How Being a Caregiver Taught Me To Pause and Take Care of Myself

November is National Family Caregivers Month - Take Care to Give Care

by Annecy Baez, Ph.D.

     I was a caregiver once, about seven years ago when my husband was diagnosed with Stage 4 colon cancer. It’s been five years since his passing, and the experience of being a caregiver was as difficult as it was rewarding, healing, and life transforming.

     The theme of this year’s National Family Caregivers Month is Take Care to Give Care. As we honor all social workers ‑ as well as spouses, parents, children, neighbors, friends, and co-workers ‑ for their compassionate caregiving, I would like to share my personal experience with the hope that it helps others to take a pause. Taking a pause and caring for oneself both strengthens the self and one’s ability to care for others.  

     My husband, a clinical social worker who dedicated most of his life to HIV/AIDS, was a compassionate presence for families who lost loved ones during the AIDS epidemic.  He understood illness and the process of dying. At the time of his illness, he worked as a senior grants officer at a local community college. He loved his job and the people he worked with, and he was also a volunteer running coach.  I had never seen him happier.

     At the time, I was working as a director of counseling at a local college, where my role was both administrative and clinical. I dealt with multiple emergencies, mostly depression and suicidal ideations. While at home I was dealing with the eventual prospect of my husband’s death, at work I was helping students stay alive, to see that their lives were worth living and that they made a difference and had something unique and valuable to offer the world.

     For some time, I sat quietly in this experience of living, dying, and caregiving - a caregiver both at home and at work.  Once, after a crisis, a public safety officer asked me, “Who takes care of you?” Even now after five years, I remember his question when I am overgiving and overworked.

    As a caregiver, I noticed one day how hard it was to pause and care for myself.  If I rested, I felt I was not caring enough. I felt I was not strong enough to deal with the challenges life presented. Then, one day, I realized that to pause really meant I cared for myself enough to care for me, and that in doing so I was able to care for him.  My 21-year-old daughter, who was a senior in college, became my primary support, giving me time to take a break.  Slowly I went back to doing the things I loved that made a difference in my life.

     First, I embraced my role as a caregiver and scheduled time for me. I learned to ask for help, and to accept it when it was offered. I ate well, and I took care of my body through yoga and my spirit through meditation.  I sat in the backyard of my house and meditated under the sun. Quietly, I would stretch, breathe in and out, and open space for acceptance of my experience of fear, loss, and grief. To embrace all of the emotions surfacing within me allowed me to be in touch with all that makes me human.

     Mastery activities helped, too. On Friday evenings, I reviewed my week and organized healthy meals. This grounded me. Cooking did, as well, and I included him in this process. I scheduled time with friends, and when I couldn’t go to them, they would come to me. I wrote in my journal about what I was learning about life, how caregiving was opening new spaces within me to be in the world in a way I had never been before - more open, expansive, and accepting.

     Art had been a part of my life through poetry, creative writing, and mixed media collage. It was healing and relaxing. So, I carried my notebook with me to draw, or to write poetry and stories of my experiences. When he became sicker and we began hospice care, my art room became his room, and he would say, “Create something for me,” because he knew art was in my heart, and that it gave me time to pause and be kind to myself.

     I also took time to go online and seek support through the many wonderful online resources available for caregivers. Memorial Sloan Kettering provides a variety of online and phone resources for caregivers.

    I created a CaringBridge website, an interactive site that connected my husband and me to our loved ones. I uploaded photos and updated family on his condition.

    Caregiving changed me. I learned to manage what I could control and sit in the paradox of what I could not. I learned to be more focused, disciplined, and persistent. I learned to concentrate on the things that matter, and let go of what did not. I found my voice, and myself.

     And it was this journey that led me to teach social work, where I could share my clinical and personal experiences with students who will one day be supporting caregivers or become caregivers themselves. They, too, will learn to take time to pause and care for themselves as they navigate the journey of caring for others. 

Annecy Baez, Ph.D., is an Associate Professor in Clinical Social Work and Director of the Latino Social Work Initiative at the Graduate School of Social Work, Touro College & University System.

For more information on caregiving and National Family Caregivers Month, visit the Caregiver Action Network.