Gaining insight through experience: caregiver becomes the patient

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Dear Editor:

As registered nurses in an ED setting, we frequently care for patients with chronic illnesses. We have witnessed their suffering and watched their disease process take its toll on them physically, emotionally, socially, and spiritually. Many of them cry out for some type of relief. Others have given up and at times want their life to end. Our hearts are deeply touched as we endeavor to reduce their pain and suffering. I, just like you, long to understand and anticipate their real needs so that we might have greater impact on their health, well-being, and recovery.

My story began 4 years ago. I worked as a male registered nurse for many years in a variety of health care settings—the past 6 years in a level III trauma center in Idaho Falls, Idaho. I guess I witnessed enough suffering of patients and their families and observed too many of their pictures in the obituaries. I would wonder if I had done enough to help ease their burden of pain and suffering. I decided to give a concerted effort toward truly understanding the chronically ill or injured patient and becoming more productive and influential in their care.

Accomplishing this task in the emergency department is a tremendous undertaking because of time restraints and other responsibilities. Of course, our knowledge and skills are very important, but I focused on the patient's and family's true feelings and needs. About this time I began to notice needs of my own. Severe pain developed in my feet. It became difficult to walk, and we all determined that I had plantar fasciitis. I wore cam walkers every night for months to prevent foot extension, but there was no relief. During this time I lost the use of my left shoulder, both knees, both wrists, and both hands. The pain was agonizing. I would lie in bed at night bewildered at how such pain could have overtaken me when all my life I had enjoyed fantastic health.

Finally, after 6 months, I was able to see a rheumatologist and was diagnosed with rheumatoid arthritis (RA). It was such a relief to finally start on the road that I hoped would lead to recovery. I began taking methotrexate, prednisone, and folic acid. The pain gradually began to recede, and I was able to resume some of the activities I used to enjoy. However, I learned the true meaning of having RA. It was an all-out fight against a most painful debilitating process–almost unbelievable. I spent 3 years earning back the full use of my limbs.

At last I was to be weaned from prednisone and perhaps reduce the methotrexate when I noticed a suspicious lump on my body. I quickly visited with a specialist, who ordered the appropriate tests. Within 2 weeks I was scheduled for surgery. A week later I was informed it was cancer. Further computed axial tomography scans, laboratory tests, magnetic resonance imaging scans, radiographs, and doctor visits followed, which revealed metastasis to my abdomen. In the United States, radiation was the recommended treatment rather than chemotherapy.

Six tattoos were injected on my abdomen for proper alignment, and then I was placed on the gurney beneath the huge linear accelerator; it was quite intimidating. Everyone left the room, and then I heard the clap of a circuit breaker and the buzz of the accelerator. About 1½ hours later, the symptoms of nausea and vomiting started. I kept a piece of toast down the first 3 days. The radiation accumulates with repeated doses, so the symptoms began to grow harsher. At the end of treatment, I was so weak and dehydrated that I spent time in the emergency department receiving a banana bag and 3 L of normal saline solution.

Now a month has gone by since my last radiation treatment. I find myself reflecting on the past 4 years—the surgery and hospital stay, the numerous needle sticks, radiographs, scans, doctors' visits, and the uncertainty of my future health. The effects on myself and my family were staggering. When the arthritis began, one by one I gave up the sports and activities I once played. I remember crying on the ball field when I could no longer move my arm to play catch with my sons. I turned down their petitions to play ping pong, pool, and other games. I had to decline offerings from my wife to go for a walk down by the river. It's a life-changing, demoralizing, depressing weight that never lets up.

Nevertheless, my family was resilient and adjusted somewhat to their loss. However, when the diagnosis of cancer was given, I found them all crying in the dining room. This was too much! I couldn't be doing this to my family. All I ever wanted was their happiness. All my dreams included my being involved with each of their endeavors. Now I was dampening their spirit and quashing their hopes and desires. Instead of being a provider of security and money, I was mounting up medical bills and becoming a burden to them.

I had to retire to my room to consider what I could do to not hurt them so. Throughout my struggles I spent hours praying and contemplating the contributions I could make. I believe I always had the answer—I would stay positive no matter what! Even if my diseases took my life, I was going to go down smiling. I would do my very best at any activity, job, exercise, outing, and so forth, and be grateful for it. Every day I reiterated this challenge. I played games with the kids. I watched them play ball and perform at concerts, and I helped them with homework. It was a miracle! I was happy and they were happy.

When my disease process was at its worst, I became the patient. It was a tremendous learning experience for me. I found myself thinking that “being a patient” should be added to the student nursing curriculum. I was so sick that I appreciated everything the technicians, nurses, and doctors did for me, especially the nurses in the emergency department and the oncology center. Our training really does matter! They would come in, sit down at eye level with me, and tap me on the arm or give me a hug. They would say, “I know this is a difficult time for you, but we're right here with you. We understand the challenges that faces you. Then they would share positive thoughts, such as, “the sun always comes out,” or “whenever a door closes, a window always opens.” They were like angels! I couldn't believe they could make such a difference in my life. Their skills, professionalism, and care for me were astounding; and to believe that nursing was my profession! Did I have such an impact on my patients?

Now that my treatment is over, I feel that I'm back in the saddle again. My sons are surprised that I'm back playing ball with them. I so enjoy walking by the river with my wife. I'm up for games and activities with my family. It's a joyous time for all of us.

Professionally, I count every day I get to work a privilege. I love it! I so appreciate my team of nurses, unit secretaries, doctors, clerks, and so forth. What a magnificent contribution to a community we make. Each patient I get, I sit down at eye level, shake their hand or give them a hug, and give them my undivided attention—even if it's just a few minutes. I have a genuine feeling of love, care, and concern for them. I contemplate the effects their illness has played on their family, career, and social life. I can really understand their illness and the challenges that come with it. Sometimes I let them know I have suffered with cancer and RA, and other times it doesn't seem appropriate. The other day a 30-year-old man presented with a chronic illness. He was at his wit's end and wanted to end his life. I felt right there with him. I said words similar to those that were said to me when I was at my worst. I shared my experiences of suffering and pain and my determination to be positive and grateful no matter what. I was shocked at his response. Here, a grown man began to cry. He said he was amazed with my positive attitude and my understanding. I could feel his determination to hang on.

We can be such a blessing in the lives of our patients. They need us! Each of us brings a unique lifetime of learning and experience to each and every one of them. It is our exclusive touch that will make the difference and bring them cheer, hope, improved health, and happiness. Surely, we have the greatest profession on earth!