Caregiving Changed Me: One Daughter's Story

Carol and her mom.Agreed denial. That was our little dance — my mother and me — when it came to her health concerns. Her Parkinson's started with a pinky tremor. My adoptive mother — 50 years older than me, widowed, and fiercely independent — was determined to live alone. Then came heart disease, and the Parkinson's got worse. I was preoccupied. I was in my late 30s, married, raising three daughters, the founder and director of a private school in an Atlanta suburb, and my husband worked in another city only coming home every other weekend. Juggling all of my responsibilities usually came down to who needed me the most at any given moment. I worried about my mother all the time.

I started noticing bruises on her arms and legs. Was Mama falling and not telling me? She grew paranoid, claiming someone was trying to get in her house. She crashed into her neighbor's mailbox and got lost going to the store. She looked gaunt and made excuses about forgetting to put the food away after eating or not remembering a cousin's name. I patched together a rotating schedule of caring neighbors, willing church members, extended family, home health aides, but I knew it was time. She needed to be with me — with us — her family.

People asked if we were close when I mentioned we were all moving in together — kids, pets, my mom, two households. I'd smile back and reply, "What's close got to do with it? Do we always get along? Hell no. Will I take care of my mother? Hell yes."

From the day we moved in together, I knew that my mother was much worse than I had allowed myself to see. She froze at doorways and couldn't manage her own basic hygiene. Most of her days were acts of sheer nonsensical repetition. Something else was going on. I knew it before it was diagnosed — dementia.

Mother spiraled. She wandered at night, confused and agitated. She stared into the faces of her family, "Who are these people?" I learned the name for this the hard way — sundowning. She started referring to me as "Little Girl." I asked my family to forego my 40th birthday. I couldn't blow out candles and look into the face of my mother knowing she did not know who I was. I asked my heart, "Who am I if not my mother's daughter?"

Carol O'DellI floundered. We floundered. My children and my marriage suffered. I withdrew, snapping at anyone who came near. I was beyond scared. I didn't know how to do this. Would I have to break that vow? Was my mother beyond my care?

And then it changed. One ordinary day I looked at my mother who no longer knew me and resolved, "You might not remember me, but I remember. I remember you. I remember us. I will tell our stories."

Caregiving changed me. I did not and could not go back to the person I was before. I am someone different. I have new plans and new dreams. I am not who I was, and I am not who I will be.

I've learned to pace myself. I've learned that guilt, anger, resentment, and frustration will eat you alive. It's easy to get caught up in the drama and trauma at hand. If you pour yourself into those you love without taking the time to sleep, laugh, walk, call a friend, vent, or do simple things like read a magazine or watch the birds outside your window, you'll find that you're empty and have nothing left to give anyone. 

I've learned to be a strong advocate for those I love. I've learned to ask for and insist on the community support my family needs because doing it solo is just plain stupid. I've learned that our elders, children, and the poor and marginalized need us to be their voice.

Carol D. O'Dell is the author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir. Carol is a contributing editor for Caring.com and teaches for the Osher Lifelong Learning Institute program at the University of North Florida. Visit Carol on the web at www.carolodell.com

For resources and more information on caregiving and caregiver stress, please read our Caregiving and Caregiver Stress sections.

The statements and opinions in this blog post are those of the author and do not necessarily represent the views of the U.S. Department of Health and Human Services' Office on Women's Health.