After a year of working in my home and watching my son, a homecare nurse melted down and terrified both my son and me. My son shook petrified and pleaded with her to stop yelling. Unable to remove her from my home, I had to call the agency to tell her to leave. Homecare nurses are overworked, underpaid, under-trained, and families like mine are suffering.
We have used home care nursing services for my son on and off his entire life. Choosing to welcome staff into my home was not something I came about lightly.
For more than two years, I attempted to care for my son on my own. Somehow I found a way to juggle his more than a dozen doctors, numerous medications, a feeding tube, and his heart disease. However, without help, I began drowning.
I couldn’t keep up with his needs. Everything in my life revolved around him. My life became so entangled and enmeshed with his pain and suffering that my mental health and happiness disappeared.
Desperate for help, I reached out to our county social worker. Together she assisted my family in obtaining services and finding nurses for our home.
After a few months of bringing the nurses into our home, our family found a rhythm and harmony that we hadn’t had in years. My husband and I could go out on dates. During the day, I was able to write and manage my social media. Lunch and coffee dates with friends became normal.
For the first time in years, I felt a weight lifted off my shoulders. My son had people that cared for him and managed his illnesses. After five years of living in our home, I was able to unpack our last boxes and organize. Our life had been on hold for such a long time that relatively easy tasks were left undone.
Then the honeymoon period wore off. Soon I had to manage personality conflicts between my son and the nurses. Most of my day was spent playing referee between the nurse and my child. Once a compliant and happy child, my son became defiant and resistant anytime his nurses needed to give him medications, vent his g-tube, or feed him.
Instead of a peaceful home, my home became filled with rage from my son. My son is autistic and struggles with adapting to change. Nurses that came into our house were not trained to care for a child on the spectrum.
The lack of training and inability to communicate effectively with my son created meltdowns that exploded like a raging volcano. His face would become beat red, veins popped out along his temple and neck, and he started getting violent.
These were not typical temper tantrums of a six-year-old child.
No, once my son entered this sphere he became violent and incapable of rational dialogue.
He kicked, punched, and threw his toys around the house. Running from room to room, he slammed doors and beat on his walls. He screamed, stomped his feet, and clenched his fists when he tried to communicate his needs.
At first, the dramatic, violent episodes were sporadic. We dealt with a meltdown only a few times a week. However, by a year into our nursing services, he was melting down every day.
We worked with doctors to find ways to manage his emotions, and he started on medication to help his ADHD. Even with the drugs and behavioral work we applied, his anger was still out of control.
By the end of each week, I found myself completely drained. All week I would listen to my son yell and scream at his nurses. I found myself unable to work without interruption, and I became resentful of the nurses.
On more than a few occasions, I took my anger and frustration out on my husband. Lashing out about the way the nurses communicated with my son, I found myself moving through emotions that ranged from blubbery tears to what felt like steam boiling out of my ears.
Weekends in our home were always peaceful. My son had a nurse he adored and who didn’t fight with him. We were able to spend time as a family.
Sundays were always the most pleasant. On the single day of the week that no one came into our home, our son didn’t raise his voice. We didn’t fight with him about anything, and there were no scary, violent outbursts.
After a few weekends of calm, I started to realize that the nurse my son lovingly referred to as “his honey,” was the source of his outbursts.
He only behaved that way when she was in our home. The only other time he acted like that was with another nurse we had to terminate.
Quickly, I realized that his behavior escalated to violence because anytime he acted out she gave him whatever he wanted. If he wanted her to play but she was busy, he threw a fit. When she needed to provide him with medications, he exploded violently to prevent her from giving the meds.
Everything she needed to do work as a nurse, he pushed back on. Instead of holding her ground with him, she gave in to his demands. For a year, she spoiled him with attention to a fault. He learned that anytime he exploded that his “honey” would give him what he wanted.
When I made the connection, I tried to change their relationship. I provided the nurse with techniques to manage and work through my son’s outbursts. We discussed not bending to his demands. Firmly, I told her that she needed to establish boundaries with him so he would respect her.
Initially, I tried to model the proper way to diffuse the situation. I remained calm, ignored the behavior, and firmly stuck to whatever request I made of my son. Through the work, my son stopped fighting me.
Unfortunately, her attempts to extinguish the behavior only further fanned the flames of my son’s rage. She struggled to remain calm. Within days, I started to hear her yelling at my son. Soon her behavior escalated from being easy going to arguing with my son about everything.
Her fights with my son started about the most mundane issues. One day she didn’t want to be a room he wanted to play in. The two of them fought for hours as she screamed and told him she can’t be forced to sit in a small room all day.
She said my son held her hostage and unable to work. Through her frustration, she raised her voice at my son and me. When I diffused situations and tried to calm my son, she accused me of not taking her feelings into consideration.Then came her complaints about nearly every aspect of her day. She didn’t want to be in his room or the guest room. Her polite demeanor became demanding and abrasive. Her own needs started to supersede my son’s care.
For weeks she threatened to quit if we didn’t control our dog or make her environment safe. We worked tirelessly to manage our dog’s behavior. But her dark and aggressive demeanor made our dog nervous. Our sweet foxhound puppy barked at her aggressively anytime she approached our son.
After a month of questionable exchanges and a dramatic change in how she treated my son and me, I knew she was burnt out. What I didn’t realize was that she was so burnt out that it would turn into a dramatic explosion that left my son crying and me begging an agency to remove her from my home.
Her language towards me was abusive and disrespectful. She spoke so loudly my son placed his hands over his ears and begged her to stop. I told her to leave. She refused to leave my home. Eventually, I had to call the agency to remove her from my house.
My son was left sobbing uncontrollably and unable to understand her anger. He begged me not to be mean to his nurse. However, he didn’t realize mommy wasn’t mean – she was trying to protect her son. Now my son lost his “best friend,” and I can’t explain to him how this happened.
My son will never understand that a nurse I brought into our home to care for him verbally abused me and my son on a daily basis, and I complicitly allowed it because we had no one else to watch him.
Homecare nursing is not easy. These nurses work long hours for very little pay. They need to blend in with families, manage family dynamics, and care for a child. None of that is easy.
I have tremendous sympathy for the sacrifices these men and women make to help their clients. The massive staffing shortage for homecare nurses in our country is leaving nurses working 50-80 hours a week to cover the needs of the agency.
Because many of the nurses are working too many hours, families are left with a staff that is fatigued, quick-tempered, and unable to cope with stress.
Agencies are spending their time trying to keep nurses from quitting, recruiting new nurses, and putting out fires in homes.
Without time to properly train staff and manage the needs of the families, many agencies are unable to retain nurses. As a result, families are left without help.
If I could go back in time, I would have probably terminated the nurse months before. However, there are no nurses to fill her shifts. Therefore firing her from home means we have no help. I kept her on much longer than I should have because she was the only option I had.
Nurses burn out. Families become stuck with the staff they either don’t like or don’t fit their needs because of the shortage.
The shortage in nursing is driven by the fact that baby boomers are aging and need more support in their homes. However, there aren’t enough staff to cover the number of clients. Additionally, the wages that nurses make in homes are considerably less.
According to payscale.com, the average salary nationwide for a home care registered nurse is $26.00 an hour. In a hospital, an RN can make anywhere from $29.00 to $35.00 an hour on average. When you can make nearly $10.00 more an hour without having to deal with the stress of working in a home, most nurses pick hospitals and clinics.
Medicaid and Medicare control the pay rates that home care nurses can make. In some states, Medicaid pays only $9.00 an hour for nursing. What nurse do you know that will work for $9.00 an hour?
Yesterday, my son and I dealt with the ramifications of the nursing shortage. We had a nurse blow up and scream. She scared us both and left my son shaking and heartbroken.
Do I think she’s a terrible nurse or person?
No. I believe she is burnt out and unable to cope.
Our country needs serious changes to our health care system. We need better reimbursement rates for home care nurses. Until that happens, families like mine are left picking up the pieces after a previously amazing nurse burns out.
My son and children like him deserve nurses that are well-paid, well-rested, and well trained. We don’t have that now. I’m not sure we ever will.
*Katie Joy is a columnist and hosts Without A Crystal Ball on Patheos Non-Religious Channel. She writes articles on parenting, disability advocacy, debunking pseudoscience, atheism, and crimes against women and children.
She co-hosts the YouTube show, “The Smoking Nun,” with Kyle Curtis. The show airs weekly and tackles pseudoscience, current events, and crime stories.
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