Six things I wish I had known as a caregiver

There is help. As the primary caregiver for my husband and two sons, the errands and to do list felt never-ending. It was a very heavy load emotionally and spiritually. While at City of Hope Chicago, a nurse asked me, “How are you doing?” No one had asked me that question, and I began to sob. From this experience, I began to humble myself when I got back home and began asking for help whenever it was offered—whether it was my cousin or the teachers at my kids’ school.
Cancer isn’t singular. It’s plural. Cancer doesn’t just impact the patient. It impacts the whole family. Our boys were only 7 and 11 when my husband was diagnosed. As parents, we wanted to protect our sons from the unknown and worry. Despite that, kids are smart and figure things out. They began to exhibit signs of anxiety and distress, too. During our second visit, a gentleman saw my son’s meltdown and pulled us aside. He said something that changed our lives: “Your kids have cancer, too.” We were so taken aback by that statement. He then explained that when he was diagnosed years ago, his whole family fell apart in a terrible way. He wasn’t the only one affected by cancer—his whole family was. My husband began to cry, because it validated how he felt but couldn’t put into words. This man shared that not only do adults need breaks from cancer-related stuff, kids do too. From that point on, we never said Rob has cancer or Rob is on a cancer journey. We say, “We have cancer. We are on the ‘C’ journey.” We began family meetings with the boys to answer questions, better understand how they were feeling and receive feedback. We also began counseling sessions for both boys.
Keep a journal. At the beginning of our journey, I wish I had written everything down and been more organized. On our first day, we received a binder with all the information we needed. It was a great help, but I also brought a notebook and wrote everything down. That way, we could review the material together later and have a better understanding. I kept a list of doctors, numbers, family members, medications, anything and everything—even our hotel room number! That helped me to not stress about memorizing anything.
You can never ask too many questions. If you have a question or you don’t understand something, ask your care team. If they don’t have the answer, they can help find the right person to help. Deepen your understanding of everything going on in your life and don’t be afraid to advocate for yourself. The more you understand your treatment, cancer, medications and so forth, the stronger you become.
If you treat at City of Hope Chicago, check out the cafeteria. We all eat, and most of us find comfort in food. The big question for a family is, “Where do we want to eat?” The answer we most commonly hear: I don’t know. As a mom, I was concerned when we traveled for treatment. I cook homemade dinners, and my son is on a special diet. I didn’t want us living off fast food. Our first time in the cafeteria was awesome. I was so surprised at all the good, healthy food we could eat and how helpful the staff was.
Take care of yourself. Remember: You’re not alone. It’s OK to ask for help. It’s OK to share how you’re really feeling when someone asks. It’s OK to fall apart once or a million times. You’re so appreciated. You may not hear “thank you” for all you do, but trust me—the people you’re caring for are so grateful to have you. Have faith and have hope.

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