I’m an assistant clinical faculty member at a local university which trains nurse practitioner (NP) students. For me, the next greatest thing to providing patients with Palliative Care, is to teach it. I enjoy teaching immensely and when the NP students rotate with me it’s great to see their growth over a 10 week period. As part of their grade to pass, they must do a reflection project. Although “project” may seem involved, I leave it up to the student to decide what they are going to do. I give them some examples of students who did it during my fellowship, which included poems, photography, water painting, playing an instrument, interpretive dance etc. The only criteria is that it reflects or ties in to what they have learned through the rotation. The following essay was written by one of my students and she gave me permission to post it here.
I think “end of life” first registered when I was 9 years old.. I found a copy of Kubler Ross’s On death and Dying in my home. Probably present because of my father’s exposure to his own father’s untimely death at 50 years old. and I preceded to weep on the front porch where my parents found me. “No, Darla, no one is dying.”
The youngest of four. I was really a “Daddy’s Little Girl”. And I think as my parent’s lives and marriage got better, I became their love child that got to explore a better time with them. But shortly after my 12th birthday, in January, 1985, a weekend get-away with my parents was cancelled. Something about dad having headaches and having to go to the hospital. When my father called from the hospital to tell me the news that our trip was cancelled, I am pretty sure I was enraged and no idea what was in store.
My brother came home that night and said “Don’t worry, Darla, he just has headaches.” The next morning was different. My mother sat me on her lap and told me that “Dad was going to die; he has a brain tumor.” If it wasn’t so sad it would be hysterical. There was no hope, no prayers. Just that. He is going to die. Period.
I got every stuffed animal and poster off my wall to bring to his “bright eyes” at the Mass General Hospital. My mother said his eyes were bright because of the high doses of steroids given to relieve pressure on his brain. They did the craniotomy on January 13: his glial blastoma was too entwined in his brain they told me. It was too twisted together. It was like two hands wrapped together. This tumor resembled his namesake, his own father’s brain cancer. Just a different area of the brain and more aggressive.
They told us he had 9 months to live. Did he and my mother discuss ‘goals of care’? I guess. They made the decision for him to Die at home. This apparently not well-supported by my father’s family. His children, us, watching his last hours and days of life.
At month 8, I went to a friend’s house for a sleepover during which time he declined so rapidly that when I returned that weekend, he was in a wheelchair and was nonverbal.
Once confined to bed, I used to lie in his adjustable bed with him, much like my own children lie with me. And I remember how he smiled when the around-the-clock private duty nurse said, “Look Barney your daughter Darla is here. She is helping to turn you…” I remember those bright eyes shining when he would see Redd Foxx on the TV. It was so innocent and beautiful.
Family came and went. Hurricane Gloria blew into town late September, 1985 and I danced and danced and danced in the wind.
I remember his breathing became shallow and slow. And looked like it might stop. And then it would just start again. My mother says now that he died Christ-like, saintly. She said he died free from sin. He was just skin and bone.
And at 9 months on October 1st, just as the doctors told us, he died. In our dining room, in an adjustable bed. Holding the precious hands of his namesake, my brother. the only one that was his by his side. He took his final breath.
I awoke to my mother crying and she told me he was gone and I jumped on his adjustable bed and hugged his lifeless body.
My mother, a nurse, said she didn’t sleep for a year. Having to sleep in a day bed close to his adjustable bed for fear that he might get up and fall.
Ironically, hospice, wasn’t popular my mother said. My father missed the Hospice Medicare benefit by one year.
And he also missed Duke University killing Brain Cancer with Polio by 31 years.
I know why it is so important I tell you this story. Because nobody talked about him after he died. I mean nobody. It was too painful for my mother and my older siblings were kind of tuned out. My family kind of fractured after he died. And we have been trying to put it back together ever since.
My siblings and I, we became survivors. In a unique club.
Why is it important that I tell you this? Because life has supported my healing and I have found purpose. I guess a 12-year old doesn’t understand the finality of life. Adults might. There are no videos, no tape recordings of him. Few pictures.
And it shaped me, it led me to be here.
But I found that just like someone who has breast cancer gets involved in the fight. I am getting involved in the fight to support people who are dying that happen to be living. Because maybe if we just start talking about dying, we really won’t miss living.
My dad missed a lot. He missed his son-in-law’s. And you know he really got cheated. He told me he really only had children to have grand-children. And he really missed out on that. But now I get to see his “bright eyes” in my children’s eyes. And I do. And I am so happy that happened. And I am really happy that this happened (rotation in Palliative Care). And I got to be here. Because it is very important. And I tell my children that all the time.