Gratitude and Compassion

From our readers: When your parent is the patient

parent

It’s not easy when your parent is the patient. In my 10 years of being a registered nurse, I have learned a lot, seen a lot, and considered myself desensitized to the information and knowledge that comes with being a nurse. I have been a good advocate for my patients and always listened to their concerns. With all this in mind, how could it be so hard to be a daughter of a father with stage 4 cancer? Why was it that I couldn’t figure out how to advocate for my father? It was if all my years of nursing school and professional practice had vanished from memory and I became daddy’s little girl instead of a knowledgeable professional nurse. Here is my journey of how I moved from that little girl back to nurse advocate.

About my father

In 1999 my father visited his primary care physician (PCP) because he had lower back pain and blood in his stool. His PCP diagnosed him with internal hemorrhoids, attributed the back pain to his occupation as a general contractor, and sent him on his way. My father accepted this diagnosis and continued with back pain and intermittent blood in his stool for five more years. In 2004, my father received his initial diagnosis of stage 4 rectal cancer. He underwent chemotherapy and radiation, and received an ileostomy. He wasn’t happy with the life-altering ileostomy but was elated that it had saved his life. He was considered cancer free, and resumed his normal activities including operating his general contracting business.

Five years passed and my father was still cancer free. Shortly after receiving his clean bill of health, he started developing symptoms that were eerily familiar. He again had left sided lower back pain. This time, he went to his colorectal surgeon who gave him a prescription for Percocet and told him to schedule another appointment in 2 weeks if his pain wasn’t better. My father did what he was told, despite the fact that he felt his colon cancer had returned. Two months later, after no relief from the pain, my father was scheduled for a computerized tomography (CT) scan, which showed a possible bulging disc that seemed to explain the back pain. This was good news, actually great news! His Percocet was increased, he was given a prescription for fentanyl patches, and he was sent on his way.

One year passed and my father’s left sided, lower back pain was worse than ever. It was now 2010, 11 years after his first episode of back pain and bloody stools, and he was having more pain than he had ever experienced. He returned to his PCP who scheduled him for another CT scan and ordered blood work. The CT scan again showed a bulging disc, but the blood work showed an elevated carcinoembryonic antigen (CEA). Further testing was done and positron emission tomography (PET) scan was ordered. Oddly enough, the PET scan came back positive for a tumor encasing his sciatic nerve. This was in the same area that he had been complaining of back pain for over a year. The CT scan had been negative, and as it turns out, the bulging disc had been seen in area that was not even relevant to his left sided, lower back pain.

When to intervene?

My father was a very independent person. He had taken care of himself since he was a child. He worked from the time he was 8 years old and supported his younger brothers and sister. I lived three hours from him, and with three kids and a full-time job, going to visit him wasn’t always practical. I didn’t worry too much about him because I knew he was a good patient. He always did exactly what the doctor recommended and never varied from the plan. For me to step in and take control was not an option. My nursing instinct told me that I needed to do something, but daddy’s little girl inside me said “let him handle it.” I had seen my father suffer from back pain for years. He could tell something else was wrong, why couldn’t I? It was if all of my nursing intuition had left my body and I was left with the shell of an uninformed, scared daughter. My fears and anxiety overtook my ability for practical reasoning. I sat in the doctor’s office with him when they read him the results of the PET scan. What I remember hearing was “You have an inoperable life-threatening tumor.” My father, stone faced, looked at his PCP and said, “I’m happy to know where the pain is coming from, when do I start radiation?”

As my father sat there and listened to every word his PCP told him, my mind started racing. Here I was sitting beside the strongest man I knew, listening to him receive a death sentence. All I could think about was how this could have happened and how he could have been misdiagnosed and underdiagnosed so many times. How could he be so calm when I was about to go through the roof? He had trusted every doctor he had ever met and he had been a “good patient.” I kept waiting for the nurse to knock on the door and pull the doctor aside to tell him he was reading the results from another patient’s PET scan. Even with my dad’s history of cancer, I still sat there in disbelief. I wanted to know why, and my dad only wanted to know how to treat it.


My father started with radiation within a week. Each time I saw my father his left side became slightly weaker. I noticed the gradual decline in his ability to walk and climb stairs. He hadn’t mentioned anything about it, so I didn’t mention anything either. My father was a “good patient” and if anything had been wrong, he would have asked his doctor about it. I thought this was just part of being fatigued, a side effect from radiation. I knew better, but why couldn’t I bring myself to just say something? Was it the fear of bruising my father’s ego and independence or was it the fear of knowing that something more was happening? Three months after finishing radiation he had full foot drop on his left side and was now wearing a brace and using a cane for balance.

Shortly after radiation, my father began chemotherapy. He was driving himself back and forth once a week for treatment and 2 days later to be disconnected from his portable chemotherapy. I make it a point to call my father every night on my way home from work. About 6 weeks into treatment I called my father on my way home and he sounded frail, weak, and exhausted. I knew something was wrong but my father insisted he was fine. I decided to follow my instinct and drove to his house after work. When I arrived, I found him alert but exhausted. He had lost 34 pounds. His face was pale and his appearance was disheveled. How could I be looking at my strong, independent father? He looked so vulnerable and sick. I wanted to take him to the emergency department but he insisted he was fine. He was scheduled for an appointment with oncology the next morning and said he would be fine until the morning.

Somewhere around 1 a.m., my father began having the worst case of painful hiccups I had ever seen. That, coupled with nerve pain from his drop foot and back pain from his sciatic tumor, made him miserable. His only relief was to kneel at the side of his bed and rest his head on his mattress. I felt helpless. There wasn’t anything I could do to relieve his pain. He was strong, he was independent, and yet all I wanted to do was scoop him up in my arms and rock him to sleep like a baby and hope to take his pain away.

The nurse takes a stand

The next morning we went to my father’s oncology appointment. I sat in the room as he explained all his symptoms to the oncologist. The oncologist reviewed my father’s lab work and decided to administer 1 liter of normal saline to correct hyponatremia, and have him return the next day. We did this for three days.

On day three, I asked the oncologist to consider giving my father a break from chemotherapy for the week. The oncologist looked at me and with a straight face said, “Ma’am, your father is dying from cancer; his symptoms are not going to go away if we stop treatment. You are looking at your average cancer patient.”

This is when the nurse in me came unglued. I was no longer daddy’s scared little girl. I was now the knowledgeable nurse with instinct and intuition. I knew something could be done to make him feel better. My father’s sodium level was still critically low. I was not going to allow him to receive chemotherapy. I walked over to the oncologist with my phone in hand and showed him a picture of my father 1 month earlier—a vibrant, healthy, strong, independent man. I said to the oncologist, “We are not leaving here today until you admit him to the hospital for pain management, hyponatremia, and dehydration.” The oncologist’s response was, “Why didn’t you tell me you were a nurse?” Would this have made a difference in my father’s treatment? Why did I have to use medical terminology to make him listen to our concerns? My father was admitted to the hospital where he stayed for 4 days while his blood levels stabilized and his pain was under control.

Becoming an advocate

To this day, my father is still fighting cancer. He remains a “good patient,” but he now has a new oncologist—one he can trust to treat his symptoms regardless of his diagnosis. I have learned a lot as a daughter of a father with stage 4 cancer as well as a professional nurse. I have learned to allow myself to break the fine line between daughter and nurse and advocate for my loved ones. I’ve allowed daddy’s little girl to break her fear of crossing the line and use my nursing knowledge to protect the ones I love. It’s not easy when your parent is the patient.

Julie Leonard lives in Chester, New Hampshire.

 

Related Articles:

One thought on “From our readers: When your parent is the patient”

  1. Kathy Zwers says:

    This was such a great example of the difficulty of transitioning from daughter to advocate! Am in a very similar situation, only my father is a retired orthopedic surgeon, which complicates the communication just a little more. He has always been the authority on medicine, especially where it concerns others, but is adjusting to a more dependent role himself, and does not always see the objective side of his illness. I am learning to separate myself from my daughter role to some extent, and while I don’t usually have a problem advocating for my dad, I also find negotiating the healthcare system to be frustrating and inadequate at times. Thanks for such a clear, relevant article!

Leave a Reply

You have to agree to the comment policy.

 

Shares