Being a Caregiver in a Time of COVID: The tragedy that’s happening inside, and outside, of our nursing homes
I haven’t seen my mother since February 18. As her primary caregiver, I used to see her every day. Not just to visit. But to feed her. And wash her face, and brush her hair, and to let her know she was loved through eye contact and hugs. But COVID-19 changed that. There’s a serious situation with COVID in nursing homes and loneliness.
Apparently, I’m not deemed an essential caregiver, simply because I’m a family member. Like most nursing homes, her facility is on lockdown. The virus has been especially virulent in these facilities, so I’m barred from visiting her. Last week, I learned that she went 18 hours without eating because there was no one available to feed her. I would have jumped through hoops in a HAZMAT suit to feed her. But because I’m a family member, I’m not allowed in.
My mother had a brain aneurysm that left her completely debilitated. She has aphasia and can’t communicate with language. She can’t walk or move her extremities so someone has to do it for her so they don’t stiffen up. But worst of all, she can’t fully comprehend what’s happening in her world. My brothers and I go almost daily to sit outside a sun-obscured window in the hot Florida sun on a noisy road to talk to her. Just so she can hear our voices. But when we arrive, she closes her eyes. We think it’s her way of protesting. If we can’t hug her, she doesn’t want to see, or hear, us. She doesn’t understand.
Here’s what so many people, especially our legislators don’t seem to understand. Yes, COVID-19 kills this vulnerable population. But so does isolation, and loneliness, and depression. I know of residents who have simply quit eating because of the despair of not seeing their family. This is a vulnerable population in so many ways. Their health can decline on a dime when their standard of care changes even for a matter of days. And yes, some of these people have died simply due to depression. You’ve heard of “broken heart syndrome.” It’s real.
You see, personal touch is immensely important to residents of nursing homes who are approaching the end of their lives. They need to feel loved. Human connection. Physical connection. In my mom’s case, it’s our only form of communication. She must feel like she’s being punished. Or abandoned. I’ve heard from others who say that their loved ones feel like they’re imprisoned. It makes me think of those children who were separated from their parents at the border and the despair and uncertainty they must have felt. Nursing homes have become cages.
Before her stroke, we were an exceptionally close family. We all lived in the same neighborhood and saw each other daily. I didn’t leave her side for the first 100 days following her illness – literally. My brothers and sister-in-law and I took turns sleeping on an air mattress on the floor next to her bed. But in this era of COVID, according to the government, we’re not caregivers. We’re visitors.
I’ve spent my quarantine lobbying the governor, the president, their wives (I thought as daughters themselves they’d understand), state agencies and anyone who would listen, for ways to allow family members to safely access their loved ones. I offered to have that horrible lengthy swab shoved up my nose daily, I begged for just one hour once a week, I offered to meet her outdoors, distanced 10 feet. But no one would listen. Yet they can spend countless hours, and days, debating and tweeting about the need for quarantine-weary residents to have access to breweries and gyms.
I even wrote an article for Next Avenue on how “My Mom Just Wants a Hug: Families Unite to Open Up Nursing Homes.”
So why have we not been able to come up with safe ways to allow family members to see their loved ones? PPE, distancing, tests, barriers, temperature checks. There are solutions. I’m sure you would be hard pressed to find a family member who would refuse any of these requirements in order to see their loved one. Workers deemed “essential” have been provided immense support from their employers and government leaders to ensure their safety. But wasn’t I essential to my mother? Our legislators are stuck in reactive mode and not a proactive mode where common-sense solutions would prevail.
Listen, I’m not faulting these facilities. They are chronically understaffed and without family members coming in daily to help out with their loved ones, they’re doing double duty. Like parents-suddenly-turned-homeschool-teachers, no one was prepared for this.
To this day, my mother just continues to cry when I show up. Try explaining to someone with 3/4 of a brain that there is an international pandemic and the government has barred you from seeing her. I try to connect with her by taking her my grandmother’s homey Southern casseroles, but I have no idea if she eats them, or if they transport her tastebuds to another place and time.
After six months, our governor finally took note of the outcry over this, dare I say, abuse. He announced that he was ready to talk about opening up nursing homes. Rapid tests were the answer! Family members could get an instant test at the facility and if the result was negative, they’d be allowed to see their loved one (with restrictions on masking and distancing, of course). Whomp whomp. But those rapid tests are in short supply. So it could be weeks, even months, until they are available in nursing homes. Never mind the fact that everyone from politicians to baseball players to celebrities have access to them. Somehow our elderly population does not qualify in the hierarchy of importance when it comes to allocating rapid tests. And yes, I know that many of these groups who have access are private payers. But why can’t our government understand that residents of nursing homes are dying due to loneliness. A rapid test could allow a loved one in to visit and be a true lifesaver.
What this issue needs now is attention. And action. We can’t keep putting these lives on the back burner – many of these residents are facing the end of their lives. They are not a throw-away generation. Reuniting them with family needs to be a priority.
My mom could die before I get to hug her again. I am not a visitor. I am family. I am a caregiver. Our voices need to be heard.
Read more about my experience as a caregiver for my mother at “Death is Birth in Reverse: A Daughter’s Diary.”