Chapter 1

I've been taking care of Oncology patient for almost 30 years now. I’ve been talking to them about dying just as long. It started during my very first job, as a Pediatric nurse, and a 12-year-old boy put on his call light. His parents did not want him to know he had leukemia because they wanted to protect him from the inevitable. I walked in his room, a young nurse of 22 years, when he told me he just finished watching Marcus Welby. “The boy on the show had the same problems I have and he had leukemia. Is that what I have?” he asked. It was the biggest ethical dilemma I had encountered in my one-year career and one they never covered in our Medical Ethics class. I looked at him. He wanted to know. I've never been a good liar, so I told him the truth. I said 'yes.' The next day I waited for my head nurse to call me in her office and tell me I was fired. It never happened. The little boy went home and I never saw him again.In the following years, I attended workshops about death and dying. I even heard Kubler-Ross once. I watched more experienced nurses talk to dying patients, listened to chaplains and took it all in. I hated it when people would say a patient 'expired.' A very good friend of mine would say, 'credit cards expire, patients die.' I could not understand why death was such a taboo topic.

So, after 30 some years, I thought I had it all figured out. Then myfather was diagnosed with cancer. He had colon cancer and he had metastasis to his liver. When I heard about the liver mets, I knew it was not good. I cried very hard that night when I heard the message from home. Finally, I called because I knew they were waiting to hear from their daughter, the Oncology Nurse.  We talked and cried. My mother kept asking me how long and I continued to tell her that there was not way to tell for sure. Dad's oncologist told them about six months. Dad lived one year longer than the oncologist thought.

During dad's fight, my mother was diagnosed with Stage V lung cancer.Six months later she had developed brain metastasis. She and dad shared the same oncologist. He was optimistic that radiation would put her brain mets in remission and she would live for another two to three years. Mom died about two months later.The reason I write is to tell the story of two extraordinary people,who happen to be my parents. It is also to share with you the incrediblelessons I learned being a daughter, who also happened to be a nurse. I did not think it would change the way I think about my job, but it has. It has changed the way I think about death.  It changed the way I will talk about death to patients and their family in the future.

When we found out dad was dying, I talked to him in the very beginningabout quality of life. I told him the day might come when his oncologistwould suggest the medicine wasn't working and he should think abouthospice. This happed much later than I thought it would because myfather did so well for so long. He was fighting to stay alive because hewanted to be with my mother for as long as he could. My mother aged significantly after dad's diagnosis. She worried endlessly about how she would manage when dad died. When I think about all this, it's not surprising that she died first. I really think this is how she wanted it.

When my brother called me in early September and said mom was not doing well with her radiation, I decided to make the trip to Indiana for along weekend to see what was going on. I never thought I would be there until mid October.When I arrived, I knew immediately that things were not right. Mymother was always an impeccable housekeeper. I found the counter tops cluttered with medications, there was rotten food in the refrigerator and the bathroom rugs reeked of urine. I started my 'assessment.' I asked practical questions about going to the bathroom. Mom said the decadron had made her weak, so she could not sit on the toilet any more. She was 'hovering' over the toilet, afraid, she was missing at times. When I asked her if she told the nurses or doctor this, she said she was fine and just wanted to get through the radiation. It was clear she was much too weak to clean or cook.

Dad was using a walker to get around the house and said that at night he would help mom to the bathroom, one of them on each side of the walker. I wanted to cry. As I watched mom the next two days, I knew she was having more than just weakness from radiation. I took her to the emergency room. After the various test the doctor found out the radiation was not helping at all and two more areas of mets had developed in her brain. Her oncologist told me her prognosis was very poor.

I sat on the side of my mother's bed, in the hospital, and told her what the doctor told me.' Stop everything' she told me. 'No more pills, no more anything, take me home to die.' I asked if she was afraid of anything. She told me she was afraid of pain and afraid of leaving her children. We talked about both of these. I promised her I would make sure we had pain medication for her. I would give it to her even if it meant she would be too drowsy tocommunicate wanted, if that is was what she wanted.  Yes, that is what she wanted. We talked about whom she wanted and whom she did not want in the house. We said I love you to each other many times. Then, I went home to tell my dad I was bringing his queen (as he frequently referred to her) home to die.

Someone from hospice was sitting with dad when I arrived.  I waited until she left and sat with my father and told him the news.  It was only one of the three times in my life  I sat with my father as he cried. I asked him if I should get a hospital bed for mom or if he wanted to sleep in the same bed with her. He looked at me with a puzzled expression. “Why would we get a hospital bed?” he asked. I explained that he might be in bed with mom when she died and I did not know if he was comfortable with that. He looked at me and asked me if I had asked mom the same question when we thought he would die first. I told him we had talked about it.“What did she say?” he asked. I told him she wanted to be in bed with him and knew that any day she might wake up and he would be dead. His response was. “Then we don't need any hospital bed for her. I want to be with my lover.”My parents were lovers and I knew this. What we might forget is that many couples are lovers, even when they are older. This is something I will not forget about my patients and their spouses.

I continued to ask my mother if there was anything she was afraid of or wanted to know. She was comfortable and not in pain, but still worried about leaving her children. I reassured her that we were all grown up, we would help each other after she and dad died. We had always been close and I could see this making us closer. Finally, she said she believed me. Mom died holding my father's hand. My brother and I had the other hand together.

Dad had a terrible episode of bleeding from his colostomy the nightafter mom died. He lost about 1500 cc of blood and was very weak. I knew he would never be able to get out of bed, let alone attend the wake and funeral mass of my mother. We talked about what to do. I told him if we did nothing he would get weaker and die. Or we could check to see if hospice could arrange a blood transfusion for symptoms of shortness of breath. He said that he owed it to his wife to be at her wake and funeral and he wanted just enough blood to help him get through that.So, it was arranged.

After my mother's funeral, dad never got out of bed again. Hedeteriorated slowly. About one week after mom funeral, he asked me to take as good care of him as I did mom. I promise I would. He wantedmorphine for pain control and oxygen intermittently. He said that he and mom always talked about dying at the same time. "I guess this is how it's going to be,' he said, " I'm ready to die now." During the next week, dad kept telling me things I had to do after he died. He had me bring things into the bedroom. He wanted folders and checkbooks and files. Finally, one night when I was sittingwith him I told him, "Dad, you made all the arrangements for mom because you thought you would die first. Everything is in order. We have gone over it several times now. I can figure it out. Your files are self-explanatory. You don't have to worry. I will be able to figure it out."

A few days later Dad died. I couldn't believe that I had both parents die within a couple of weeks, but then I remembered how the spouses of patients I had taken care of died shortly after their husband or wife. In all honesty, I really believe that is how mom and dad would havewanted it. They had lived together as husband and wife for over 50 years and raised six children together. My husband, John, paid the nicest compliment to my father. As he was saying his last goodbye, he told dad to look around and see how his children had gathered to take care of him and mom. Dad repeated this to everyone he saw the next couple of days.I started writing this shortly after my parents died.

It is now almost two years later. I remember that time as being one of the most important times in my life. To be able to give back all the nurturing I was given and to spend the precious moments of my parents last weeks of life was incredible. I had some of the most intimate conversations that I had ever had with them. The one moment that will forever be etched in my mind happened a few days before mom died. She took my face in her hands and said, "Michaelle, I love you more than you will ever know." Those words echo in my head over and over. This moment reminds me that my patients have families that love each other just as much we did.