Dr. Carolyn Lewis gives voice to the voiceless with her new book ‘Love and Loss: The Storied Nature of Nursing Home Care’

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“Love and Loss: The Storied Nature of Nursing Home Care” (Monday Creek Publishing) by Dr. Carolyn Lewis is not only a poignant, much-needed contribution to the ongoing dialogue about nursing home care in the United States. For Lewis, writing and publishing the book was a deeply personal act of cultivating the seeds of fulfillment and purpose in the rocky soil of immense difficulty and pain.

Written over the course of the past four years, “Love and Loss” combines the voices of those who have received care in nursing homes with accounts from their family members and care providers – all framed by Lewis’ firsthand experiences in six different nursing homes and physical rehabilitation centers over the past 26 years. The result is a volume bursting with open-hearted, thoughtful (and perhaps most importantly) practical considerations of the sorts of specificities one should consider when faced with making decisions involving nursing home or rehabilitation center care — whether for themselves or a loved one.

In 1995, a benign tumor in her spinal cord completely paralyzed Lewis. Needless to say – the development was life changing. Lewis is an accomplished journalist, and at the time of the diagnosis she was the general manager at WNPB-TV in Morgantown, WV – a position that made her the first black woman in the continental United States to lead a public television station. Only in her 40s at the time, Lewis underwent an 11-hour surgery to remove the tumor.

Lewis would continue her career after the surgery, going on to be the Director and General Manager of WOUB Public Media for 13 years. However, Lewis said the intensive surgery did not completely allow her to permanently regain her mobility.

“About every four or five years after that surgery, I would lose my mobility again. I would struggle, and have to return to rehab to get back to walking again,” she said. “I had to be life-flighted several times. A couple of times I had sepsis, and bleeding on the brain. I had a feeding tube for a time. So many things happened to me over those 26 years. About four years ago, I was in a rehab facility after a stay in intensive care. I looked at the ceiling and I said, ‘Lord, what?’ And I just heard so clearly: ‘you’re a journalist, write the book.'”

Love and Loss

That’s precisely what Lewis did. Drawing from her years of experience and training as a journalist, she truly became a voice for the voiceless.

“In many of these places so many people have dementia. They don’t know who they are, who their family members are. Many of them cannot speak anymore,” Lewis said.

Lewis, who was only in her 40s at the time of the surgery, would often feel out of place in the facilities she stayed in while regaining her mobility.

“I’d be in activities or trying to put little pegs into holes to get my mobility back in my fingers so I could write and type. And I’d look at 80 and 90-year-old people in therapy and in rehab and in facilities and say: ‘what am I doing here?’ But I realized that was a part of being an insider journalist,” she said.

As a “curious insider,” Lewis said surprise visits to loved ones in nursing homes or rehabilitation centers are vital to get a real perspective on what life is really like in a facility.

“You have to visit, and you have to make surprise visits. You can schedule a visit to go — but most of the nursing homes are open 24/7. So just go in there and see what it smells like, what it looks like, how the people are being treated, how they talk to the residents who are there — at all times,” Lewis said. “You need an advocate. Whether it’s a friend, a family member, a relative, or a neighbor, someone who can just pop in and see how you’re doing — morning, noon, night. That’s what my daughter did for me. It got to the point where staff would ask me: ‘when is your daughter coming?’ And I’d just say, ‘I don’t know,’ because I really didn’t know — she would pop in sometimes at three in the morning just to see how I was doing.”

Lewis said that it is very difficult to predict what a facility is going to be like unless you’re actively visiting it at different times of day.

“Every place is different. As I started research for the book — and even based on my experiences of the places I’d been in, I’d been in some that were spectacular, but the food was awful. I’d been in some that were filthy and you’d be in a room with two or three people — but the food was great and the service was great. I’d been in places where they had plenty of staff and then some where it was really scarce to find someone when you put your light on.”

Visits are not only important for ensuring that loved ones are getting the care they are supposed to be receiving. Lewis said visits from friends, family members and neighbors are also essential to nursing home care residents’ general health and wellbeing.

Lewis was in a nursing home at the beginning of 2020, when the COVID-19 pandemic broke. Suddenly, those living in nursing homes could not receive any visitors – and Lewis saw the impact of this firsthand.

“I’d never seen so many people diminish so quickly because they couldn’t see their family members or their friends,” she said. “My son came to visit, and for two months, I didn’t get to touch him. Because it was the height of COVID. I could only see him out the window. It was just a hard, hard time for people. Especially for people who couldn’t understand what was happening — people with dementia who were used to seeing their family almost every day, it was very hard for them not to see them. They just didn’t understand.”

Although we all know that serious injuries are by no means uncommon and that we are all in bodies that often radically change without asking for our consent to do so – it’s complex and downright scary to talk to loved ones about what the plan should be if one day they no longer can care for themselves. Regardless of how difficult that conversation is, Lewis said it is essential to define these sorts of plans with loved ones before you’re forced to.

“It needs to be talked about early on because it’s a subject that’s avoided. And then when it hits, it’s ‘what do we do and how much this is gonna cost?”

Over the course of her academic career, Lewis taught many international students, who she said have a very different relationship with the concept of nursing home care for aging parents as opposed to Americans.

“They would tell me that it was their goal to come here and make money so that we can go back home and take care of their parents. They would never think about putting their parents in a nursing facility — unless it was for rehab or something like that,” said Lewis. “When I was growing up, the grandma, the great grandma — everybody stayed in the same house. Even when they got sick, they would die in that house. They would never think about going into a nursing facility. But that is a decision families need to make. You need to talk to your family members, see what their desires are, and make sure you’re getting all of those desires documented in a will.”

“Love and Loss” has received glowing reviews – from people who have worked in nursing homes, to adult children facing the possibility of their parent entering nursing home care, to Patrice Harris, former president of the President of the American Medical Association.

Lewis said she’s grateful for this evidence of the book making a positive change in the lives of others. She’s also grateful for the profound impact the book has had on her own understanding of the many challenges she has faced over the past 27 years.

“I’ve gone through a lot and through postponement and not being able to get out of facilities when I want to — and through that came purpose in writing the book. I’m reminded by my daughter of that all the time: ‘Mom, if you hadn’t gone through so much, maybe the book wouldn’t have been published,’ — and that’s part of purpose in our lives. We don’t understand why things happen,” said Lewis. “I try to encourage people to look beyond themselves. And I’ve learned that there’s always purpose. Mark Twain said that there are two best days of our lives: one is being born, and the other is finding out why. That’s purpose.”

On Thursday, February 24, Little Professor Book Center  in Athens (35 South Court Street) will host Dr. Carolyn Lewis for a reading of “Love and Loss: The Stories Nature of Nursing Home Care” from 4 p.m. to 6 p.m. Lewis will have another reading event for “Love and Loss” on Saturday, March 19 at the Athens County Public Library (30 Home Street) from 2 p.m. to 4 p.m.