Caregiver Reflects on 14 Years of Caring for Her Mother

Kathy Barnes-Lou devoted 14 years to caring for her mother before she passed away. Through this experience, she discovered that caregiving can provide a profound sense of purpose, even as it takes a toll on one's well-being.

In the United States, nearly 25% of adults are currently caring for aging or chronically ill family members or friends, often without a national support system for elder care. As a result, many caregivers, like Barnes-Lou, manage these responsibilities largely on their own.

As she describes her role, Barnes-Lou states, 'As a caregiver, you're an advocate. You're the person that cleans the home and orders the meds, gets the supplies, and schedules doctors' appointments.' Her mother, who had Parkinson's disease, lived with her in Memphis, Tennessee, until her death last year.

During the decade of caregiving, Barnes-Lou had to forgo much of her previous life. She reflects, 'Caregiving is so difficult. Even on really good days, it’s just difficult because you’re leaving behind relationships, careers, income, pensions, retirement. All of that I'm leaving behind.'

As her mother's condition worsened, the job became a full-time endeavor. 'Probably the last four years of her life, she was bedbound in a hospital bed here in our home,' Barnes-Lou recalls. 'Everything happened in those dimensions, which is, like, 80 inches by 36 inches. That is her world, and I became such an intimate part of that world.'

Like many family caregivers, Barnes-Lou did not have outside assistance, relying solely on her husband for support. Each day, she would start by preparing her mother’s medication, greeting her with love, and helping her eat.

In addition to personal care, Barnes-Lou had to acquire skills in physical therapy and medication management, essentially becoming her mother's private nurse. 'She had a wound that I had to care for and dress and keep clean,' she explains. 'Some people may never have the opportunity of changing sheets while someone is lying in bed. That is completely dead weight, and you’ve got to learn how to navigate that, how to move them safely while getting soiled sheets off.'

To maintain her mother’s flexibility, Barnes-Lou moved her limbs every couple of hours, often becoming physically drained. Despite her exhaustion, she kept her feelings hidden from her mother, focusing on the love that motivated her care.

Despite the burdens of caregiving, Barnes-Lou found satisfaction in her role. 'I knew—when I shut that door—that she was in an environment where she is beloved,' she said. 'That translates into me as well. I get a sense of peace and comfort knowing that I'm providing this for my mother, even though it is stripping me of my physical resources.'

Her mother passed away in April 2025, and Barnes-Lou continues to cope with the emotional and physical toll of caregiving. Yet, she remains resolute about her choices during that time, stating, 'I wouldn’t change anything. I would never change this experience, and I would do it all over again. I would sign right up.'