Can Someone Pass Me Life’s Handbook?

In my mom’s life, I am more than a caregiver. I became one at a time when she needed me the most. It was a role I willingly stepped into but never understood fully.

Being her eldest daughter can be tough, and what mother-daughter relationship isn’t? By nature, it was never meant to be a walk in the park, but what happens when you add a chronic illness?

My mother and I battled with the idea often. The truth is that being your mother’s caregiver is extremely challenging. My mother did not stop working when her health began to decline. As the main provider, she had to be strong for my sister and me.

No one expects to spend their life traveling to and from the hospital. We realized she had a long road ahead of her. We naturally feared the worst. Thankfully, when we are honest and face our fears, we can begin to transmute them into gifts.

Caregivers have the opportunity to see the patient at their weakest. They act and respond when the patient needs an advocate. It can be difficult to see one’s mother hooked up to a dialysis machine or experience multiple infections and refuse medical care. I always erred on the side of caution because the waiting game made me nervous. However, we are all autonomous individuals, and my mother was in charge of her own care until proven otherwise.

The hardest times were when she refused medical care. My initial reaction to her refusal was always a long speech about why we should take our health seriously. However, in the Black community, it is not uncommon for people to be wary of hospitals and doctors.

My mother is one of many that have received improper care from her doctors and surgeons. She lives in a reality where her autoimmune disease is her life, dialysis consumes a third of her week, and doctor visits are more often than she would like. Not wanting to rush to the doctor may seem like she’s downplaying her situation, but I now understand that no one is ever prepared for this change in life.

At the beginning of 2015, my mother experienced her first infection from in-home dialysis. By May of that year, she had experienced her second. Before rushing to the hospital, she exhibited signs of a fever and nausea, followed by vomiting. While she complained about pain in her stomach, my mind raced a mile a minute.

Seeing my mother sick for the majority of my life caused me to constantly overthink, and to this day she considers me a hypochondriac. However, that day I was right. As soon as her skin color began to have green undertones, I called her dialysis nurse.

Once I explained my mom’s symptoms, the nurse advised her to go to the hospital. I can remember the look my mother gave me. Seeing into her eyes was like seeing into the future: It was a future filled with endless hospital visits and pain. You could tell at that moment that my mother was shocked, and maybe even a little scared.

The drive to the hospital was quick, and her admittance into NYU Langone in Midtown Manhattan was quicker. During this hospital visit, they replaced her stomach catheter. She stayed in a stuffy room and hated every minute of it.

I put on a brave face and made sure the house was clean before she came home. However, on the inside, it was hard to deal with. I battled with victimizing her and judging her daily.

Trying to help the people you love may look different throughout the years. I never expected that I would have to step up and become more for my mother at such a young age. Her role was to protect me, and in repaying her, I try to be strong and make wise decisions.

My experience as her caregiver is very interesting. I have to listen a lot and make space for my mother’s feelings. I’ve had to remind myself often that working with rare diseases is a hard burden to bear.

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