directors, this means you discuss your frustrations with your own superiors. You never share your frustrations with your clinical team. You need to show your whole team that you trust and believe in them. If you share your frustrations with other staff, you are sending them the message that you will also talk about them when they aren’t in the room.
You will also have a lot of private information about your staff. You will likely know private problems and health issues your staff are facing. It is your moral and legal obligation to keep it to yourself.
It can feel powerful to have lots of little secrets. It’s tempting to share those secrets. Don’t do it. Your staff deserve better, and it will just create problems you won’t be able to solve.
7. Support your superiors publicly
Passing on bad or unpleasant news to your staff is not fun. As clinical director this is going to happen. Someone in leadership is going to require you to implement something that you know your staff is not going to like. It is going to be real tempting to deliver the news and villainize your boss hoping it will lessen the heat your team will put back on you. This is a horrible plan. It will not help you take your team where you want them to go. Instead, take the following advice from Andy Stanley.
Public loyalty buys you private leverage. Criticize privately, praise publicly. Your boss and colleagues will respect you. Flip it and they’ll fire you or never trust you.
Andy Stanley
There is an important strategy to the quote above. The more you support your superiors publicly, the more influence you will have with them privately. If you are critical of your leadership to your staff, it will get back to your direct supervisor one way or the other. They will stop trusting you, and when you take ideas to them, they will wonder what your alterior motives are. They will wonder how you got to your conclusion. They may discount you out of hand because you might have gotten the idea while bashing them to your team.
Support your leaders publicly, and they will be more likely to listen to you in private.
Welcome to the middle. It’s not easy and it isn’t always very glamorous. Your goal is to have as much influence and trust with everyone as you possibly can. The only way to build a healthy organization is through these two concepts. Without building influence and trust, your office will be unsteady and full of turmoil. This is bad for you, bad for your staff and ultimately bad for your patients.
My dad has had a long year. He suffered a freak accident a few months ago that resulted in an 8 week hospitalization and rehab. After being home for a few weeks he went back with a bad infection. Only just this week has his home health finally ended. We very easily could have lost him.
A few weeks ago my dad asked me to go to a Royals baseball game with him. I loved the idea, but the week that he asked was one of the busiest I have had all year. I completely forgot about the request. The following weekend I watched as three families lost their fathers. As I looked at the report, I was reminded of the gravity of what I do every day. I provide care and comfort while sons and daughters lose their dads. I reached out to my dad, and we scheduled a ballgame.
We planned the night very simply. We decided to arrive right as the game was starting. We didn’t expect to have the stamina to make it through the whole game if we got there too early. We left his house at about 6:30pm. I wanted him to have door-to-door service so I picked him up in my new car. I kind of wanted to show off. He hadn’t ridden in it yet.
Just to show off, I floored it as we got onto I-70. We may have gone over the speed limit just a little. It set the tone for the whole night. The rule breaking was in full swing. We were not to be denied! I broke the speed limit as we merged into traffic in my Chrysler 300 with window tinting that just might not be legal. We got to the stadium safe and sound. I’m not crazy you know.
We arrived just as the national anthem was being sung. We stood at attention outside the gates with everyone else. We were blessed to get a parking spot nice and close as well. Upon entry we decided to sit somewhere different than the tickets we purchased. The first spot we picked was a little too loud for our liking, so we moved to a quieter spot.
Nobody questioned our spot. We had done it! We were actually sitting in seats we didn’t pay for. It was invigorating! For two men who are generally rule obsessed, this was a big deal! We enjoyed a night of baseball. We got to see Salvador Perez hit his 47th home run of the season. We jumped up with the rest of the crowd and demanded a curtain call. Salvy obliged his adoring fans!
My dad had a bag of peanuts. I was just thankful to have my dad.
When we got to the seventh inning, it was starting to thin out a little. In a stroke of genius we decided to move even closer. Go big or go home was our battle cry! We marched down even closer and found a great spot that appeared to be abandoned.
We sat down to enjoy our new seats. Within about two minutes an usher came by and noticed us.
“Do you have tickets for these seats?” She asked.
In a moment of absolute defiance I replied, “No ma’am.”
”Okay, well, you need to move back to the seats you paid for.” She replied with a smile on her face.
Without complaint we promptly got up and moved to the seats we were previously sitting in and hadn’t actually paid for. We had a chuckle together and finished the game. We stayed for every moment of action as we watched our team win.
It’s real easy to take for granted the things we have until we don’t have them anymore. It’s really easy to do this with family. We just kind of assume they will always be with us. We all know this isn’t true, but I think we forget to act on it at times. What I do for a living can be a very sobering reminder of the frailty of life. It felt good to spend an evening with my dad watching a game we both love.
We are already making plans to catch some Sporting KC Soccer this fall. Maybe we can even find a few rules to break there too.
The first time I met Melvin he was sitting at his dining rom table putting together a puzzle.
”Hi Melvin, my name is James.”
He didn’t look up at me or acknowledge my presence.
“He can’t hear you.” His wife explained.
I raised my voice significantly to announce myself. “Hi Melvin, my name is James. how are you doing?”
”James, he can’t hear anything.” She explained. “He’s totally deaf.”
She touched him on the shoulder, and he looked up at us. He smiled at me, and then he smiled at her. He reached up with his hand and caressed her face for a few seconds. He smiled at her, gave her a kiss on the opposite cheek from his hand, and then he returned to his puzzle.
Melvin didn’t start out his life as a deaf man. He just experienced comlete hearing loss as he aged. Over the 2-3 month period of time that I was his nurse, I never heard him say a single word. Every visit was the same. I would perform my assessment, and ask his wife all the questions. He was always engaged in some activity. He would look at me and just smile.
I learned a lot about Melvin from his wife. They had only been married a few years. She told me stories about his travels around the world. He had visited almost every continent. He had been in most of the major cities in Europe. According to his wife, he had even scaled Mount Everest. Most of this had happened before they ever got married. I don’t honestly remember what he actually did for a living. I think he was a college professor or something of the sort.
Most hospice patients end up on some type of symptom management medication as the end of life nears. Usually it’s more than one medication. We have medications for pain, shortness of air, anxiety, hallucinations, nausea and vomiting. Most patients end up on several medications at end of life. Most commonly they end up on something for pain and hallucinations. Melvin sticks out in my mind because he took almost no medications while he was dying.
I remember visiting one day, and he was lying in his hospital bed. His wife was sitting at the head of his bed holding his hand. He was looking up at her with his usual smile. He was cupping her cheek in his hand.
”How has he been acting?” I asked.
“He hasn’t eaten or drank anything since yesterday morning.” She said.
Sitting next to her I asked. ”He doesn’t appear to be in any distress to me. What do you think?”
She looked at him and looked at me.
”He’s never had any chronic pain issues, and he seems to understand what is happening.”
“What is happening?” I asked her.
”He’s dying, and I think he knows it.”
I visited them every day that week. Every visit was exactly the same. She would be sitting at the head of his bed, and he would be holding her face with his hand. He had the same simple smile on his face. Most visits I would see him pull her close and give her a soft kiss on the opposite cheek he was touching. There was never a sound from him. Not a moan, or a groan. No coughing or attempts to speak any words. Just a smile and a kiss.
I remember the day he died. I had received an email from our secretary, Kay. It was a simple email like all of her emails.
“Please call Joanne, she is pretty sure Melvin has passed.”
I replied “Okay” to her email like I always did. After calling Joanne, I drove over to their house. She let me in and lead me to the living room where he was lying. I put my stethascope on his chest and listed for a heartbeat. There was none. I looked at my watch and gave the time of death to her.
While we waited for the funeral home to get there, we talked about the last 24 hours.
“James, it was the strangest thing. Every couple hours he would wake up, look at me, smile, lift his head, give me a kiss on the cheek and lie back down. All night long it was the same. Every couple hours. Wake up. Smile. Kiss on the cheek. Lie back down. Right before I called your office, he did the exact same thing, but this final time, he stopped breathing after the kiss.”
I have never seen anything like it since that day. I have never had a patient who remained that lucid until their final breath. Most patients are unresponsive for days leading up to the end. Not Melvin. He was awake till almost the last minute.
Melvin had a lot of adventures over his lifetime. He had been everywhere, and he had seen everything. When he was close to the end, the only thing that mattered to him was Joanne. He couldn’t communicate with his voice, because he couldn’t hear. What he could do was communicate with his face and hands.
At the end of his life Melvin made sure Joanne knew exactly how he felt about her. A touch and a kiss was all she needed to understand.
I can’t reminisce about the Kansas City Royals winning the 2015 World Series without remembering Randy.
He was only about 10 years older than me. He was a tall strong looking man. He had severe respiratory disease, and he couldn’t walk 10 feet without becoming so short of air he had to sit down. Even during conversation he couldn’t complete full sentences without stopping half way to catch his breath. Our visits always took place at the dining room table. He had a pill box that I kept filled up for him.
The Kansas City Royals were making their second trip to the World Series. They had a heart-breaking loss to the San Francisco Giants. The name of the Giant’s pitcher who beat us is banned across the region. The mere mention of his name could cause a fist fight between the closest of friends.
Randy and I managed to watch most of the series with the Astros together. We would scream and yell at the screen in unison. When the Royals were down 6-2 in the bottom of the 7th in game 4, we were in the middle of a joint visit with the social worker. We turned the game off in frustration to resume our meeting. We knew the season was over.
About 10 minutes later I pulled out my phone and checked Twitter. I’m a socially challenged rule breaker like that. I was shocked to see that the royals had the bases loaded with no outs! I stood up and crashed the meeting. I looked at the social worker and said, “I’m really sorry to end the meeting so soon, but the Royals are in the middle of an epic comeback!” The social worker laughed out loud, and we turned the TV back on. Randy and I watched as the Royals performed one of the greatest comebacks in franchise playoff history! Ultimately, we celebrated Kansas City’s second world championship in 30 years.
Over the next couple of months Randy’s health continued to decline. During one of my visits his girlfriend was out of the house.
”James, please make sure that I don’t end up on a ventilator again.”
Before Randy came on hospice he had a horrific hospitalization. He was on a ventilator for over a week. It was a miracle he ever came off the device.
“James, being on a ventilator was a traumatic experience for me. I don’t ever want to experience that again. I just want you to keep me comfortable. I want to stay right here at home for the end of my life.”
“Does Amy know this is what you want”?”
”Yes, I have told her many times, but I worry she will panic at the end.”
”Okay, I promise to help her remember when the time comes.”
It wasn’t too may weeks later that I got a message from the office to call Amy. The message said that Randy was having a hard time breathing, and Amy wanted me to go and check on him.
I walked into the house and Randy was sitting in his favorite recliner. He was leaning forward with elbows on his knees; A common position for people who struggle to breathe. He was very lethargic and was barely able to make eye contact. I called our equipment company and had a hospital bed delivered STAT. While we waited for the bed, I administered a high dose of medication to help him relax.
After the bed was setup, I helped Randy get in. Since that day I have helped do this many times. When someone looks this sick, I know they will never got out of bed under their own power again.
Randy’s girlfriend watched from across the room while all this was taking place. She was calm. She was too calm. I could tell she didn’t have full understanding of what was happening. She thought this would be temporary.
“Amy, come over here and sit down with me?”
She sat on the sofa with me. Next to us was the hospital bed with Randy in it. I put her hands in mine and looked her in the eyes.
”Amy, his lungs are failing him. He is going to die in the next few days.”
She stood up in shock!
”What? No! James, he can’t die! We need to call 911 right now!”
”Amy, hold on a second.” I said calmly. “Sit back down with me.”
She reluctantly complied.
”Randy has discussed this with you, hasn’t he?”
She paused for a minute trying to clear her thoughts.
”Yes, we talked about it.” She finally answered.
”What did he tell you was his wishes after he was on the ventilator last time?”
”He told me he never wanted to experience that again.”
”Amy, if we call 911 right now. They will come and get him and take him back to the hospital. He will end up on a ventilator again. Is that what he wants?”
”No, he doesn’t want that.”
”Okay, he has made this decision for you. He has taken this situation out of your hands. Now it is your job to make sure his wishes are honored. You have the power to grant this wish for him. Keep him here, at home, where he wants to be. Don’t let him wake up at the hospital with tubes in him. It is not what he wants.”
She felt empowered. This gave her a sense of purpose in this sad situation. She was going to lose the man she loved, but she was also going to be his guardian till the end.
When I first got into hospice, I really thought I would have memory of every patient I cared for. I was so excited to work in hospice that I told my mentor during orientation I would want to attend the death of all my patients day or night. He smiled at me and explained how impossible that would be. I didn’t realize how many people I would care for.
I have been in hospice for just under 7 years. I can say, without fear of contradiction, I have cared for hundreds of dying people. It is impossible to remember everyone. The sheer numbers alone make it difficult. Still, some patients remain a part of my memory forever.
I will never forget Angie. She lived in a rural area of Kansas City in her daughter’s basement. Every time I would visit she would be pulled up to her computer reading Facebook. She was almost completely blind, so she used a large TV screen for her monitor, and everything was blown up to about 200 percent. She would look at the screen from about 6 inches away. Any time I visited she would just wave me into the room without making eye contact.
”I’m working on FarmVille, James. I’ll be right with you.”
I would just sit by her hospital bed and wait patiently. Eventually, she would push herself away, apologize and let me perform my assessment. She was a cute little short lady with heart failure. Over the next several months her health continued to decline. She was not a candidate for any type of aggressive care. We addressed any out-of-control symptoms as they would arise. I would call her cardiologist and get new orders to treat extra fluid and chest pain.
It is normal for all hospice patients to begin to lose their appetite. The body is slowly failing, and the desire for food begins to subside. As the caloric intake declines, weakness and lethargy take over. This isn’t painful at all. It is a normal part of the dying process. Eventually, everyone becomes too weak to get out of bed. Angie was no different.
One day I made a visit and, for the first time, she was not sitting in front of FarmVille. She was lying in her hospital bed. Her daughter was sitting in the other half of the room as I sat down next to Angie’s bed.
”I’m too tired to get out of bed, James.”
”I know.” Was all I could get out.
I sat there in the quiet for a few minutes. I could tell her daughter knew things were getting closer to the end. She understood.
I looked back at Angie and said, “Your heart is failing you.”
She looked back at me and said, “You mean I’m not going to make it?”
I got goosebumps. I looked at her daughter. Her daughter looked back at me and gave the slightest nod.
I looked back at Angie and managed to say, “No, you are not going to make it.”
Angie cried.
After a few minutes, she gathered herself. I pointed to a ledge on the basement wall where she had at least a dozen Bible based figurines. She had the entire Christmas Nativity set up on the wall. I looked at Angie and asked her what I was looking at.
”That is Jesus, Mary and Joseph. I also have some of the saints up there. Peter is there and so is James and John.”
”So, do you believe you will go be with Jesus when this life is over?”
”Yes, I get to go be with him.”
“Will it help you to think of them every day when you wake up?”
”Yes it will help a lot, James.”
Her daughter looked at me in approval. Over the next few weeks Angie moved from this world to the next. With every visit we looked at her figurines on the wall and discussed what awaited her. Eventually, she went home to be with her Savior, Jesus.
I will never forget Angie.
I remember her, because she was the first person I ever told they were going to die.
You never know what your first visit with a patient will be like. I’ll never forget my first visit with Earl. He was living with his wife in downtown Kansas City. They had lived in that house for over 50 years. Most of the houses around them were either vacant or in complete disrepair. Walking in the front door was like traveling back into the 1960s.
I don’t think he really wanted to be on hospice. I think he did it because that’s what his wife wanted.
”How is he doing?” I asked her.
”Oh, I don’t think he’s doing very well, but I better stay out of it.” She replied.
I performed my assessment. I asked if he had pain. He said yes. I offered medications. He said no. It went on like this for the first 2 weeks. We spent most of our visits watching TV. It was either a Royals game or poker on ESPN. Always sports. After a few weeks we started making commentary on what we were watching. Nothing deep or specific. Just a couple guys watching TV. I can still hear his voice in my head. He sounded like Lewis from Christmas Vacation when he was telling Bethany to “say the blessing.”
”Who do you think is going to win?” I would ask.
”I don’t know, James. This is some really bad baseball.” He would respond.
After a couple months he started agreeing to my suggestions. I’d spend the first 30 minutes just watching ESPN with him. At some point I would start with my assessment. He was getting weaker, and I think he knew it. One day I asked him if I could get something delivered to truly address his pain.
”Whatever you say, James.” Became his response.
Each visit I would address something new, and his response became standard.
”Whatever you say, James.”
”Your blood pressure is getting low. I think we need to decrease your medicine.”
”Whatever you say, James.”
“I think you need to take your pain medicine twice a day.”
”Whatever you say, James.”
One day his wife caught me on the front step of their home before I went in. She told me that he had fallen several times since my last visit. She explained that, since his last fall, she had been pushing him around the house on his seated walker.
”Don’t let him know I told you. He would be so embarrassed.”
I sat down next to him. His color was different. He was so pale.
”You don’t look so good, my friend.”
”I don’t feel so good.” He replied.
”Listen, let me get you a hospital bed in here. That way you can relax while we watch ESPN together.”
”Whatever you say, James.”
I had the hospital bed delivered that evening, but it just sat there the rest of the week. The following week I got a call from his wife.
”You better come early this week, James. I can’t get him out of his chair. He’s been in it all day.”
I shuffled some visits around and made my way to their house. He was very drowsy, and I knew we were getting close to the end. I walked over to him and sat down.
”How are you feeling today?”
”Not very good, James.”
“Can I help you get into bed?”
“Whatever you say, James.”
I helped him get into his wheelchair and pushed him over to the hospital bed set up in his living room. I lifted him into the bed and helped him get situated. His wife smiled at me in approval.
He died later that week.
Hospice is a heart job. I think sometimes we complicate things. Not everyone wants deep and complicated medical care. Not everyone wants a complex assessment with lots of big words and fancy solutions. Sometimes, our patients just want to feel normal.
Earl was really sick, and he knew he was sick. He didn’t want a nurse who was also his friend. He wanted a friend who was also a nurse. For Earl, friendship had to come first. I joined in on what he found important, and that gave me influence with him. I built trust, and he needed to trust someone before he would let them help him.
Eventually, I was able to give him and his wife what they needed through hospice care. I just needed to be patient and find out what Earl needed from me first.
I became the friend Earl wanted, so I could become the nurse he needed.
Work-life balance is one of the biggest challenges for hospice nurses. It’s so incredibly hard to turn it off when you get home.
I spend a lot of time trying to help my staff develop good habits. I try to explain to them the importance of turning off the work phone at the end of the day. I explain that we have on-call staff for a reason. I tell them, “Educate your families on calling the main number after hours. Teach them that you are not available in the evenings or on the weekends to field their questions.”
The absolute biggest key to having a work-life balance is completing everything you can while with the patient. This includes entering orders, calling the pharmacy, updating the care plan, writing IDT notes and absolutely charting and locking the visit.
I tell them, “When you get home, be with your family. Don’t be working! Your family needs you. Be there for them!”
My wife and I have been getting a lot done around the house this year. A lot of it we have contracted out. We got the HVAC replaced. We got two new garage doors put in, and we are about to get the house painted. There has been a lot to do. When I got home today, she had a short list of items for me to complete. After a couple busy hours, the work was done. I was ready to come inside and get cleaned up.
As I walked through the living room headed to the shower I told her everything was done for the evening. She said, “You can relax now. Your work is finished.” I looked at her and said, “I’m glad my second job is complete.” Without missing a beat she said, “Home is your first job.”
My mother-in-law worked as a Certified Nursing Assistant for almost forty years. She retired about three years ago. Her last fifteen of those years was out in the community with Visiting Nurses. She loved her patients like they were her own family. When asked if she was going to become a nurse, she would just smile and say, “I want to be with my patients. Not spend all day doing paperwork.”
For forty years that is what she did. Rain or shine. Snowstorms and blistering hot summers. She was as reliable and hard working as anyone I have ever known. Her patients got the best care she could possibly give them. Any weekend we visited her; she would tell us stories of her patients. She would give them gifts, and they were always giving her gifts. She was their family, and they were her family.
Being a nurse’s aide can be a very thankless job. They don’t get the same accolades and praise the RNs, LPNs and Physicians get. They receive no recognition publicly for what they do. It’s just not glamorous work.
What I have learned in my twenty-seven years of nursing is that nurse’s aides don’t even want that stuff anyway. It’s not why they do what they do. They just love the people they take care of. They see most of their patients like a mother or father. They see them like a brother or a sister. Someone who just needs their help, and they are eager to provide that help. Even if most of the rest of us find it either too physically demanding or just gross. They do it every day. All day long. Without complaint.
To all the nurse’s aides, thank you. Thank you for being the backbone of healthcare. Thank you for doing the dirty work and loving it. Thank you for rolling up your sleeves every day and making sure all our patients get personal hygiene care. Care that brings relief no medication can ever match.
Please join me in celebrating nursing assistants all over America during National Nursing Assistants Week.
