My Initial Thoughts As A Caregiver

Just before my mom was diagnosed with COPD, I was living in Central Florida working my dream job, at Disney World. Every day I was busy making guests laugh and doing my part to make their trip incredible.

A new level of problems

Back home my mom was dealing with a new level of problems. She’d had health problems throughout my life, but the breathing side of things had been getting increasingly worse. One day she called me and asked me to come home. I remember she said, “something is just not right.” I reluctantly left my job, after only a year. That was in the Spring of 1996, and by the Fall of 1997, she was diagnosed with COPD.

Mom had multiple cases of bronchitis as I was growing up. The cough that would come with it usually took half of the year to subside. She had endured many surgeries during my childhood, so we considered her poor health more related to the surgeries than breathing. When she asked me to come home, I had many different emotions. I was an immature, young adult, and to me, it seemed that she just wanted me to come home because I was far away. I was only a year into a job that I had dreamed of having, and now I had to leave it. You see, I was not always understanding.

I remember initially having questions about what this disease would do to her. Would she die? Would she be able to live without oxygen? She had an uncle with emphysema, and I remembered visiting him, near the end of his life. That was the only point of reference that I had for what she might be dealing with.

I didn't really understand at first

In the beginning, I honestly did not know what to do for her. She seemed normal. It was almost as if nothing had changed for her, just a new name to call this thing that she had been dealing with. There wasn’t very much information on the internet about COPD, and what I did find was not filled with hope or encouragement. There were times that I ignored what she was going through because it was easier than thinking about it. She wasn’t complaining every day, so I could imagine that it must not be that bad. When she said that she didn’t feel like doing something, I wondered why, but I really didn’t understand.

I imagine that there were times that she had concerns about her family (including me) not understanding what she was going through. Even as I was learning about this disease, there were times that I did not grasp the weight of what she was carrying. That did not come until much later.

Bravery and listening

There was a time early on that I asked mom if she was scared. Looking back, I can see just how incredibly brave she was. She reminded me of something back then that was so full of wisdom, yet so simple. She said, “Tonya, we all die of something.” That simple statement gave me a sense that she would deal with it, as she had dealt with so many other things. Her statement given with her witty smile reassured me that this diagnosis would not cause her to quit. It was something that needed to be worked through.

Beyond how COPD would affect mom, I wondered what it meant for me. I didn’t understand what a caregiver really was at that point. In the early years of her journey, I was in the middle of different crises in my own life and had very little mental capacity to wrap my head around what she was going through. It took time to process what COPD was doing to her.  

I had to be able to really listen to her, beyond her words, to know that when she said, “I’m just having a bad day.” It really meant, “I am having an incredibly hard time breathing today. I can barely walk to the kitchen without needing to sit down.” It took time for me to hear beyond the words and know that she didn’t have the breath to keep the conversation going, but she wanted so desperately to just listen to me.

Enjoy every moment

I wish that I had known in the beginning what I learned in the last five years. It takes life experience to get to a relationship like we had, and unfortunately, some of those experiences were much more than we could have handled in the beginning. This is how I can tell you to live every day to the fullest. Enjoy every moment.

I look back on that day in May when mom called and asked me to come home. Now I can say that I have no regrets in leaving that dream job. Jobs come and go, but time with someone that you love cannot be replaced.