It can be easy for caregivers to forget about their own needs. But one of the most important things caregivers can do is to take care of themselves. November is National Family Caregivers Month. To honor and celebrate caregivers, we’re sharing one woman’s story. We encourage you to share this with the caregivers in your life.
One phone call was all it took for Robin’s world to be turned upside down. Her mother, Gail, had just spent 2 weeks helping Robin and her husband, Kevin, take care of their newborn baby, Charlie. Then a few weeks later, they learned that Gail had acute myeloid leukemia (AML).
Gail had chemotherapy to treat the AML, but it didn’t work. The AML came back. That’s when Gail’s doctors said a transplant would be her best treatment option.
Here’s Robin’s story, in her own words, about her experience as a caregiver and how she cared for herself.
New family roles
“When my mom was diagnosed with AML, Charlie was just 7 weeks old. We went from the high of having a new baby and my mom being a nana for the first time to to what we call ‘THE PHONE CALL.’
There was never any question that I would be my mom’s caregiver. I knew I would be there for her just as she’d been there for me. My mom moved in with us, and it wasn’t always easy. One of the biggest challenges was the shift in roles within our relationship.
We very much had the traditional parent-child relationship, and that changed overnight. It was really hard for both of us. It wasn’t easy for me to tell my mom, ‘No, you can’t do that.’ It was just as hard for her to ask me for help.
It was also hard for me to push her to do things sometimes. For example, my mom didn’t want to meet with a registered dietitian because it was ‘just one more appointment to go to.’ But nutrition after transplant is so important. I struggled with all of the food safety precautions, not to mention her changing tastes.
When we finally met with the dietitian, I thought, ‘That would have been so helpful 6 months ago!’ I didn’t want to make my mom feel like a child by insisting we make the appointment, but it would have saved me so much time and frustration.
Time to recharge
Throughout the transplant journey, Kevin kept reminding me to take care of myself so I could be the best mom for Charlie and the best caregiver for my mom. It was easier said than done. For a long time, taking care of myself was vegging out at the end of the day and watching a really bad reality show on TV! It took me a long time to be okay with that. Sometimes I felt like I’d failed because I wasn’t ‘making time for myself.’
Then, I realized that while I might not have been taking a yoga class, I was doing things for me. Spending an hour hanging out on the couch with my mom or lying on the floor with my son doing tummy time … that was awesome. Now I’m to the point where I can set aside time to go out with friends or exercise, but at the time I just couldn’t do it.
While the transplant journey hasn’t been easy, there have been many positives along the way. My husband and my mom have gotten very close, and it’s been fun to watch. I didn’t think it was possible, but my own relationship with my mom has gotten closer. Seeing what my mom has gone through has made me appreciate everyday things so much more.
As a caregiver, the journey ahead of you won’t be easy, and sometimes it may seem like there is nothing to be happy about. But, there is always hope. There is good that will come out of this. You might not see it today, but it will come.”
Your sense of self
As you care for your loved one throughout recovery, the following questions can help you be mindful of your thoughts, feelings, and actions:
- How has my life changed — for better or for worse?
- What new goals would I like to set for myself?
- What steps can I take to begin working toward my goals?
- What can I do each day to take care of me?
- How can I balance my role as a caregiver with other parts of my life?
More information for caregivers
- Get support and resources to help you take care of yourself while also caring for your loved one.
- Watch as caregivers describe what caregiving was like for them, and hear patients share what their caregivers meant to them.
- Visit the Caregiver Action Network to find out more about National Family Caregiver’s Month.