Living with a disability comes with many challenges. One of those challenges is finding a capable caregiver. My condition doesn’t allow me to do anything for myself, which is why I need a nurse. My doctors recommend that a nurse helps me for 16 hours a day.
Why I Need a Nurse
I need a nurse to stay overnight to monitor my breathing, position changes, and check on my G-tube feedings. The nurse starts her shift at 6 P.M., to get me ready for bedtime. We start with physical therapy, a shower, and start my overnight feeding. I get positioned for a comfortable night of sleep and go on my BiPAP vent. I usually don’t sleep well at night and wake up many times.
Most of the times, finding a nurse is not as simple as it sounds. The idea of having a capable nurse means that my parents, who are on call 24/7, can get some rest without worrying about me because my nurse handles everything. Well, they’re supposed to…
The Challenges of Finding the Right Nurse or Caregiver
For the last 3 years, every single nurse we have been assigned has not been capable and has not stayed with me. In this case, the phrase “it’s not me, it’s you” applies. Trust me, taking care of me is actually quite simple if you are a trained nurse who knows their nursing ABCs. I have had 34 nurses in three years and you may be wondering why.
Almost all my previous nurses haven’t cared for me properly, even after hours of training from my parents. The training isn’t 100 percent about how to take care of me. that part is around 30%. The other 70% is on how to operate the vent, feeding machine, and other various equipment that I use.
The Trouble with Night Shift Nurses
During night shift, my nurses tend to fall asleep, so they obviously don’t turn me every two hours. They don’t check on my vent or my feeding. When I wake up in pain and call out, my parents come to my rescue because the nurses are snoring. Sometimes, they forget to turn on the humidifier in my breathing machine which makes the air I breath cold. This causes mucus which is the reason I am on the vent to begin with.
This doesn’t happen all the time, but when the nurse does come when I call, they are half asleep. They make so much noise at night that my little brother gets woken up in his room across the hall and doesn’t get enough rest either. Being woken up so abruptly also affects me. I am unable to concentrate in school the next day. Those are just some of the situations that I have been through during the night shift.
Day Shift Nurses in School
When it comes to the daytime, although I am awake and can communicate better, it is still difficult for the nurses to care for me. Let me tell you some of the situations that I experienced during the day shift. Before COVID-19, I attended school in person and I had a nurse accompany me. Here I was, independent in my Quantum® Edge® 3 Power Wheelchair and trying to fit in at a new school. One day, the nurse fell asleep in science class and she rested her hand on my wheelchair. This was a disaster! As she dozed off, her hand fell on my joystick, and I went flying forward. I drove straight into a row of tables, pushing several students forward while crushing my knees, shin, and feet. I guess I can forget about making friends! The tears falling from my eyes were not only because I was in excruciating pain, it was also because I was so embarrassed. I would have crawled into a hole if I physically could! The only thing stopping me was my disability. At the end of the day, I had huge bruises on my knees and legs.
Day Shift Nurses and Caregivers in the Home
Accidents weren’t limited to school. At home there were many reasons why my nurses left. One flooded the bathroom, causing the flooring to fall through the ceiling of the room below. They fought with my mom, complained about how I was rude and their commute was too far, just to name a few. Many don’t speak English. I’ve been burned in the shower, dropped during transfer, and hurt more times than I can count. There’s been so many other incidents where the nurses left. It’s been so hard to find someone who can properly care for me.
It may seem like I’m writing a letter to Mary Poppins. In reality, it seems impossible to find a good nurse. So, if the perfect nurse is out there somewhere reading this…Hi, I’m Sakina. Can we be friends?
About Sakina Shamsi: Sakina lives in New Jersey with her parents and brother. Although she has spinal muscular atrophy type II, Sakina lives a full and independent lifestyle. She is active in the disability community and enjoys horseback riding, baking and crafting. Click here to learn more about Sakina.
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