When we envision growing older, many of us seem to think that our health will decline gradually over a long period of time, giving us months or years to get used to the idea that we need a caregiver. In the same way, we assume our adult kids will have plenty time to adjust to the idea of caring for us – or finding someone else to act as our caregivers.
The reality, however, is far different. Millions of families find themselves thrust into the role of giving or receiving care with little or no warning. That was the situation journalist Jaya Padmanabhan found herself experiencing, a situation she describes in this NextAvenue article. As you read about her experience, put yourself in her shoes. It will hopefully cause all of us to take the idea of planning for future care needs a lot more seriously.
A Fall, a Hospital Stay, and a Sudden Change
Padmanabhan begins her NextAvenue article with this poignant scene: “A few days before Christmas in 2019, my 86-year-old mother became increasingly confused about why she could not get up from a hospital bed. Repeatedly, she asked me to tell her what had happened. My brother and I spent our days observing the medical staff at El Camino Hospital in Mountain View, California, as they administered frequent tests and even more regular doses of medicine to her. We took turns at night to sleep on a pullout chair-bed beside her.”
Her mother had been admitted after a fall, which had caused an unclear number of pelvic fractures. Physicians could not agree: one said seven, another said three. Regardless, it was deeply concerning – and profoundly life-changing.
Padmanabhan writes, “In the days that followed, my mother and I realized that our lives had changed significantly. She needed help, and taking care of her physical and emotional needs was now my responsibility.”
A Parent’s Needs Trigger a “Humbling” Change of Status
Padmanabhan continues her article with a similar story, this time about a Florida man named Delrish Moss who provides care for his 75-year-old mother. Up until her recent stroke, Moss had served as the police chief of Ferguson, Missouri, but he left this job in 2018 to move to Florida and care for her full-time. Moss called his caregiving role “very humbling” and “outside of the training” he was used to.
Moss and Padmanabhan are part of a very large cohort of caregivers. “In 2019,” Padmanabhan writes, “according to the National Alliance for Caregiving (NAC) and AARP, at least 38.9 million people — like Moss and me — provided informal and usually unpaid care and support to adults in the United States.” About two-thirds were born between 1946 and 1980 – Boomers and Gen X adults.
She adds, “Moreover, as I came to realize, caregiving is an amorphous experience, which the 2020 Rosalynn Carter Institute for Caregivers report (RCI) identifies as ‘not defined by specific tasks or the amount of time spent.’ This makes it difficult for people to understand what’s involved and how to navigate the emotional and physical labor involved.”
The Initial Challenges Hit Without Warning
Padmanabhan finds deep connection between her experience and Moss’s, especially since both of them had no prior warning that they would become caregivers until it happened. “But as Moss put it, ‘nothing teaches like the doing,’” she writes. “He had to learn to help his mom with daily tasks, take her on doctor’s visits and assist her in dealing with her mental health issues,” something Moss called a “big learning curve.”
It was difficult at first for his mother to accept Moss’s help, especially with bathing and dressing. She was a bit shy, a bit “appalled”, as he puts it, but with patience they got through it. The biggest challenge, according to Moss, was trying to help his mom “reconcile to new realities.”
Moss said, “My mother displayed a lack of awareness of the permanence of her condition,” because in her mind, it was “just a setback.”
Padmanabhan writes, “In my case, one of the things I learned in a hurry was that there was no getting off the treadmill of caregiving once you climb on. And for my mother, it was initially tough to accept help since she was so used to caring for others. Those first days, I coped by taking cues from my mother on how to provide care. The sequence in which she preferred to put her clothes on, how she liked her coffee, when she wanted the drapes drawn, how she liked her pillows arranged, and how to steady her on stairs.”
Living Multiple Lives, Juggling Burdensome Responsibilities
The workload, stress, and strain carried by any given caregiver is often referred to by experts as “intensity”, and a 2020 study on this intensity found that caregivers often carry multiple identities, providing “long-term care for loved ones in their roles as spouses, partners and children. The conflict between career, caregiving responsibilities and family needs place higher levels of burden on the caregiver.” It’s a never-ending juggling act.
Speaking of juggling, Padmanabhan adds, “As an empty nester, I was back to juggling care and career, finding myself distracted both ways —while providing care and working.”
In another similar real-life account, Dwayne Hodges took care of his ailing mother long-distance, all while trying to handle a divorce and maintain shared custody of his children. As a result, Hodges found himself flying from New York to South Carolina every six weeks—when his children were with his ex-wife – “to take his mother on doctor’s visits, buy clothes and groceries and attend to her needs. In this way, he managed to be her primary caregiver (remotely and in person), parent his children and continue to earn a living. He did this for five years,” Padmanabhan writes.
Living in the Same House is a Mixed Blessing
Is it easier for caregiver and recipient to live in the same house? In some ways, yes, there were benefits and drawbacks to being in close proximity, according to Padmanabhan. She writes, “Having my mother at home allowed me to engage with her meaningfully, listen to music, watch her favorite TV show, reminisce about her youth, and help her with puzzles. But this convenience also made me hyper-focused on her.”
Research backs this up. One study published in 2022 in the International Journal of Environmental Research and Public Health (IJERPH) looked at the intersection between physical proximity, emotional attachment, and caregiving burden. The results? That “informal caregivers are at risk of caregiver burden, and physical proximity to the care recipient may add to this negative outcome.”
Padmanabhan adds, “In addition, the researchers found that caregivers with high levels of emotional anxiety had a higher caregiver burden when they lived apart from their care recipient. That was somewhat true for me. While I learned to be efficient with my time, separating from my mother emotionally proved challenging. I had to take myself out of my mother’s physical orbit to change my caregiver identity.“
It was especially hard during the pandemic, she admits. But once lockdowns were lifted, going to cafes and driving to work provided both reprieve and some guilt.
Deep Despair Blends with a Sense of Commitment
“It is well-established that caregiving has positive effects,” Padmanabhan writes, “including contributing to personal growth and a sense of purpose in life. That keeps many of us going, despite the burden.”
Moss agrees. He had many sweet moments with his mom while caring for her, despite the setbacks. What mattered were the “heart-to-heart conversations and getting to know each other fully all over again.”
Padmanabhan concludes, “Caring for my mother took a great deal out of me, and I often despaired at my situation. Yet, in quiet moments, I felt a sense of deep commitment. On the occasions that I found her happy, whether at the sight of turkeys running through the backyard, the family dog licking her hand, or cooking her favorite meal, I found contentment, too. That held me together in the days, months, and years before her death in August, 2022.”
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(originally reported at www.nextavenue.org)