When the coronavirus pandemic began its insidious spread throughout the US, I reacted as many other Americans did – I rushed to the store to stock up on food and cleaning supplies. Not just for my own household, but for my mother, father, and sister. All three of them are high-risk for serious illness from the virus.
Both my father and sister suffer from multiple sclerosis, an auto-immune disorder that disrupts the central nervous system by damaging the protective coating called myelin that encases our nerves. My father has been bed-bound from multiple sclerosis for close to two decades. My sister was diagnosed several years ago and is still adjusting to her new limitations.
Caregiving is a part of my family's daily life. Over the decades, we have relied upon each other's presence and support to survive. That support has intensified and shifted as the virus wreaks havoc across the globe.
Mom is Dad's primary caregiver, despite recently entering her seventies. She is also a caregiver by trade. A home daycare provider for over thirty years, Mom was set to retire this June. Coronavirus forced an early retirement. The children entering our home, a source of joy and community and livelihood to our family, are all potential carriers for the disease. “There's always that 'what if',” Mom told me recently. Despite wishing to re-open the daycare doors, “the need for peace of mind is greater.”
Mom's age puts her in the high-risk category right along with Dad. Caregiving for my father is demanding and it becomes increasingly difficult as both he and my mother age. My siblings and I have always lived close by to help out when needed. My sister now lives even closer. After multiple sclerosis robbed her of the ability to work full time, she moved in with Mom and Dad. Even as she struggled with her own health, her presence and support eased the workload.
Despite living under the same roof, my parents and sister made the difficult choice to quarantine themselves off from one another on separate floors of the house. For four weeks, my sister has lived upstairs and my father and mom have lived downstairs. They cannot risk passing the virus between each other. Three high-risk family members, all relying on each other, all unable to go to the store, pick up prescriptions, or share a meal together.
Like a falling row of dominoes, coronavirus knocked out our normal chain of reliance. Mom has to take extra precaution when tending to my father. My sister can no longer help care for my dad. My mom can't help my sister. My sister can't help my mother. My brother and I cannot enter the house.
My worries are endless. What if there are more shortages of the bathing cloths and personal care supplies that my father needs? What if Dad suffers another seizure and needs to go to the hospital? What if my sister's multiple sclerosis progresses and SHE needs to go to a hospital? What if Mom gets sick with the virus and cannot care for my Dad? What if my sister gets the virus and cannot help Mom OR Dad? What if I end up passing the virus along to them myself?
What if, despite my best efforts, I can't be a good enough caregiver?
Caregiving requires the continued strength and health of the giver themselves to be able to provide for those in need. Coronavirus has made it nearly impossible for my family to care for each other the way we have before. It has also made me acutely aware that my family needs me to stay healthy. Not just during this immediate stage of the crisis, but for months and even years to come. Even when a vaccine is hopefully discovered, the caregiving balance will likely have permanently shifted. My sister's illness and my mom's advancing age will mean they will be more and more reliant on my brother and myself.
I can't immediately heed the advice to avoid large crowds during the first weekend of recommended social distancing. Instead, I must visit four different stores gathering food, prescriptions and medical supplies. Arriving at my parents' home, I briefly wipe off their supplies with the few antibacterial wipes I have and begin hauling them to the front sidewalk. Mom hovers inside the front door, ten feet away, uncertain whether or not she should chance stepping outside. “I'll just wait here until you finish,” she says. I know it's not personal, but her obvious recoil from me stings.
My sister waves to me from the top window. Like Rapunzel, she's trapped upstairs, unable to escape. It has now been two weeks since anyone else entered the house, two weeks since they began living on separate floors. Mom, Dad, and my sister are hoping to relax this strict separation after fourteen days, the recommended time to self-quarantine if one is experiencing potential coronavirus symptoms. The last week the daycare children gathered in the home, one little boy had a cough. Mom and my sister are now both experiencing sore throats.
Dad, fortunately, has not developed a sore throat. That is because he is already bed-bound and comes into contact with few people. We already know to avoid contact with Dad if one of us is experiencing an illness. “I hate to say this,” my brother said during a recent conversation. “But Dad's already pretty much quarantined. The only way he's getting that virus is if someone comes into that room.”
The groceries are wiped off again once Mom takes them into the house. Every item has to be carefully sanitized. These precautions extend to anything that comes into the house, including the mail. Mom, wearing gloves, places the mail in a box and leaves it there for several days. Then she opens the envelopes and places the contents in yet another sanitized box and leaves that for several more days. Only then can it be handled.
Avoiding cross-contamination requires developing elaborate, unsustainable rituals. Mistakes are easy to make. Did I touch this, did I touch that, did I properly sanitize that – it becomes nearly impossible to keep track of. Inconsistencies inevitably abound.
To my immense relief, Mom and my sister recover from their sore throats. After four weeks, they have tentatively started allowing more contact between each other. Not much, but the intensity of the isolation lifts ever so slightly.
The question we are all asking is how long must we live like this? “How long is long enough?” Mom asked me. For most people, life will eventually return to some semblance of normality. For my family and other caregivers, things were never 'normal' in the first place. Until a vaccine is discovered, we must maintain our distance from each other in some form or another. Perhaps Mom will no longer sanitize the mail, my sister can occupy the downstairs floors, and my brother and I can tentatively re-enter the house. But the risk will be there for months, maybe years. The caregiving demands for Mom, Dad, and my sister will only intensify as time goes on.
Caregiving is an incredibly demanding job that requires more sacrifice than any one person can make alone. Our family has always required each other's presence and support to survive. That support is more important than ever, yet the distance we must place between each other makes it harder to give. I have always and will always need to be close by to support my family, the loves of my life. I can only hope my efforts are enough.
Meaghan Lillis is a vocal/piano instructor, writer, professional musician, and Colorado native.
