More than a year ago, I came to the end of a nine-year shift — the most important one I had ever worked — and there was no cash reimbursement for it. About a decade ago, I noticed a small swelling in the right side of my best friend’s neck right below his jaw. Our ENT physician set up an appointment at Memorial Sloan Kettering Cancer Center in New York City, where the diagnosis of stage four head and neck cancer was confirmed and treatment plans made.
My friend, who also happened to be my husband of many years, had endured one of the most toxic kinds of chemotherapy and more than 33 radiation treatments. He spent much of that year-and-a-half as an inpatient. He lost most of his hearing, was nourished through a PEG tube, was actively psychotic and had failing kidneys. As a psych nurse, I began to learn oncology 101 very quickly and stayed constantly updated on patient care. I learned how to treat, soothe, comfort, protect, advocate and cry for more hours than I care to remember.
My children and I took Bob home as often as we could, even though it was never enough time. But we learned home care. We gelled burns; performed PEG feedings more often and in smaller amounts to prevent stomach upset; and sat and watched the news, cooking shows and war movies with him while teasingly asking him if he knew who won the war. He was tough, we were tough. He recovered and again began to enjoy his life with family and friends and, of course, good food.
Then he had a massive stroke. He could not talk, swallow or ambulate. With the expertise and persistence of the staff at Kessler Institute for Rehabilitation, he again recovered to the point of being able to walk with a walker and use a scooter. There still was some right-side weakness that made him unsteady and unable to drive. Swallowing was never again easy and the stroke left some cognitive deficits that affected his words, short-term memory and reading.
But he knew us all and loved us all and let us know it on a daily basis. My biggest job during this period was learning when to hold on and when to let him go even if he might, and often did, fall. He was determined and tenacious about staying as independent as possible, but also taught us how to be gracious when one has to ask for help with things usually done in private.
In the meantime, his kidneys began to fail and he started on peritoneal dialysis, which I learned through a kind and dedicated RN, so I could perform it at home. He told me every day how much he loved me.
I worked the long hours of this shift without regret and knew that being a nurse was helping me to do so. So much of his care I could do at home without constant trips back and forth to an ED or inpatient stays. I knew that having his children, grandchildren and friends around was important and supportive for both of us.
My nine-year shift ended last year after Bob had a quiet heart attack when we were all out of the room for a few minutes. He went without fuss. He went as he would have wished. He was tired. I know that even though I was not ready for the end of this shift, it was not my call. Even through the unbearable grief of losing my best friend of 43 years, it was being a nurse that helped me make his last years easier for him and easier for all of those who loved him.
By Leah Johnston-Rowbotham, MS, APRN, BC, a faculty member for the College of Nursing at Seton Hall University in South Orange, N.J., and in private practice as a group therapist for women.