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ViewsThe Journey of a Lifetime
By Donna McCarten White RN, PhD, CNS, CADAC Addiction Specialist
I was 24 years old and I had just resigned from the Head Nurse position at the newly created NICU at Boston City Hospital. Back then it was known as the Special Care Nursery. I was emotionally drained because in one month, we had seven infant deaths and I knew I had to leave the work of caring for critically ill newborns. My heart ached every day I went to work and I began to feel that birth was an endless series of beeps, whirrs, lights, and emergencies. I knew the time had come to seek a different type of work if I was to remain a nurse.
I was hopeful as I started in a new role in a Women’s Care Unit in a new hospital. Everything was different for me and I looked forward to a change in the type of clinical practice I would learn. The Human Resources person clearly informed me of the average ages of the women I would care for and the list of the most common diagnoses being treated in this unit. But nothing prepared me for what I would experience in my journey of caring for one woman who would change the course of my career.
The first day after I completed orientation, was like any other day on the unit. I was feeling less overwhelmed with all that I had to learn. The transition from neonatal care to adult women seemed daunting enough but I was never one to shy away from a challenge. My mom always said I had my father’s blood in my veins and I was fearless in a job or any duty assigned to me. I was never fully sure about what she meant…but I knew I had to learn the workings of this unit if I was going to survive. And now, another woman’s life whom I would care for would affect me so deeply and alter my plans in life.
I reported early that day since traffic was light getting to the hospital. I had an early coffee and was given my assignment for the day…which also seemed light to me. I was puzzled why the Head Nurse only gave me two patients, one of which was being discharged in the afternoon. The woman readying for discharge had a routine hysterectomy and was showered and packing her things to leave and go home. She was feeling much improved and had many questions about ERT which I researched for her since my other patient was still sleeping. I did discharge and medication teaching with the woman going home and I looked in on my other patient. She was awake and staring out the window. I gathered all the morning care items from the unit in the hall and went back to her with sheets and towels in hand. I said “Good morning…my name is Donna and I will be your nurse today.” She was a beautiful young woman with long red curly hair. She was busy writing and did not look up or acknowledge that I was even there. I repeated who I was and again there was no interaction or awareness I was there. I went about my usual duties in her room and she never moved from her seat, looked up, or spoke.
At this point, I was wondering what I was doing or had done wrong. My unit educator came in and overheard me repeating the introduction of my role to this patient. The educator called me outside of the room and I shared how I must be doing something wrong. I told her how I had done everything I was supposed to and this woman just keeps writing without speaking. The unit educator was an older woman with a gentle disposition, a soft approach, and kind eyes. She was everything I aspired to be someday when I felt like I really knew how to be a good nurse. For a long time, I felt caring for critically ill newborns was hardening my heart. And soon I would learn I very much had a heart since it would feel like it was being crushed in my chest.
Kate, the educator, listened to my concerns and gently put her arm around me and said…”Donna, your patient is 26 years old and she is dying of Ovarian Cancer. She is writing goodbye letters to her children who are 2 and 4 years old.” At that point, I didn’t hear anything else. This woman was my age and she was dying! She would leave 2 babies to be motherless as they grow up. I choked back tears and I knew, if anything, I had to just finish the day. Now I knew why my assignment was so light. I periodically went to check on my patient and she never spoke at all. She just slept, wrote, or stared out the window. My heart was so heavy. And I thought that working in a Women’s Unit would help the enormous stress I experienced in the NICU.
How different this clinical work was but the psychological toll was profound. I sought out Kate to ask her how best I can do this and if I even should? Kate coached me with each question and knew I was struggling with how hard it is to work with those who suffer on so many levels.
As I wrote my nursing notes at the end of the day, I saw the Psycho-social Assessment from the Unit Social Worker. I sat quietly and read the 4 pages of my patient’s young life. She married at 19 and had 2 children by the time she was 24. She had worked as a waitress to help support her family. She was married for 7 years and her husband drank heavily. The social worker described his drinking as “alcoholic”.
I remember closing the chart and my eyes welling up. Having lost my own mother the previous year, I was thinking how at least I had my mom until I was a young woman. And this patient’s 2 little girls would grow up without their mother and live with a father who finds solace in a bottle. I lived with alcoholism in my family as a child, so I knew how hard it is to find parental caring. I could feel my own beliefs and thoughts blurring over into my professional care. Many years later, I would learn this is called “blurring of boundaries”. But at that point in time, I wanted to help my patient and didn’t know how. I needed to help me and didn’t know why.
I knew as I read more of her life, this woman needed support as she transitioned from her earthly existence as a young mother, now terminally ill and facing death. She would be leaving her little ones… with a husband who was not a person offering her comfort or support as she faced the ultimate unknown. I could feel my anger at God brewing.
The next day, I repeated my routine. The Head Nurse assigned me the same patient – and only her. I understood the Head Nurse’s reasoning since the care required was more emotional than physical. And she wanted me to learn that the work on this Unit could be so painful and gut-wrenching. I inwardly vowed to do the best I could.
It was so hard to look at this young woman and know her life was to end soon. On the third day, she looked at me and told me her name was Carol*. I shared with her I knew her diagnosis…and I would not interrupt her writing or her thoughts unless she so requested. Which, she eventually did. I quickly realized… this work was not about me – it was about this woman and her facing what had to be the most alone feeling in the world.
Somewhere at the end of the first week in caring for her, Carol* asked if I had time to sit and talk. I told her I was hers alone and I considered it an honor to be with her. She looked puzzled. I explained all this was new for me and I wanted to help her. She told me “No one can help me now”. I swallowed quietly and asked her about what she was writing. She talked about how she wanted her daughters to know her. They were so little she was afraid they would have no memory of her, so she wrote to each of them telling them how she loved them and cared for them as babies. She wrote and told them their favorite songs as a baby, how she would rock them to sleep and the toys they would play with. It was becoming increasingly hard to listen to her loving stories of mothering and not well up with tears. She spoke of the loss of them being hardest for her.
She then talked of her husband and how they fell in love. His drinking had started early but increased over the past several years. She worried for her little ones. I choked back the tears and asked her who was in her family that she could ask for support helping her daughters to grow, She knew her own mother would help but also knew her mother was getting older and what would happen then? She did not envision her husband in a parental role. She spoke about how he could not handle her illness and raising the girls alone would be too much for him. She predicted his drinking would escalate and she worried he would die from it. Then her babies would truly be alone.
I couldn’t believe what I was hearing. I was not prepared as a nurse to provide this type of emotional and psychological help and support. Whom could I call for this patient? Who is on staff to provide help? And deep in my own heart, was the nagging resentment towards her husband. Where has he been during this hospitalization anyway? Drinking heavily somewhere… mired in his own feelings of loss and grief? How is he helping her? Does he even care? No one seems to have met him except the social worker.
I sought out the Unit Social Worker who helped me sort out my own feelings and then helped me to understand that anger towards the husband of this patient will not help the family. She had such a profound effect on me that I saw my own personal childhood family from a different perspective. Carol* became increasingly quiet as her disease progressed. She was medicated for her pain and she had infrequent periods of wakefulness. The second week I was caring for her, Carol’s* mother brought in the 2 little girls to hug and kiss their mother. We had to get special permission for this to happen since children were not allowed on the unit. The Head Nurse advocated so strongly for this, I knew it would happen. The day they came I felt it was a spiritual privilege to bear witness to it all. The grandmother took pictures with an old camera, and she promised her daughter she would frame the pictures in each of the girl’s rooms. I thought my chest was going to burst with a complex swirl of sadness, love, and grief.
And then I met Carol’s* husband. He was quiet, kind and you could tangibly feel his grief. It was not the picture I had in my mind of who he was. This man was gentle with his wife…but distant in his own way. You knew he wanted to be more than he was but didn’t know how. He had difficulty with emotions…that was clear.
I spoke to him outside the room and allowed him to talk openly. I offered to page the physician…but he said there wasn’t anything the doctors could do anymore…so why bother? I understood. I tried explaining how we kept his wife medicated so she wouldn’t suffer…and with that, he burst into tears. He openly wept how he had not been a good husband and that he knows he drinks too much and maybe if he were home more she would have gone to the doctors and caught this cancer earlier. And she would have lived. He kept repeating it was his fault because of his drinking.
Now, at the time…I wasn’t sure of how to correctly approach all of this…but I offered reassurance that he could change his life and be the father he wanted to be. I would find some resources for him and have it ready when he came back in to see his wife. He left to get coffee and he came back. He said nothing as he sat in his wife’s room as she lay silent. His silence and sadness were palpable.
We gave him the letters Carol* had written for her babies. I had made a photocopy for the grandmother for her to have. I also found information on Alcoholics Anonymous with the help of the Unit Social Worker and gave it to him privately. I told him this was what we talked about and what I had promised him. He thanked me and put it in his jacket pocket.
Carol* lingered for another week or so. Death came slowly and she never cried or whimpered. She would just look out the window or sleep well-medicated. Her family all came in as the end hovered. Death was looming and it pervaded the air in the room. Her sisters and her mother all kissed her and said goodbye through their tears. But when her husband held her, wept and hugged her and told her he loved her like no other….and then promised he would be a good father…I thought my knees would not hold me straight up. She took her last breath in his arms and he said goodbye as he kissed her. She was as beautiful in death as in life.
It was then my role to prepare her for transport to the hospital morgue. I completed the paperwork and cared for and wrapped the body of this woman I had come to know and love. It was so hard to say goodbye and to see her lifeless. I kept thinking about how much I would miss her…I could only imagine the loss her family felt.
Having learned about the disease of Alcoholism because of this gentlewoman and her family, I would eventually decide that education and treatment of Alcoholism and Addictive Disorders was where I wanted to focus my career. The intersection of her life with mine…changed where and how I would continue in my clinical work. I furthered my education and dedicated my career to helping others believe they can change their lives. When I have felt over the years, I was losing my way, I would look to the heavens and when a star would shine, I wondered if it were Carol* guiding me from above. I tell those I guide and mentor, that the most powerful lessons in life cannot be taught in a classroom.
And I hope wherever Carol* is in the Universe, she knows I think of her so often, I share her story when I teach…and I pray for her little girls every day of my life.
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The Journey of a Lifetime
By Nurse Advisor Magazine (Official)
I was hopeful as I started in a new role in a Women’s Care Unit in a new hospital. Everything was different for me and I looked forward to a change in the type of clinical practice I would learn. The Human Resources person clearly informed me of the average ages of the women I would care for and the list of the most common diagnoses being treated on this unit. But nothing prepared me for what I would experience in my journey of caring for one woman who would change the course of my career.
If there is a Heaven, there is a place for you in Heaven. Your story is very moving. Thank you for sharing.
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