National Family Caregivers Month: Survivor Turned Caregiver

As a glass-is-half-empty person and adult only-child, I did not take my mom’s cancer or its return a couple of years later very well. Though she was in her 80s with a different type of breast cancer than I had in my 40s, it felt like we were doomed to walk back and forth across both of our graves. I knew my role as her caregiver would be very different than my role as patient and survivor. Here is what I learned as I transformed from a survivor to a caregiver.

Follow the patient’s lead. As a patient and a survivor, it is important to ask and articulate what your needs are as you go through the process. As the caregiver, I learned to get better at drawing out and tuning in to Mom’s needs. “Barb, button it,” was something I said internally many times. This was followed by “Barb, listen and observe.” Not all of Mom’s cues were verbal ones.

Listen and ask questions and listen. The treatment choices to be made were her choices to make, not mine. This was one of the most difficult things for me. Mom chose a lumpectomy the first time and a double mastectomy the second time. She did not choose to have radiation or chemotherapy either time. In my forties, I chose to fight cancer aggressively with chemotherapy and radiation treatments. As a caregiver, though, it was my job to respect Mom’s decisions even though I could feel my heart breaking each time.

When asked, choose your words carefully. When Mom asked me what she should do, each time I told her, “I would do the treatment because I am young. I don’t know what it feels like to be you, at your age with your other health issues.” Honestly, it was hard to get those words out of my mouth, even though it was the right thing for me to say. I did not have the right to take her choices away from her and it was painful for me to handle it that way.

Do your best and don’t second-guess yourself. All anyone of us can do at any moment in time is try our best, knowing that our best is sometimes faulty and limited. My mom passed away from metastatic breast cancer this June—the cancer appeared on her skin across her chest and it also had formed an inoperable tumor in her brain. Would she still be here with me if I had “pushed” her into more treatment? Or, would she have died before June of this year from treatment complications? My mind goes to these dark thoughts but I try not to linger there. Don’t stay in that dark place. Just do the best you can each moment.

Finally, take care of yourself. This is common knowledge but difficult to do, right? What does it even mean? I took it to mean to continue to spend time with family and friends when I could and to continue to pursue my passions when I could squeeze them in. I also took it to mean that at the times I was too sad or worn out or stressed, that those were not the best times to be with Mom—for her sake as well as for mine.

What happens when the caregiver’s role ends? My heart is broken. I am still working on this one. Regardless of the reason caregiving ends, I think it is important to take some time to take a break. Postpone important decisions for a while if you can. Give yourself the gift of time to figure out what “new normal” looks like for you. Take a moment before just creating busyness to fill the empty time. You deserve time to sort things out. God bless all the caregivers.