Teenage Daughter-Death Doula

About a month before my mom died, I stopped going to school. It was January of my Junior year in High-School and everyone was thinking about mid-terms and how this would decide the rest of our lives. I wasn’t thinking about the rest of my life at all. I was thinking about my mother. I was thinking about how she was my whole life and that maybe I would just die with her. Not that I was suicidal but that I couldn’t imagine a reality that did not include her. I thought I would evaporate without her. 

One night, while I was asleep in bed, I woke up to a horrible sound. I flew out of bed and searched for my mother. Had she fallen off of the couch? She had never slept in a bed or a bedroom in this apartment. Our living room had always been her space. She wasn’t there. I ran to the bathroom, but she wasn’t there either. I told her not to get up without calling to me for help! Where was she? And then I saw her foot, curled the wrong way coming out from underneath the kitchen table. I ran to her, the tears already pouring down my face. “Mama! Mama! MAMA! Are you okay?!” I reached my hands under her sweaty head and found a goose egg the size of my fist already forming on her forehead. It was the ugliest thing that I had ever seen. “Mama!” She opened her eyes and mumbled something that I could not understand. I bent down and picked her up like she was just a baby. I was not as tall as my mom yet, and I was only 115 pounds, but she was already wasting away. It wasn’t even hard for me to pick her up. I carried her limp body back to the couch and I tucked her back in. I sat with her all of that night and watched her chest rise and fall to make sure that she wouldn’t leave me. 

Sometime that night, my whole life changed. I knew before the sun even came up that I would not be going to school that day. That I would not be going to school any day in the near future. I wanted to be there for my mom and take care of her and spend every second that I could with her. 

That also meant that I would have to write a difficult letter to my boyfriend. He was the love of my life, but things had gone terribly wrong since he left for the army. He was a few years older than me, and almost as poor. He didn’t have the option of college or a job waiting for him, so he took the only chance boys like him were told they had. At first he hated the military. He would write to me constantly about how he was desperate to get out. Over time, those letters started to change. He would write things that I had never heard him say before. He was suddenly vocally racist and turning into a man that I did not know let alone want to spend the rest of my life with. He was furious when I told him I was not going to make the trip to Georgia with his parents to watch him graduate from military training. He could not understand how I could choose my mother over him. She was dying! Why would I be so focused on the past with her when he was my future! And he needed me!

I was alone. My best friends were all older than me and either graduated or were graduating. I hadn’t seen my half siblings since I was a small child and I had no one that I felt safe with or seen by. I turned to my best friend, who was a boy, for comfort. I am not proud of cheating on my boyfriend in the army, and to this day, I feel guilty, but I was scared and I needed someone to hold me and love me and take care of me and I had always been taught to turn to boys for that. Not taught by example, boys in my life had mostly been a source of trauma and violence, but in the stories that we are fed. This boy was different. He was gentle and kind and I felt safe with him. The night that my mom finally died, it was this boy who sat with me as I said goodbye. He went home well after midnight after his mother called frantic to our house looking for him. He was an upper-middle class boy from a good home and I honestly remember feeling a little guilty for scarring him with an AIDS death. That was for people like me. Not him. 

When he left, I laid down beside my mom. We had since gotten her into in-home hospice care and they had brought a hospital bed right into our living room. It was pushed up against the wall where our couch should have been. Above my mom’s head was a small prescription note ripped from a doctors pad at the hospital. It said Do not Resuscitate. I had fought for that note but I also hated it. I wanted to be strong enough to do this. To let my mom go, but I needed her. I felt selfish. I said the right things. I held her hands. I whispered into her ear that she could go and that I loved her, but my heart was shattered and I didn’t mean a word of it. 

I wanted to scream at her, “Mommy! I need you! Please don’t leave me!” but I knew that would not make a difference, and besides, she was already almost gone. Science and medicine would say she was still there, but I had felt her leave already. I had felt her squeeze my hand after not being able to acknowledge anyone for days and then I had felt her spirit leave me. 

Our last picture together.

Now, I was laying with her body, still sweating and breathing, but barely. I will never forget that moment in the early hours of January 20, 2004. The way she looked, and smelled and breathed and lived will forever be etched on my soul. I wish that I could remember her voice too, but she had already given up on words. My mother’s voice is like that thing that you can almost remember, but not quite. It sits on the tip of my own tongue and I try to let it out. I try to hear it..and I almost do. Sometimes. Sometimes I hear it in my dreams. But these visits are never the kind that I am so desperate for. They are not the visits from the mother who would hold me and rock me and love me. These are the visits from my mother who was so deeply traumatized that she became the abuser. She chases me in my dreams. I do not fight back, but I do protect myself. I run away or jump out of windows to avoid her swinging weapons at me. Sometimes, she catches me and I can see her wild eyes glaring into mine and she is trying to kill me but I always make myself wake up. Then I can still feel my heart pounding and my voice is screaming in my head, begging her to stop. To love me again. To not hurt me anymore. Both of those mothers existed in real life. I wish my dream world could remember both. 

I never defended myself against these attacks, although I didn’t just stand there and take it either. I would run away if possible and dodge anything she could throw at me. One time, when I was finally almost as big as my mom, not too many months before she died, I grabbed my mom’s fist as it came flying at my head. I did not hit her back, but I did use my newfound strength to hold her back from continuing to abuse me. We crashed into a chair and I used that opportunity to bolt out of the house. I ran all the way to a friends house and pretended that I was just bored and looking for something to do. 

My grandmother found us walking downtown and stopped the car right beside me on the sidewalk. I gulped and gave my friend an “I’m sorry for what is about to happen” look. She had no idea what was going on. I was humiliated by my abuse and never told her, or anyone, what was happening. My grandmother snatched me by the hair and dragged me to her car. She whipped the door open and threw me in the backseat. I might have been almost as big as my mama but I wasn’t even close to as big as my grandma! She lit right into me, saying some nonsense about how my mom called her crying and how she wouldn’t tolerate me beating up on my own poor mama. Well, I opened my mouth to respond and tell her what was really happening when she turned around to face me in the backseat and smacked me HARD across the face. I gave up and just cried the whole way back to my apartment with my mom. I didn’t even have enough fight left in me when I got back to object to my grandma demanding I apologize to my mom. I just said, “I’m sorry” and locked myself away in my room. 

I was not completely innocent throughout this time either though. I know that I didn’t deserve any of that abuse, but I DID deserve some kind of punishment or something. I was convinced that I was trash. That I did not matter and that no one loved me in the world. And so it was that I fell prey to every evil small town America can muster up. Boys and alcohol and drugs were my primary source of pain and pleasure and I was not giving my mom an easy time at all. If she wanted to protect me, she was going to have to stand in my way and I had learned that she no longer could. At some point I simply stopped sneaking out of my bedroom window and started walking out the door. My mom gave up too. I would look over my shoulder and say, “I love you. Good night. See you in the morning.” and she would say it back. No questions about where I was headed or who would be there or how I was getting there. We both just wanted to make sure that no matter what happened, those would be the last words we said to each other. On one hand, because we knew too well that our time together was not going to last and also because I felt like it was a magic spell almost. Like if we always said those words, then we would see each other in the morning and my mom would never die. The night that she finally passed, she was not able to say those words and I chose not to. Instead, I said, “I love you. It is ok to go now. I love you so much mom.” Maybe they did hold a little bit of magic. Who knows. 

I thought of all of this during the weeks of no sleeping that my mom was dying at our home. After her fall, I committed to not sleeping unless the hospice nurse was visiting during the day, so that I could be sure that she wouldn’t try to get out of bed alone again. I remember staring for hours at that little note on the wall above her. D.N.R. I wanted to tear it off the wall so many times. It was such an important piece of paper, but it was just barely taped there. It looked like someone had just taped it up in a hurry because it was crooked and only attached with a tiny piece of tape. But I had fought for my mom to have the right to die at home. I had stood up as tall as I could and looked directly in the eye of the doctor in charge of my mom’s care. He would not discharge my mom without giving someone the discharge orders so that someone would know how to take care of her since she was no longer cognitively or physically able. She really had never been. 

Look closely and you will see the DNR taped above my moms bed. She was only 39 years old.

“Listen, I know you want your mom to go home. If you want that, I need to speak with an adult. Isn’t there someone that you can reach who can come here and get the instructions for her care so that we can discharge her safely?” -The young handsome doctor that everyone in my town seems to love and admire. 

“No. There is no one. There is me. I am her caregiver. I am 17 years old. If I was 18, would you give me the instructions?”

“Yes…I would. I need to give the discharge paperwork to an adult. Not to a child.” 

“I am not a child! I am the one who has taken care of her all of these years! Can I call a relative? Sure! I could call up my grandma or an aunt or uncle, but it won’t be them at our home making sure she takes the right meds or holding her hair back while she pukes or making sure she eats enough and stays hydrated. It will be me! So, you tell me what is safer, giving the discharge instructions to an adult who won’t be there or to a child who will be?”

He looks at me. I think he hears this. I know that it is not only my age that he is weighing the risks of. He has also heard of my reputation. He is close with a parent of one of my classmates. Also, it is a small town so no one is free from their own reputation. What if he sends my mom home with me and I just leave and go out drinking? Looking back I can see that his intentions were probably good, but in that moment, I hated him. I hated that he was adored and I was hated, that he was all powerful and I was weak. That he held my mom’s final wishes in his hands and could stop me from giving her what she wanted. 

“Please. My mom wants to die at home. Please don’t keep her here.”

Finally, he helped me make a plan. I would need to fill out some paperwork and we would need to keep that note in a clearly visible spot that an ambulance crew would definitely see if they were called to our home. And so it was. My mom got her wish to die at home. Over those next few weeks, I panicked more than a few times and pushed the emergency button that would get me a hospice nurse on the phone immediately. I knew there wasn’t anything they could do except keep her comfortable, but I was still terrified of what was happening. I was committed to helping my mom die at home, and I never would have let them take her, so I am not sure what was going through my head when I would slam down on that button. I think I just needed a witness and I needed someone to know that none of this was ok. 

Being with my mom as she died is a sacred gift that I am incredibly grateful for. She accidentally birthed me at home (well in a truck, not in a hospital) and then I intentionally helped her transition out of this life at home. It made sense to me that I would share that moment with her. We had always shared everything. 

A newspaper clipping about my mom’s accidental home birth.

Losing my mom was terrifying for the many years that I anticipated it, but when it happened, it was not scary at all. It just was. After she died, I took one last look at her. I tried to memorize every detail. I knew that it would be the last time that I would see her. She wanted to be cremated. Then I walked to my room, pulled the covers over my head and went to sleep. I have no idea how long I laid there or if I was even really asleep. I know I wasn’t crying. I was numb. I was numb for a long time. I remember “waking up” in my high school English teachers house and realizing that I lived there now and realizing that I had been sleepwalking through my life since my mom’s death.

That morning that my mom died, the local funeral director came into my room. He knelt down beside my bed and pulled the blankets back so that he could see my face. 

“Crystal, I know this is hard. I need you to answer a few questions for me so that we can arrange a funeral for your mom.” 

“I can’t do it. Isn’t there someone else you can talk to about this?”

“Crystal, there isn’t anyone else here. I promise it won’t take long. I just have a few questions.”

“What was your grandmothers maiden name? What year did your mom’s husband die?…” I answered these questions calmly, but with hot tears streaming down my face. I thought of the irony that when I wanted to be considered grown up enough to take care of my mom, the system saw me as a child but when I wanted to be left alone in my grief, it didn’t matter that I was a child. I was the only one there. 

Just a few months later, my only grandfather died and I sat on the porch of my uncle answering all of those same questions again with that same funeral director. This time I screamed at him, “Why are you asking all of these questions again? You know all of the answers! How many of my relatives have you buried? My father, step father, cousins, grandparents! You know this. Are you trying to hurt us?” This poor man was actually a sweet guy just doing his job, and I hope he forgives me and understands that my rage was not meant for him. I was mad at death and AIDS and poverty and drugs and all of the world for allowing my family to  be vulnerable to these predators. 

There is not a day that goes by that I do not wish that my mom were still here. I miss her so deep in my chest. It still hurts to think about. I know that she would have softened in her old age. I tell myself that she would not have chased my children around with knives as she chased me. Grandparents are gentler with their grandchildren than with their children. I know she would have loved my three angels almost as much as I love them. I will never have her back.  But when it hurts the most, when I miss her so much that I can not breath, I let myself close my eyes and remember that day. 

The day she died. and it brings me peace. The early morning hours when it was just us again. Curled into each others arms in a sweat soaked bed. Her hair matted to her face and clinging to my shoulder. Our fingers interlaced as I said goodbye and as she left me. I will forever grieve my mother, but i am also eternally grateful that I got the privilege to guide her to the other side. I am not sure what waits for us after we die, but my mom was a believer in Heaven and God and the Angels and so that is where I picture her now. Singing off tune with the angels and giving my little babies angel kisses before sending them over to me on this side. 

My oldest child on a visit to my hometown, walking toward the alley where I was born. She never met her grandmother, but she stood in the spot where her grandmother gave birth to her mom. ❤

Deborah Lynn Kellner Arnett     8/02/1964-1/20/2004

5 thoughts on “Teenage Daughter-Death Doula

  1. Thank you, Crystal, for sharing your story and giving insight into a life most can not imagine.
    You are so kind and gifted and the humanity really comes through.
    Peace – Carrie


  2. Your writing is wonderful even of a very painful subject. I can so relate to everything you wrote about your Mom passing. My father didnt have HIV, but he was quite ill, wanted to die at home, didnt always treat me with love, and had no one else but me to take care of him. The rest of the family would have left him in a terrible nursing home. I fought very hard to get him home. My boyfriend and I took turns or had to work together to even turn and change my Dad. He was a large man at 6″4 and very heavy from being bed ridden for awhile. He was diabetic and multiple meds. I read your piece and just could feel it all. The smells, holding his hand, memorizing his face and grey eyes open when he took his last breath. Praying hard he did not hear me yell NO to the paramedics when they tried cpr. He had a DNR and i had to make them stop. I had to yell and i hope he didnt hear me and think i wanted him dead. I was exhausted working full time and caring for him. It was SO hard and i was 50. (cannot imagine you so young!) My oldest brother had died just 3 months before my dad of cancer. That is a whole other aweful journey. I have just gone through my own battle of losing my lung to a tumor. Life is hard. You keep living! Anyways back to you! You are NOT alone as i am sure you have found out over the years since she passed. Your children will feel so lucky to have you and break all the bad cycles in the generations and to learn of the grandparents good or bad. Keep writing! Always with love and best regards, Carol Stauffer (Florida)


    1. Thank you for reading and for sharing a piece of your experience with me. ❤ you are right that it is a hard life! But it is also a beautiful life and I am happy grateful to be here and to hear from others out there who are also surviving and remembering. ❤


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