I can’t believe that it’s been 4 years this month since I had the honor and privilege of speaking at our nation’s capitol on behalf of nursing home residents in Kentucky and the United States. In June 2021, my amazing warrior friends from across the country met in person for the first time to see our grassroots advocacy work come to fruition in the introduction of the Essential Caregivers Act. This bill, if passed, would protect the right of nursing home residents to have a caregiver who can never be denied access to them, regardless of visitation restrictions. The Nursing Home Reform Act of 1987 guaranteed certain rights to people who live in certified skilled nursing facilities, one of which is the right to have visitors of their choice 24/7. This right can, however, be “paused” in the event of any circumstance that would endanger other residents.
I remember well how we thought it would just be two weeks or so until facilities could figure out a plan and we could come back inside safely. It ended up being nearly a year before we could get back inside (depending on the state you lived in and the facility’s rules). Research today proves what we as families knew all along–isolation amplified the suffering of nursing home residents which resulted in rapid decline for nearly all of them and death for many. Those of us who lived it don’t need research to tell us that. We endured watching our loved ones slip away from us through a window or an ipad screen. We watched as they forgot how to use the phone or the remote or even how to drink through a straw. We watched as overwhelmed staff placed meals on our loved ones’ trays and walked away, leaving them to feed themselves even when they were unable. We saw water placed out of reach of our loved ones. We heard them repeat through the glass, “Why can’t you come inside? Why?” as they struggled to understand what was happening in the outside world. Our hearts will forever carry the scars of the injustices that were done to our loved ones as we were powerless to help them.
So a small army of us decided to take the power back. We decided to stand up and say, “This is wrong. This can never happen again.” Because, friends, it WILL happen again. There will be another illness, or earthquake, or tornado, or flood, or zombie apocalypse that requires general visitation to be restricted in nursing homes and care facilities. So we MUST have a plan in place. It must become part of facilities’ emergency preparedness plan. Loved ones who come in regularly to provide care to residents are not regular visitors. We offer hands-on, physical support but we are also the emotional connection to a life once lived. We provide relational, spiritual, and social support, and we free up staff to spend more time with residents who do not have loved ones as caregivers. We are partners in care.
Four years later, we still don’t have protections for Essential Caregivers. It seems like a no-brainer, right? Yet the people with the money and the power want to do more studies and consult more experts. They want to water down the language so there is no enforcement. Legislators want to test the waters and see what their colleagues think before they sign on. Tell that to the families who stood outside the nursing home windows and watched as their loved ones simply gave up and stopped eating because they couldn’t bear to continue living in isolation. They don’t need any research; their lives were the research. In fact, for every two covid deaths in nursing homes, there was at least one death attributed to failure to thrive or decline due to isolation—estimated to be at least 40,000.
I’m disappointed in my country. We should be ashamed of the inhumane way we treated nursing home residents during the pandemic. Now we have the chance to course correct, to make things right for the future. And we’re hesitant. Let’s just say it: our leaders want to weigh the monetary and political costs against the loss of life and the rights of some of our most vulnerable citizens…who, by the way, can’t speak up for themselves. So we’ll keep fighting. Our small army will not go away. We will not be quiet. We are David fighting the Goliath that is the nursing home industry. And we all know who won that original fight.
So where are we now? As of this post, we are working to get the Essential Caregiver Act re-introduced to this session of Congress. We have bi-partisan, bi-cameral support, and we have a much better version of the bill than we had in 2021. We’ve learned a lot about politics and how bills get passed; unfortunately it’s not like the “I’m Just a Bill” Schoolhouse Rock song.