Caregiver Voices

I am Laura and I was my mother’s caregiver.

Through my talented husband’s hands, he built a “casita” on our home property, a one-bedroom cottage where my mother could live independently when we found she could no longer manage the stairs in her two-story home.  But shortly after she moved into her little casita, my mother was diagnosed with vascular dementia plus other inoperable, degenerative physical ailments and I became my mother’s primary caregiver. Two years ago, as I was starting to struggle with my role as a caregiver, I found the University of Texas at San Antonio’s School of Nursing Learning Skills Workshop.  I brought along the newly hired part-time caregiver that I had just hired to assist me in my caregiving role.  We were also fortunate enough to experience the Dementia Tour Simulation program that was invaluable to understand what the dementia patient experiences.  Both the Learning Skills Workshop and the Dementia Tour Simulation provided us both with the tools we needed to provide the best care for my mother in her time of need.

Looking back on my experience as my mother’s caregiver, the best part was that I was honored to walk that final path with her to the end of her life. It was not always easy, as she grew frustrated and anxious about her decline, she would lash out to the one who was the closest to her, and in this case that was me.  Many times, I found I just needed to walk away, take a deep breath, and just remind myself that she was angry at her situation and not necessarily at me.  Joining support groups for caregivers of dementia patients and being a part of the UT at SA Caring for the Caregiver Advisory Council were the two things that helped me in my role as a caregiver.  Through these two, I was able to learn and share with others who were either in the same position or understood the struggles that come with being a caregiver for someone.

Early on I learned the importance of self-care and self-compassion as I took on this caregiving role.  I hired a part-time caregiver to come in a few hours every morning to help with the housekeeping, laundering, and cooking so that I could have some time for myself.  I learned that taking long walks and doing yoga through Zoom helped me clear my mind and kept me healthy, especially during Covid when it was not necessarily safe to go to gyms and studios. I learned that journaling helped me to express myself.  I had a dedicated journal that was devoted specifically to my mother where I would write to her my wishes, my struggles, and my frustrations when I knew it did not serve me to express to her directly.

After 65 plus years, I must confess that this role as my mother’s caregiver was by far the hardest thing I have ever had to do.  But I also know that it was also the most rewarding thing I have ever done as well.   I recently heard someone speaking about being a caregiver for their loved one and they advised those in the same role to “lean into the honor of walking your loved one to the edge of their life” and that resonated so much for me.  I was reminded of this quote so many times, especially in the last several weeks of my mother’s life.  My mother passed away peacefully on April 24, 2021 in her casita. On one of her last days when she was still verbal and she and I were alone, she leaned over to me and all she said was, “thank you Laura, from my heart”.  I knew what she meant, and I was honored!

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