I write as an insider. I write as someone who has lost mobility, personally teetered on the edge of life and death several times, and has spent time in nursing homes and rehabilitation centers – as inpatient and outpatient. I write as an insider and a trained journalist who has stayed at six nursing homes and physical rehabilitation centers, and seven hospitals, a period of 26 years. I developed mobility issues from a benign spinal cord tumor in 1995 and have experienced ups and downs in working to regain strength and to walk again. Three times I’ve had to learn to walk and it’s been an incredible journey, to state the obvious. I have had to learn to do everything all over again – several times – from writing my name to typing, dressing, showering, eating, turning over, balancing, standing, walking and, once, talking.
Even though I lost control of bodily functions and felt helpless at times, I never lost my faith or my strong mind. My son Carey told me once, “Mom, use your mind. You’ve got a good one. Your body will catch up.” I certainly had to remember that and keep it in the forefront when, following months of recovery in 1995 from an 11-hour spinal cord operation in Morgantown, West Virginia, I returned to work to lead the television staff. It was especially important in 1997 when I relocated to Athens, Ohio, where I was back on my feet when I applied for the position of general manager of the station walking and started the job three months later in a wheelchair. “Use your mind.”
Although regulated by state laws, the quality and standards of nursing and rehabilitation facilities vary. It wasn’t until a neurologist in Columbus properly diagnosed my issue as Neuromyelitis Optica (NMO) and regulated the medication that I stopped having so many health reversals.
I have experienced harrowing events over the course of the past 26 years – an 11-hour laminectomy (the removal of a portion of the spinal canal roof) and removal of the spinal cord tumor that precipitated it, paralysis, extensive rehabilitation, falls at home, a transient ischemic attack (TIA/mini stroke), mobility issues, low potassium, the NMO, plasma exchanges by the Red Cross, two life flights, three blood pressure falls (40 over 10, 50 over 20, and 48 over 20) when my normal pressure was 116 over 67, intensive care several times, blood transfusions, medicine transfusions, high white blood cell counts, feeding tubes, sepsis (life-threatening organ dysfunction triggered by infection), gall bladder removal, kidney stones, bleeding on the brain, urinary tract infections (UTIs), three pressure sores (one almost infected my coccyx (the tailbone at the base of the spinal column), and a femur break when I bent over trying to put my shoe on.
How one gets better depends on the degree of love and support – family, church, friends, and community, plus personal motivation. It was definitely all of those for me,
Early one morning in 2018, while wrestling with God over why I wasn’t progressing as quickly as I thought I should and why I was in my sixth facility rather than in my home, I clearly heard, “You’re the journalist, there’s purpose. Write the story. ”What?” I said. “Write the story.” Yes, I am an insider who happens to have mobility issues and who also happens to be a journalist. I am an insider who, while healing and undergoing therapy, observed, participated, and listened. Then, I was inspired and compelled. I interviewed. I researched. I wrote.
A Scary Proposition
It’s scary. You think about it. “As I grow older or become disabled,” you contemplate, “who will care for me and what will be the level of that care?” “What will happen to my home and to my possessions?” “What will be the cost?” “How will I pay?” Much is written and discussed about nursing home care. The statistics are staggering and what we read and hear about most skilled nursing homes are the negatives. Not all stories, though, are heartbreaking: some are lifesaving. Love. Others express abject sorrow. Loss. I find it difficult to understand family members who abandon their loved ones, especially those who live close to a facility and don’t visit or contact their people. It’s close to criminal. Others don’t bother to call. Perhaps it is fear of their own mortality or even guilt. I’ve watched the loneliness, lonesomeness, and the rapid demise of people who have no contact with family. It’s a rapid downhill decline.
This book illuminates personal stories and provide examples of the underpinnings of nursing home structures. I never experienced or saw physical abuse, although I know it occurs. Close to verbal abuse? Yes. There are a variety of ways one can be abused – staff not answering a light, leaving a resident in distress; staff refusing to assist a colleague with a resident; malnutrition, or staff withholding service from a resident they don’t like. I pointed out to an aide that a resident lashing out is usually not about the aide but about the person’s frustrations, although I firmly believe what poet Maya Angelou said, “Even when I have pains, I don’t have to be one.” Displacement from one’s familiar surroundings into a foreign environment is disorienting and causes confusion. Therefore, residents retaliate verbally and sometimes physically to express unhappiness with the living situation. However, staff must be kind and compassionate or find another profession.
Indeed, abuse is prevalent in myriad nursing homes in countless ways. In addition to narratives of love and loss, I offer “insider’s” advice for policy and practice, and the significance of having an advocate and advocacy. Caring must be intentional in the wider framework of nursing and rehabilitation. I have frequently said to a caregiver, “Treat residents as if each was your favorite grandmother or grandfather.”
The hub and happy place for any nursing home is the activities program. I delve into the dynamics of Bingo, volunteers, and therapy dogs, with focus on the importance of listening physicians, caring nurses, attentive aides, focused therapists, activities, cleanliness, and dietary quality. All are woven throughout the tapestry of narratives.
What’s included are true, both my own lived experiences and first- and second-hand, accounts of love and loss gathered through interviews with residents and/or family members, and health care providers. Love and Loss is a compilation of my “insider” experiences, and others, in several facilities.
Excerpt from Love and Loss: The Storied Nature of Nursing Home Care by Carolyn Bailey Lewis, PhD Published by Permission: Monday Creek Publishing. Love and Loss: The Storied Nature of Nursing Home Care is available through Amazon.
The book includes a review by Dr. Patrice Harris, MD, MA, FAPA, Co-Founder and CEO, eMed, and former president of the American Medical Association, and Bluefield, WV native says, “ As a physician I know the power of the personal narrative as an educational as well as an advocacy tool. In Love and Loss: The Storied Nature of Nursing Home Care, Dr. Lewis takes us through her journey with nursing home care – the pain and loss and highs and lows. Her truth telling is searing, sometimes sorrowful, but necessary. Her intellectual honesty will help lead us through uncomfortable, but important conversations. Her story is ultimately one of love and hope and healing and will help us navigate a path forward.”
Dr. Carolyn Bailey Lewis is a Bluefield native whose maiden name was Foster. Her great aunt who raised her owned and operated Hotel Thelma and Restaurant and Traveler’s Hotel on the East End.