November 3, 2021

My Life as a Care Partner: A Perspective by Diane Kennedy

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Diane Kennedy

November is National Family Caregivers month, a time to recognize and honor family caregivers for the challenging roles we hold in helping loved ones navigate medical crises. I am honored to share my experience as a care partner, as well as some tips and strategies for coping I’ve learned along the way.

The past four years of my life have been an emotional journey full of ups and downs.

In December of 2017, Todd, my husband of 28 years at the time (now 32 years), began complaining of pain in his back. This triggered an MRI that revealed cancerous lesions up and down his spine. Soon after, he was diagnosed with multiple myeloma, a currently incurable form of blood cancer. At first, I felt overwhelming sadness, which evolved into a strong fear of losing Todd and being alone. After the initial shock subsided, I went into “warrior mode” and put my emotions aside to focus on finding Todd the best possible cancer care.

Todd used to call me his “caretaker,” or “caregiver,” but I never thought those terms truly captured my role in Todd’s cancer battle. We have since landed on the moniker “care partner,” which is a better term for how we work together to become more educated, empowered advocates for Todd’s care.

Care partners like myself often do not have a choice but to go “all in” during the period just after diagnosis. There wasn’t time to do anything other than focus on Todd, his disease, and where to get treatment–but, at the same time, there was pressure to manage all other aspects of life at work and home, including new responsibilities I took on for Todd.

Thankfully, this was just during the initial adjustment phase, and I emerged with strategies and tips to share with anyone on the same journey:

  1. Remember, this process won’t last forever. Have grace for yourself and learn to accept that you can’t do it alone. Others want to help you, communicate what you need – and let them help.
  2. Communicate the changes in your capacity at work and at home as you move through the diagnosis and treatment process. This will reduce stress and give you back some time in the day.
  3. Do something physical. Going for a walk each day helps me be a better care partner! At first, I saw this as self-indulgent, but the physical outlet and fresh air reduces stress, helps me stay positive, and gives me space to process.
  4. Find a support group and talk with other care partners, either in a group or one-on-one setting. It’s comforting, reassuring, and empowering to connect with a community and know that you are not alone. Your doctor or nurse may be able to put you in touch with other care partners, or you can find support through one of the many amazing patient advocacy groups.
  5. Remember that you are ONE member of a robust, expert care team. Find the best doctor and care center available to you, and trust in their guidance. Letting go of the expectation that you need to be an expert is liberating.

Today, Todd is in remission, but we understand that myeloma is a long road. We continue to track his status with regular checkups and minimal residual disease (MRD) testing to monitor his remission and any signs of relapse. We are living our lives to the fullest regardless of the cancer. Last year, we both retired to redirect all our time and energy to advocating for blood cancer patients. Our work as coaches and advocates is incredibly fulfilling.

To all the other care partners out there, I want to let you know that your work does not go unnoticed or unappreciated. Cancer is a long, grueling journey but it doesn’t rob you of your personal power. By taking care of yourself and advocating for yourself and your loved one, you can take back control of your life.

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