I will be OK. She will be OK.
I tell myself this several times as I drive two and a half hours to my mother’s house. She is 84 and fell a few days earlier. I have not seen her since last Christmas, prior to the coronavirus pandemic. My husband and I had not planned to travel during the holidays. He stays behind. I will sleep with the window open and the door shut. I will sleep in fuzzy pajamas and socks. I will wear a mask indoors. I will be OK. She will be OK. When I arrive, she is bruised and stiff, using a walker. Prior to her fall, she zipped around unassisted and lived alone.
I stay two nights to cook, clean and help. The first day, I step outside, lower my mask and stare upward at the longleaf pine trees. Two hawks, huge and silent, take flight. I breathe in the moment, calm. I pull up my mask and return inside. The second morning, Thanksgiving Day, Mom says she feels better, and she seems more energetic. I am encouraged as I drive home.
Two days later, my sister takes Mom to the ER because she is in terrible pain and unable to walk. She is admitted for observation. My sister is the only person allowed to visit ― a restriction imposed due to COVID-19. The next day, my sister calls. “You aren’t going to believe this,” she says. “The caseworker called and said Mom has 72 hours in the hospital. Then Medicare is kicking her out. Not only that, Mom needs family to provide 24-hour care or she goes to a nursing home.”
My chest tightens. Mom refuses to go to a nursing home. My sister, brother and I agree to care for her at home. My sister and then my sister-in-law stay at Mom’s house until I return a few days later. This time, Mom dozes most of the time, and her chest heaves with each breath.
“I feel like I’m going to die,” she says several times as she gasps for air. She had recovered from COVID-19 three weeks prior to her fall. The doctor hedges when asked if this is from the virus, but he is clear that she could be re-infected if exposed in a nursing home. Nationally, deaths of residents and staff at long-term care facilities made up nearly 40% of the country’s COVID-19 death toll as of mid-November. At the same time, 29% of these facilities are experiencing staffing shortages.
The complications from Mom’s fall escalate. An infection, blood levels out of whack, little appetite, and on it goes. All of it adds up to this: Our mother is not progressing. She is slipping, losing traction, on a downward slide.
On my second visit, I clean the living room. I have not seen her house this messy before. I pick up a wadded cardigan laying against the wall. Bloodstains cover the beige cotton. I ask about it and she says it is from the day of her fall. Tears blur my vision as I take it to the laundry room and spray it with cleanser. I imagine her panic as she bleeds, hurting and unable to stand. An hour after she fell, the mail carrier heard her yelling and called 911. The bloodstains wash out, but Mom’s fear of falling, of being alone, doesn’t fade.
But I am fine. I pretend I am fine. I pretend I am rolling with the situation and not a worried wreck. I imagine Mom in a nursing home, sitting in a vinyl recliner, sleeping with her mouth open. In the county where she resides, long-term care facilities’ residents and staff make up 69% of COVID-19 deaths. Placing our mother in a nursing home during the pandemic feels as though we would be issuing her a death sentence.
At two in the morning, she calls for me. She needs to go to the bathroom. First, she sits on the bed, gasping for breath. “Funny the things you focus on at a time like this,” she says. “I’m looking at the dust on the bottom of the rocking chair. How long has it been since I dusted?”
I wish I could say I am a good daughter and I dust the pine frame. Instead, I lean against a wall, groggy from waking up from a dead sleep.
“Remember what the physical therapist said to do. Inhale through the nose, out through the mouth,” I say in a mumble. I repeat those words, or “Smell the flowers, blow out the candle,” when she gasps for breath. Standing, walking and sitting all result in a struggle to breathe. We have asked if the shortness of breath is from COVID-19 or complications from her injuries. There is no clear answer.
I worry she will not bounce back. I sob at night in my childhood bedroom. I sleep in the fuzzy pajamas and socks, the window open to the night air and the door closed against the heated recirculated air. The wind rattling the dead leaves outside comforts me as I drift into a restless sleep.
One afternoon, I go to the grocery store. Another family member offers to stay with Mom but is only available for an hour. My one hour away over the four days at her house. I need this break from seeing my mother struggling. My head pounds and my shoulders ache. I remind myself to breathe as the physical therapist told my mother. Afterward, I fetch my mother’s checkbook to enter the purchases I made. The jagged lines forming words and numbers are unfamiliar. My mother’s cursive handwriting, each word one smooth curved line, filled the letters she sent when I first left home. When did she lose the ability to write beautifully?
When our father died of a heart attack, Mom soldiered on and enjoyed a full life until the pandemic. She played cards and dominos, attended minor league baseball games. During the pandemic, she still gathered with a few friends to play dominos and cooked full meals daily, from scratch, until she fell. For me, losing Dad was like jumping from a dock into cold water, a sudden immersion into grief. Seeing Mom’s lack of progress and setbacks is like walking into the cold water, feet and toes numb by the time the water is waist-deep.
Discouragement fills me. None of us can afford to quit work or pay for full-time care. I am grateful I am currently working from home and have some flexibility in my schedule. Other families may not have the option to provide care as an elderly family member recovers from a fall or medical setback.
My sister and I have butted heads often, even as adults. During this time, we are gentle with one another. Several weeks in, my sister’s car unexpectedly dies and she must buy a new one. She drives from the dealership to Mom’s. Under the pretense of going for a spin, we drive around the neighborhood.
“How do you think she’s doing?” my sister says.
“She’s not well. I’m not sure we can keep this up,” I say as mildly as I can.
“I can’t tell Mom she is going to a nursing home. I cannot look her in the face and say those words.” My sister gulps and grips the steering wheel.
“I can’t imagine telling her either,” I say as I inhale the new car smell. In our family, we keep cars for 10 to 20 years, much like we cling to old habits. I wonder if, in the coming years, this moment will be a memory, steeped in grief and pain, for my sister. A memory stirred when she grips the steering wheel.
In the past, I would have rushed to stay with our mother and shouldered much of the responsibility for her care. I did so following previous surgeries. Now I resist the urge to jump in. I cannot fix this. I cannot magically heal her wounds and health issues. I sit with the feeling of being powerless to stop her decline.
Once I return home, I binge on cookies. Ginger snaps, then oatmeal, then maple cream, then butter cookies. I buy a different flavor with each trip to the grocery store and bakery, and I consume them all with hot tea. The pain of eating too much is easier than the pain in my heart. Weeks later, I try to leave the cookies behind and seek time outside. I walk the dogs frequently, all the while breathing in the cold air of winter’s eve.
This period of caring for our mother rests heavily on my sister as the only daughter living in our hometown. Her planned week off to shop and bake for Christmas is spent living with Mom. By the weekend, she decides she needs to talk to our brother and sister-in-law, who also live in our hometown.
The women in our family carry the load when it comes to housework and elder care. We are not the only family entrenched in this division of labor. It is estimated that 66% of informal caregivers are female. Also, female caregivers spend as much as 50% more time providing care than male caregivers. There are only grandsons in my family, and this heightens the tension over how to manage Mom’s care.
Just as I am learning not to step in and try to fix a family crisis myself, the family is learning to move beyond rigid gender roles. When my sister, brother and sister-in-law meet, they agree more people are needed. My sister, capable of running a small army, swings into action. She texts and calls family members, tells our brother to get his kids to step up, and pencils in names to create another week of coverage. She accomplishes this within an hour.
She calls to say, “This is the guys’ week. The grandsons are looking after Grandma. I only have to stay one night.” I hear the relief, the giddiness, in her voice. This shift in the family pattern is a new beginning, a new way of relating to one another. A weight lifts off my chest.
Week by week, we can cobble together a schedule. Between grandsons, siblings, siblings’ spouses, and myself driving in for days at a time, we can cover until the end of the year. Then work schedules change, grandsons return to college, and the coverage becomes challenging.
In early December, the doctor says she needs one to two months to heal but does not say how much longer she will need 24-hour care. We cling to the hope that she will be able to stay by herself soon, at least some of the time.
At her last doctor’s appointment, he announces the infection is gone and she asks to stay by herself. The doctor agrees she can try. She wears a lanyard with a device to summon assistance. She attempts one night alone and then another with no problems. She calls a grandson for help, a first, when she wants to change her bedsheets.
I bounce in for another visit. I need to see for myself how she is doing. She no longer gasps for breath. She forgets to use her walker some of the time. She cleans her plate. We check her latest bloodwork online. Her numbers inch toward the normal range. A day later, a nurse calls to say she can stop taking another medication.
On my last night at her house, Mom prepares salmon patties for our dinner while I chop and roast vegetables and boil grits. She stands tall and unassisted at the stove, her attention on cooking. It feels like so many other times in her kitchen, before the pandemic, before her fall. I joke about my past attempts to cook the patties, unable to achieve the flavor and texture she produces each time. She laughs. When I drive home, I am grateful we were spared a decision that would bring none of us peace. I do not know what may happen in the future. But as a family, we pulled together until Mom could stand on her own.
Lynda Black lives in North Carolina with her husband. Her current writing projects include a historical novel and nonfiction essays.
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