By: Anjanette Anderson, MSJ

November was National Family Caregivers Month. Caring for a  loved one  who has a disability or a chronic illness can be quite worthwhile, let me tell y’all...  

Over the past few years, I've juggled working a full-time job and being a full-time student, friend, girlfriend, etc., you name it. However, the most stressful and rewarding role I assume is being a caretaker to my mom. I’ve lost count of how many times I've slept on emergency room benches or those uncomfortable hospital chairs, rode in ambulances, missed work, neglected myself and loved ones to ensure my mom was being well taken care of. I lost sleep and, truthfully, I'm still losing sleep since she’s been sick. 

This all started back in December 2015 when she complained about her left side hurting and, later, complaining she could not feel anything on that side. My immediate reaction was “She is having a stroke!” I checked her blood pressure, which was normal. A couple of hours later after leaving the doctor’s office, things started to spiral out of control. She went from limping on the left side, to not feeling that side of her body, to completely losing her sense of ”touch” throughout her body. This was the very tip of the iceberg. This is when I was introduced to the concept of health disparities.

Truthfully, I didn’t know much about health disparities for Black women until I saw it firsthand. I may not have had statistics or known the intricate history of health disparities for Black women, but I knew what I saw very well. When I rushed her to the hospital, I saw a lack of care that was disgusting and explained repeatedly that a perfectly healthy woman can’t feel anything from her waist down. I immediately took it upon myself to be her (codependent) caretaker. I was paranoid. I was worried sick about her and visited her every day after she was admitted. 

Visiting her was dreadful, but I went and made sure I wore my job ID (hospital ID) even if I wasn’t working to constantly ask questions to make sure my mom was being seen or heard. I’ve seen firsthand how neglected patients who don’t have visitors or have a caretaker are so quickly neglected. Although I showed up all the time, it still wasn't enough to demand the quality care my mom deserved. They simply didn’t give a damn. I continued to visit her every day, getting angry at her and God that she wasn't getting better.

When I said these healthcare professionals didn’t give a damn, I meant they lacked basic empathy and didn’t offer further explanations of side effects for prescribed medications they would recommend. They minimized her symptoms constantly. I'll never forget visiting my mom one Friday and asking her why she’s coughing up blood, only for her to tell me that her doctor said it wasn’t blood but remnants of cranberry juice she had been drinking. I was already annoyed because it was evident that there was blood and I was concerned about her shortness of breath and her high heart rate. Disclaimer: I have no clinical experience but my family is filled with nurses and I worked for the Nursing Administration, so I’m able to put two and two together. And that’s the thing, I wasn’t able to make sense of these symptoms. I googled symptoms (I know we are not supposed to do that because it will drive us insane but what else was I supposed to do?). The results of my search showed that she may have pulmonary embolism! She was in a nursing home at that time because she still couldn’t walk. Her nurse bypassed what I was saying and told me I’m not a nurse. I decided to take matters into my own hands and called an ambulance myself. Luckily, I got her into the hospital at the right time because the nurses confirmed what I had suspected, but they clarified that it was bilateral pulmonary embolism and that both of her lungs were filled with blood clots. After that diagnosis, I was told to plan her funeral because she had a 5% survival rate. This was a result of not taking my mom’s concerns and symptoms seriously from the very start. They chose not to pay attention to her “cough” or lack of movement involving a range of motions. News like this did not help my anxiety, so I began to monitor all of her medications for years to follow as well as ask for random reports of all her blood work.

Fast forward to the present, she's here, but because of that pulmonary embolism and lack of communication, her lungs haven't fully recovered and she needs assistance. She's currently hooked up to a ventilator to help her breathe. If I don't speak up, only the Lord knows what will happen. I think it is so important to advocate for your loved ones especially Black women. 

I'm sharing this story for other caretakers/caregivers because writing this out is therapeutic for me. Speaking of therapeutic, it is so important to prioritize your mental wellbeing, especially if you are a caretaker. It’s hard to share with your loved ones when you  are not okay, but it is so important to build a network of support for yourself so you aren’t alone. You can't pour from an empty cup. So, prioritize your mental wellbeing by speaking to others about what you’re going through or finding a support group online for people in similar situations.

Truthfully, I am still learning, especially in this pandemic. I’ve gone from visiting my mom every day in a healthcare facility to not being able to see her at all because she’s a high-risk patient and there are many restrictions. Some days are better than others, but I'm reminded of those simple things I can do to help me push through as well as my faith; without God, I don't know where I'd be.

Anjanette Anderson is part of our very own HIHH team. She is a Healthcare enthusiast in both her professional and personal life. She has a passion for healthcare professionals providing the best quality of care for patients. Her strong love and admiration for patient advocacy comes from her personal experience of having to advocate for a loved one.