Rebuilding a life after a high-level spinal cord injury is never easy. For Cassandra Brandt, a single mother, and daughter Ella Haley, America’s worsening caregiver crisis forced them into a situation no family should have to face.
by cassandra brandt and haley james
Reading: A mom’s sacrifice news car accident
cassandra: The summer my daughter and I were 13 and 32 years old, our lives were swept beneath us, and we had to struggle to adjust to unimaginable change.
I was a single mom preparing for college at night and welding by day. I wanted to be a writer and I was passionate about politics; I wrote poetry and petitions. I enjoyed my solitude and loved going on walks, and I loved being the fun mom: shopping, weekends at the beach.
She was a seventh grader from a small town, a vegetarian with a passion for animals and the planet, having fun with her best friends, and becoming increasingly thoughtful. she was coming of age, and we were living on the path to my structural steel career.
then I was the passenger in a car accident that crushed my c4 vertebra, leaving me a quadriplegic. after the accident, we moved back to my hometown.
haley: When I got the phone call saying my mom had been in an accident, I fell to my knees and gasped for breath in panic. I will never forget looking up and seeing the helicopter that took my single mom to another city. when I saw her again, she was hooked up to what seemed like dozens of machines.
I had never seen my family feel so sad and helpless. I felt it was my duty to be strong for them, to allow them to cry on my shoulder. I did my crying in the comforting presence of my dog or in the isolation that the shower provided. When the doctor told us that there was a 95% chance that my mother would never regain her lost function, I felt as if a dark shadow had crept over my family and invited itself into our hearts. I realized that everything was going to change.
cassandra: After a couple of months in rehab and in a nursing home, I was determined to get back into my life any way I could. I learned to write with my mouth and drive an electric chair with my head. it was vital for me to keep my daughter close to her and continue to support her. that kept me going as I began to adjust to this new life.
Even though I’d had a good career as a merchant, my disability checks didn’t cover much more than rent. I tried to employ caretakers. the state paid for 40 hours but only $12 per hour. some friends took the job, but no one was trustworthy. there was no opens in a new window any caregiver agency in my rural hometown. My parents weren’t in a position to help either, I only had my daughter and my brother. had been living out of state, but rushed home after my accident.
For the first five years, the three of us lived together. my brother exhausted himself in my care during the first two tumultuous years. most of my care fell on my daughter. she would wake up with me at night, get me ready for the day in the morning and she would stretch my arms and legs every day after school. my life revolved around the stress of who would come to wake me up or put me to bed, or if I would have to ask my overworked daughter.
“Managing parenthood is hard enough, especially during adolescence. my daughter and I got through it like a contestant who falls off at the start of an obstacle course but somehow manages to make it to the end despite being out of control and bouncing off everything.”
haley: Although my uncle did most of my mother’s care early on, he constantly forced me to do chores. he was very demanding and would become verbally abusive if he didn’t do things exactly to his liking.
My mom was barely conscious these days, often just waking up to watch a movie with us every 24 hours. she might still be a kid at school, but she dreaded the weekends at home. things had gotten so bad that I started hating myself and started self-harming.
When I was 15, I helped my mom for about two hours every morning when she didn’t have school. At the age of 16, I began taking care of all of my mother’s care on my own, except for the occasional caregiver.
I finally stood up to my uncle, but by then it was too late to stop the piling up resentment I felt towards my mother. my patience had run out and my mother and I argued often. I felt like she didn’t care about me like mothers should and she just wanted to have me around to use me. I thought that she always put herself first because she had to base all my days on taking care of her. she had no energy and had a lot of back pain.
When I was 17, I switched to an alternative school. going to school all day and still being able to attend to my mother’s needs was too difficult and time consuming. I didn’t see the point in trying to get good grades. I felt like I would be taking care of my mom for the rest of my life and wouldn’t have time for a career.
cassandra: Allowing my daughter to take over all my care is something I deeply regret. she sacrificed and endured so much, and our relationship suffered. she worried that moving to a nursing home would make it impossible for me to help my daughter, and she wouldn’t have a consistent, decent place to stay. I told myself that we were taking care of her, a statement that perhaps annoyed her because she hadn’t really taken care of her in a long time. I bought what she needed and usually what she wanted. I kept a roof over her head and fed her. I helped her with homework. I advised him about boys. sometimes he still took her to the movies, to concerts, and to the river. but she brushed my teeth and washed my face. she combed my hair, wiped my butt, dressed me, hand-fed me, stretched my arms and legs, woke me up at night for me, dropped out of school for me, and canceled plans for me.
haley: Unable to express her love physically, my mother struggled to show her love for me. she developed problems, drank too much alcohol, experimented with other drugs, and hung out with boys who didn’t respect me. When I got pregnant at 17, it felt like a rainbow of love and meaning had swept over me. I was finally going to feel and give love in a healthier way. after years of fearing the future, he had one to look forward to.
When I miscarried, my mother tried her best to be there for me and take care of my emotional well-being, but I was depressed. drinking became an everyday thing. my mom was also depressed and she felt like a failure as a mother. she saw her staring into the distance, wishing things were different. I cried because of her pain. he longed for her embrace.
cassandra: often my daughter felt like she was being selfish. she lashed out at me: partying, drinking with guys, and rebelling. she was sacrificing so much, her grades suffered and she lost her ambitions. she was crying out inside for a break, for hope, for a future, and I was denying her that. my guilt led me to depression.
He never refused to take care of me. she might have had an attitude, she might not make me get on or off precisely when I wanted to, but she never made me suffer or neglected my needs. my care took hours every day. usually he did it diligently, if wearily, and we talked or listened to music or books to pass the time. she did it exhausted many times and drunk a few. sometimes we were both crying.
trained one caretaker after another. sometimes they didn’t even come back the next day, taking advantage of my daughter, knowing that she wouldn’t leave me hanging. she would often wait for them until noon and then tell my daughter that she needed her after all.
separate ways, new hope
cassandra: at 18 and 37, my daughter and I separated. she had seen it coming from her because she planned to go to college and he was determined not to hold her back from anything. however, it happened more suddenly than we expected.
I never wanted her to choose between taking care of her mother and her son, so when my daughter got pregnant again, I started looking for group homes, and my daughter and her boyfriend started looking for their first place. all the group homes had waiting lists, so I called skilled nursing facilities and was finally accepted by one. It was the first summer of covid and I could only receive visitors at my window.
haley: I had sacrificed a lot to keep my mom from going to a nursing home, but it was happening anyway. I cried myself to sleep when we parted ways. I felt as if all the effort to keep her living in her own house had been in vain. I was so mad at myself. my mom didn’t deserve this.
The day before she went to the nursing home, we found out she was having a baby. The news brought us a lot of joy during this difficult transition.
cassandra: my daughter brought our dogs to see me and showed me her baby bump through the glass. we watched movies together pressing play at the same time. it was difficult to get timely and comprehensive care in the understaffed nursing home. I missed my daughter’s efficient hands. I missed having someone who loved me taking care of me. most of all, she missed her company. still, it was a great relief to think that he was no longer a burden to her. she wouldn’t have called me that, but living in the nursing home made me even more aware of the magnitude of her sacrifice.
After two months I was admitted to an assisted living home and a year later to a private room in a great group home.
haley: My mom and I no longer argue, which allows our hearts to work on healing from the damage our relationship has suffered. we plan to always live close to each other, and I plan to always help my mom while still having the life I want. A few years ago, I would not have imagined that we would both become more mentally stable, happy and working towards our own goals.
I admire my mom for being stubborn, passionate, silly, rebellious, polite, and a hard worker. I hope to continue with those qualities. she pushes me to fulfill my dreams and encourages me not to give up. she still helps me in any way she can, whether it’s talking to me when I need someone or helping me with shopping. she is my best friend, my rock and the best mom I could ask for.
cassandra: My daughter and I started online college and set our goals high. she has a little boy on her hip and the title to the first house of hers. I am grateful every day that she has a good man to help her survive without me. she has a good head on her shoulders, but i want you to love her and take care of her. my daughter is an amazing mother as she knew she would be. the hands that diligently cared for her for five years now care for her sweet child. though they still care about me. she works weekends in my group home.
I miss sharing a roof over my head, but it feels amazing knowing I’m no longer a source of stress for her. there is still trauma to process and guilt to work through. I feel like I let her down sometimes, like maybe being together wasn’t worth what I caused her. I wish I had done a lot of things differently. I should have dragged her into therapy. At the very least, I never should have made her feel slighted. I imagine the crushing weight on her shoulders and wonder if she ever just wanted to scream.
I am so proud of her, who she is, what she has done for me and the person she is becoming. she’s a tough cookie. when I think of value and resolution, I think of her.
I know I will always cherish the thousands of mother-daughter conversations we had in the most unconventional mother-daughter situations during my daughter’s adolescence. Every day of my life I’m glad I didn’t die in that crushed car and I’m still by her side today. at 39 and 20, today I am a better mother, and she is my closest and dearest friend.