For nearly a decade, my freelance writing career included plenty of articles about chronic wounds, payment reform and pretty much anything else skilled-nursing related.
Surely, I thought, I’d mastered enough acronyms and regulatory nuances to hold my own in most any conversation about long-term care.
Then came the final weekend before the start of my new role as senior editor here at McKnight’s Long-Term Care News. On a Friday afternoon in the middle of a pandemic — as if some unannounced part of the hiring process — I became a nursing home consumer for the first time.
Along with family members a state away, my husband and I worked the web and our phones, desperately trying to find a facility that would admit a close relative. We had finally been able to convince her husband it was time to seek more help following a week-long hospital stay precipitated by a long decline due to early-onset dementia.
A social worker suggested a facility that was conveniently located but boasted a 2-star overall rating and scored consistently abysmal marks for staffing. No thanks.
Due to COVID-19 restrictions, another relative’s first choice wasn’t accepting dementia patients who wandered. They recommended another facility under the same ownership a full hour away. No thanks.
Then, I connected with a sharp, compassionate admissions counselor at a continuing care retirement community with a 5-star rated SNF — one that had open beds for both rehab patients and residents with dementia.
Within two days, our relative was eating and drinking, which she’d refused to do in the hospital. She had lucid moments, and she slept through nights for what seemed to be the first time in months.
And yet her stay lasted less than two weeks.
She hadn’t completed therapy, and her dementia hadn’t suddenly reversed course.
Instead, her husband decided she would be better off at home, where he’s now paying out-of-pocket for visits by home care staff with limited medical skills and none of the dementia-specific training that would help both of them cope with mounting daily challenges.
His decision was driven largely by guilt over a promise never to place his wife in a “home.” It was a promise made before anyone knew that dementia was coming, or that the man playing caretaker would have serious health complications of his own.
It was a promise sought and granted because of a decades-old stereotype of nursing homes held by two people who had never visited a modern facility. It’s a promise now kept, despite pleas from the rest of us to find a placement that would improve conditions for both of them.
I respect that choice should be a part of long-term and end-of-life care. But making choices without all the information isn’t much of a choice at all.
All of this is reminiscent of a conversation I had last fall with Sondra Norder, the award-winning president and CEO of St. Paul Elder Services in Wisconsin. Norder has made quality healthcare, meaningful resident experiences and transparency hallmarks of her community — largely because her own mother had such a bad opinion of nursing homes that she insisted she never wanted to go to one.
My relatives hadn’t witnessed nursing home life since long before patient-centered care became a widespread goal. It was also before the advent of public-facing ratings systems, and before private rooms and spa-like amenities surged into popular practice.
Shedding new light
Unfortunately, because of COVID-19 visitor restrictions that continue in their state, they can’t see what modern care really looks like. They can’t see how much energy and enthusiasm most frontline workers put into their job every day, despite being paid far less than colleagues in many other settings.
And so they made a blind decision based largely on emotion. (To be fair, during COVID times, fear of never seeing each other again is a valid emotion when a loved one has an end-stage condition.)
I share all this with you, readers, because shedding light on what’s really happening inside your buildings always will be top of mind for me in my new role as senior editor.
Yes, I will cover the “bad” news. We all know there are disappointing decisions and bad actors in every industry.
But to all of you doing good, I also say: I see you. I see you rising to the challenge of caring for more medically complex patients. I see you embracing technologies that keep residents safe and spark moments of real connection. I see you advocating for payments that reflect the value you place on the lives of our seniors and the work of your frontline staff.
It is my goal to help you share stories and strategies with each other — with all of us — so that everyone can better move forward and shatter the industry’s dark stereotypes once and for all.
Kimberly Marselas is senior editor of McKnight’s Long-Term Care News. Follow her @KimMarselas.