It was an autumn morning in 2018 when my phone rang in Washington, D.C., and I’ll never forget the sound of Mama’s voice on the line. 

She was calling from her home in Virginia, 100 miles away. Her voice, normally warm and sweet, was instead rife with anger.

“Who took the knobs off my stove?!” she demanded. My heart broke toward her. All she wanted was to fry herself an egg for breakfast.

  

How could I tell her that her four adult children had met and decided to remove the knobs from her kitchen stove? We made this decision to protect her safety, as her doctor had informed us that she was in the early stages of dementia and we could no longer allow her to cook on an open range.

How could I tell her that the stove where she had for decades lovingly cooked all of our family’s favorites during the holidays was now off limits to her — forever. Her fried chicken, mac & cheese, sweet potato and apple pies would only be tasted in our imitation recipes.

Hearing her angst, I responded in what I thought was the best way possible at that time in order to avoid traumatizing her. I’m sorry, but I lied. I told Mama that the stove was broken and that my son, her grandson, Monte, had removed the knobs temporarily until he had time to fix it.

That did it. She slowly calmed down. After all, in her eyes, Monte could do no wrong. We advised her to start heating up frozen meals in the microwave instead.

As the disease progressed, it was not long after that difficult conversation that we made another sacrificial decision.

We knew that Mama could no longer live alone. Period. We sought professionals in home care. But that assistance was limited.

I resolved that the love that she had bestowed upon our family all of our lives was enough for me to upend my life in order to now take care of her. So, I moved 100 miles outside D.C. to become her primary caregiver for as long as she needs me. For me, it required commuting to my home and business in D.C. often and assuring that she is never alone.

It’s a decision that thousands of family members around the country are making every day.

An AARP article reports that particularly African-Americans have a sense of community and culture when it comes to caregiving. For me, it was pure love.

I moved in just as COVID-19 hit. Thankfully, neither Mama nor I caught the virus during the pandemic. Still, it was almost impossible to protect her from an injury related to her instability on her feet from Alzheimer’s. In 2019, she fell and broke a bone in her back. In July 2020, she fell and suffered a fracture to her hip for which she had surgery. Last year, she suffered a hairline fracture in her lower leg, climbing into a van to go to church.

Now, five years since I became her primary caregiver, Mama, an award-winning Gospel singer, is now 90 years old and wheelchair- bound. Singing in churches since the age of 7, she doesn’t sing publicly anymore, but the joy that I have some evenings listening to and watching gospel videos on Youtube with her can never be replaced. I love dressing her up and taking her to places and events she enjoys, like church, community gatherings, and even the funerals of close friends and relatives.

Throughout the journey, I have learned so much about this disease that is often emotionally painful to the patient and to the caregiver — regardless of how devoted. Here are just a few of my lessons learned that I feel are worthy of sharing with others:

I’ve learned to savor every beautiful moment. Sometimes Mama looks at me and asks me my mother’s name and I tell her. But most of the time, she teases me and calls me, Hazel, the name that she and my Daddy gave me. I treasure every sweet moment.

I’ve learned to speak words of love and kindness to her, and exude patience even when I’m tired and frustrated. Know that despite how much you love them, you will sometimes become tired and frustrated.

I learned how to avoid traumatizing her. In her illness, Mama sometimes asks about people who died a long time ago as if they are still alive. I used to tell her that person died years ago and even argue with her when she disputed me.

But then I realized it was like repeatedly breaking her heart with the news. Now, I just say that he or she is not here right now or something akin to that. Pretty soon, she moves on to something else.

I’ve learned to spend quality time with myself. Self-care is crucial for the caregiver. Attend an event that you enjoy. Take a vacation. Go shopping or just for a walk. I’ve learned to ask for help from people that I trust, or accept it when they offer.

I learned that there is a lot of helpful equipment to prevent injuries to myself and to Mama. And a lot of it is free of charge from community organizations — wheelchairs, wheelchair ramps, Hoyer lifts, gate belts, transfer slides, portable commodes, shower chairs, etc.

I’ve learned how to say no. Some people may not understand your dedication and commitment to the care of your loved one. Sometimes you must be emphatic that you just can’t do something that others want you to do. I’ve learned to talk to her and answer her back, even when I don’t understand what she’s saying.

When I first realized that I would be moving in with Mama to take care of her, I didn’t know how it would be possible. I just did it based on my faith in God that he would help me work it out. It turns out to have been one of the best heart decisions I ever made.

The writer is the founder of Trice Edney Communications.