This is a hard week. It’s been five years. Five years since covid forced our lives to change forever. Sometimes it feels like it was an eternity ago, and other times I can still feel the frustration, confusion, and sense of helplessness like a rock in the pit of my stomach. I can honestly say that I was never afraid, at least not for me or my immediate family. But for my extended family–my loved ones and friends at the nursing home–I was terrified. The virus itself was not what terrified me. It was the prolonged isolation, the absence of outside accountability, and the realization that I could do absolutely nothing to protect the people I loved. I knew after only a few weeks that we were working so hard to protect nursing home residents from covid that we were actually killing their spirits and their will to live.
Before March 13, 2020, I went to my mother-in-law’s nursing home at least once a week. Our church had adopted her care home after my husband and I realized the enormous need inside–the need for friendship, conversation, and spiritual support. My little team of volunteers had a church service in the dining room every Sunday afternoon, and we spent some time beforehand going up and down the hallways visiting with residents who couldn’t come out of their rooms. Those were precious days. They were the start of our ministry and advocacy work. Sadly, for various reasons, we’ve never quite returned to the simplicity and beauty of those times.
I actually remember the last Sunday we were allowed inside. At that point, the world was just beginning to learn about the coronavirus, and so we were stopped in the lobby and screened before proceeding. Other than that, the day was like any other. We enjoyed our church time with our friends, stopped in the memory care unit to sing some hymns, and visited with Todd’s mom. We also had the pleasure of taking a photo with a 101 year old resident and a painting of his I’d found at the local flea market. We didn’t know it, but it would be a year and half before we were allowed to come inside again.
At first we were told it would be a couple of weeks. “Flatten the curve.” Remember that? A couple of weeks turned into months. By Christmas 2020, I was working on the “Hugs for the Holidays” campaign–a multi-state project to raise awareness of the loneliness of nursing home residents by placing pink bows outside homes and places of business. Suddenly I found myself giving interviews for the newspaper, radio, and television news outlets. I was determined to lead the fight to open the doors of the nursing home. I emailed legislators, called their offices, sent letters to nursing home executives, and talked to officials in the Kentucky Cabinet for Health and Family Services. I researched laws and guidelines and infectious disease protocols. While my mother-in-law was actually doing fairly well at that point (from what we could tell), we knew of other residents who had given up hope, stopped eating, and died. We knew of residents who, without the visits and care of their loved ones, declined so rapidly that within just weeks they passed away. Instead of covid being listed as the cause of death on death certificates, it was failure to thrive.
My mother-in-law’s facility was blessed with an administrator who worked tirelessly to keep families informed. She actually held Zoom calls twice a day for almost a year. She worked long hours and was always accessible via email or phone. But she was David and covid was Goliath. The CDC guidelines constantly changed. The policies, protocols and paperwork increased drastically. Staff turnover was higher than ever. And she couldn’t possibly be involved in every detail of what was happening in the nursing home. We got phone calls from residents who said, “I haven’t had a bath in weeks,” “I was told I have to wear diapers because I don’t have any clean underwear,” “I know I stink and I’m embarrassed,” “There’s no one to cut my hair and I look terrible,” “This feels like living in a concentration camp.” I would try to assure them that everything was going to get better, but I didn’t know if that was actually true. My heart was broken for them.
It’s been five years. And in five years, we still have no real plan in place for the next public health emergency when it comes to nursing homes. We know that isolation was deadly, but we don’t have any laws in place to prevent the facilities from locking out families, as they did during covid. When covid was new, and we didn’t know what we were facing, it was prudent to restrict visitation. Now that we know we can implement common sense infection control protocols, we can use what we have learned to safely protect nursing home residents’ rights to have visitors–which is of utmost importance for their overall wellbeing. So while the rest of the world moves on and forgets the impact of covid, those of us who heard the cries of isolated elderly, who peered through windows and tried to explain why we couldn’t come in, who tried to express our love through plexiglass and PPE, who had to say goodbye to loved ones in the nursing home through a screen…we will keep working to ensure no one has to endure that ever again.
(I purposely did not include research or statistics in this post, though I absolutely have that data. I also did not include information about our ongoing efforts to pass legislation that will allow nursing home residents to have a family member or loved one who, following proper protocols, will always be permitted to care for them in person, regardless of other visiting restrictions that might be necessary in a future public health crisis. For more information and to learn how you can join these efforts, visit https://caregivers4compromise.com/.)