I knew where we were heading and it scared me. I didn’t want to have to think about decisions that would have to be made in the not so distant future. I didn’t want to be a nurse; I just wanted to be the daughter.
I knew Marie was special the moment I met her. Her home was one where all were welcome, the coffee always hot and fresh, the house filled with family and friends, and everyone left with a full belly. She freely shared her opinion, whether or not a person sought out her advice.
I knew Marie for nearly 30 years. She was my mother-in-law. She was also my cheerleader, proud that I had come so far in my nursing career. She told everyone I was a nurse and often referred to me as her daughter rather than specifying that I was her daughter-in-law.
Fiercely loyal and loving of her large family, she always put their needs before hers. I worried about her because she smoked and rarely visited a doctor. With regard to health, she believed in the notion that if it ain’t broke, don’t fix it. But slowly, health problems began cropping up. After a hospitalization for heart failure, she was diagnosed with COPD and hypertension.
Still, she lived life much as she always had—until she had a stroke. After the stroke, she lost the vision in one eye and the full command of her body. But in reality she lost much more. She could no longer drive and became dependent on her husband and children for things she once did freely and independently.
Her helplessness made her sad and angry, despite our assurances that we were a family and would do this together. And we did for the next 16 months, an exhausting cycle of hospitalization to rehabilitation to home and back again as her health deteriorated.
My father-in-law tried to do it all. He needed help, but he refused—the cost, the stranger in the house, the feeling that he was supposed to do all this himself. My sister-in-law visited him every day and would help her mother and father with the day-to-day things that constantly need attention. I visited regularly as well, taking charge of what I did best—medicine, doctor appointments, assessing whether or not she was stable, and cooking her favorite meals.
Navigating the endless appointments, the medication regimen too complicated for anyone but a nurse to figure out, watching my father-in-law struggle that his beloved wife was not the same, and the ups and downs with her health took its toll.
I knew where we were heading and it scared me. I didn’t want to have to think about decisions that would have to be made in the not so distant future. I didn’t want to be a nurse; I just wanted to be the daughter.
I wanted to rail against the unjustness of it all, but I didn’t because I needed to be Marie’s advocate. We have a complex health care system, and caregivers are not always well prepared to have frank discussions about end-of-life choices. By not having open discussions, health care professionals unwittingly encourage patients and families to believe that there is a miracle cure just around the corner—that just one more test, one more medication, or one more procedure can fix all that is wrong.
Marie wanted to believe there was a cure for all her ills; we did, too. But the reality is that medicine is as much an art as a science and there are still many things we don’t know. So the nurse–daughter began those conversations. We consulted a lawyer with experience in elder care. Mom finally wrote an advance directive; she made it clear she wanted no heroics, but could never bring herself to have a Do Not Resuscitate (DNR) order.
We cared for Marie, not knowing when the time would come when we would need those documents. The time came sooner than we expected. Early one morning, she was sent back to the hospital and went into cardiac arrest after her arrival. They resuscitated her and we gathered around the bedside.
My wonderful Marie was breathing with a ventilator and in need of blood pressure support. Because we’d had those difficult conversations, we knew what she would have chosen.
Family and friends gathered around the bedside. We cried—we talked and laughed just like we did during Sunday dinner. The nurses, doctor, and respiratory therapist were kind and caring, making sure she was comfortable when the ventilator was withdrawn, staying with us when she drew her last breath, consoling us in our loss and dealing with the 20 people gathered with Marie in her final moments.
She died as she lived—surrounded by people that she loved and loved her. And I am eternally grateful to the professionals for letting me just be the daughter, at least for a short while.
By Kim Dudas, PhD, RN, ANP-BC, CNE, associate dean of nursing and health sciences at New Jersey City University, Jersey City, NJ
Kim, l don’t where to begin, telling you and the rest of the family of our conversations. You are spot on, family family was our conversations. Remember, we go back 70 years. You were her daughter, She always said, thank God for her husband, children and grandchildren. That’s what it’s all about. You gave a beautiful tribute to her.