The Malveaux family and about 200 guests celebrated my mom’s ninth decade on the planet on May 5, 2018. Her birthday was in February, but both logistics and quirkiness contributed to the selection of date. She wanted friends to come, and she didn’t want weather drama. As her birthday fell in Lent, she didn’t want a big celebration then. So we festively gathered to celebrate a mass in her honor and a proclamation from the Pope. (Mom is a devout Catholic, and everybody doesn’t get a birthday shout out from the Pope; it meant a lot.)
It was a great day. Memories swirl and make me smile. Mom, very often using a cane or walker, danced for more than an hour without her cane. She was wearing a flowered skirt that swayed and sashayed with the music. Her smile was bright enough to light up a cave, and she had all her loved ones, including her brother, James Alexandria Jr., with her. Uncle Bubba suffers from some dementia, but that didn’t stop him from smiling and clapping as his big sis enjoyed her day.
The most indelible memory is that of Mom dancing with her godsons to the tune of Frank Sinatra’s “My Way.” As the MC, I was told to announce the godsons and their dance, first Ralph Eubanks, a University of Mississippi professor who met Mom at Ole Miss when he was an undergrad, then Michael Nolan (also known as Mickey No), a neighbor who converted to Catholicism and got her as a Godmom. Ralph is black, Michael white, and none of that matters to Mom. She is, she would say, into “people” and their hearts. And so she loved them both.
Now, my mom is a trip—I come by it honestly. So she also added that after she had her first dance with her godsons, “other gentlemen were welcome to cut in.” And cut in they did, and she leaned in and smiled. And I nodded, thinking if I live to be 90, I wanted gentlemen to cut in, too.
My memory is now clouded by my mother’s current state. Less than a year after we celebrated her 90th, she had a stroke that left her speechless, and with her right side mostly incapacitated. She spent about 50 days in a rehabilitation center. They released her because they say she had “plateaued.” We didn’t agree with their diagnosis, but we are one loud and aggressive family that can’t make headway of the health-care system, despite our knowledge, education and expertise. There is a lawyer in our midst, two policy analysts, one with a Ph.D, one with an MBA. Other close family members bring extreme expertise to the table. Our advocacy has made a difference, we think, because Mom’s health insurance company says they won’t send people back to the rehabilitation home where she was getting treatment until the place is thoroughly investigated.
Mom was a victim both of predatory capitalism and of our nation’s broken health-care system. The place was chronically understaffed (one night a certified nursing assistant, or CNA, told me that there should have been six CNAs to staff the overnight shift, but instead there were only two!), and the workers were underpaid, some earning as little as $15 an hour. Turnover was high. Many of the nurses did their best and were loving and patient with Mom, despite the challenges they faced. A few were short-tempered and brusque.
But the primary doctor was a special kind of indifferent. Her weekly visits lasted a perfunctory five or 10 minutes. When she went on vacation, it was clear it was possible to provide compassionate care, even within the constraints of this for-profit rehabilitation center. Her replacement was more caring and compassionate and made an effort to engage with Mom, even though she was speechless.
I think of the swirling, flowered skirt and the joy of our party when I watch Mom now. The same woman who took a microphone out of my hand because she didn’t like my freestyle ad-lib, is now fighting to speak her mind, and sometimes she does. A nurse told her she needed to drink more water. So I put a full glass of water on her tray. She pushes it away, scowling.
I say, “Mom, you know the nurse said you have to drink more water.” I push the cup back at her.
From somewhere, from her gut, she growls and slurs a complete sentence. “I’ll drink just what I want.” Joy! And then she takes a sip.
Her flowered skirt is swaying, her words are forming, her life is continuing, she is the fighter I was trained to be. Now it is up to us—my sisters and me—to have her back. It’s up to the guys, my brother, my nephews, some amazingly helpful gentlemen, to help. To help her do speech, occupational and physical therapy. To engage her in activities (she likes to fold towels). To keep her spirits up. To be as vocal for her as she once was for us.
But watching her struggle to speak, to eat, to live, cuts me into tiny little pieces. My mother is silenced. Silent. Or not really. She grunts. She cries. She tries. She struggles to express herself. She repeats phrases, and we can feel her frustration. She says, “What I’m trying to say is,” then there is a garbled set of syllables. What is a daughter to do? What is a sister, thousands of miles away, to do?
Health care.
I have written about health policy, but it has not come to visit me until now. Now, all these crazy health-care metrics make no sense. You should recover from a stroke in three weeks, the HMO says, or you should go to a nursing home or back to your own home. In our case, Mom came back to the house we grew up in two months after her stroke. It required making all kinds of changes in the house. Reconfiguring the bathroom, buying a hospital bed, putting bars on the wall, getting a stair lift. Once upon a time, I talked, wrote and taught health policy. Now, it is sitting in my mama’s face, and we have to manage it, all of it—the insurance, the home health care, the scheduling of therapy and the perception some doctors and therapists convey that a 91-year-old woman can’t get better.
And I’m lying if I say “we.” The five Malveaux siblings are dealing with Mom’s situation, but differently, based on proximity. I live in D.C., and the others are on the West Coast. They, along with a cousin, have been providing much of the day-to-day care. I’m hands on when I’m there, but I’m not there often enough. I feel crippled with guilt and internalize everything. Why should I be out and about when others are missing work to attend to Mom? Why should I take time to write, when I could join the cadre holding Mom up? Does beating myself up make a difference?
My baby sis, Antoinette, who is “the general” in this—she has the power of attorney and all that—lets me off the hook.
She says, “It’s a mosaic, and we all do what we can, do our best at what we can.” Her words are balm to me. Still, I want to do more. And my need to be more present weighs on me from the time I get up in the morning until the time I go to sleep.
Have I really ever been fully present with Mom as an adult? I cringe at some of our battles, especially around politics and her unlikely coterie of weird white friends, bonded by their faith and her capacity for silence. I would not be me if I didn’t challenge them. Now I’m rethinking. Could I have given her the gift of silence? But if the truth is to be told, I’d not have done anything differently.
I’m not ready to be an orphan. I have things I need to talk to my mom about. I am her rebel child. I need absolution, the knowledge that she got me. We were creeping toward that, with tentative conversations in the months before her stroke. I need to close the loop. If not in a conversation, at least in my mind. I need the flash of her eyes, the tap of her hand, the reluctant smile, the day when I prompted her to say, “I love you” and she did. And I cried.
If you are blessed to have your parents into their nineties, you’ll deal with the same challenges I’m dealing with. Or, you’ll have been struck with the inevitable blow when you are younger. I feel so blessed and profoundly favored that I’ve had my mom for all of my 65 years. She can’t talk now. I want to speak for her. I have always had her permission to roar, although she’d prefer for me to roar with decorum. I am roaring for affordable and dignified health care. I am roaring as an advocate for the public assistance recipients my mom embraced when she was a social worker. I am roaring for the home health workers who aren’t paid enough. I am roaring for social and economic justice because I was raised by a woman who always roared, almost always fought, always made a difference.
This is my new normal. No way to call and check in with Mom, so I have to imagine her voice and reassurance or gentle scolding. (“Really, Julianne, was that necessary,” she said when I described some victim of my rapier tongue.) No long conversations with my sibs about life because they are fully engaged with Mom.
Here is my new normal. It is the vision of the flowered skirt, swaying to slow music, a lovely lady dancing and smiling. It is the vision of embracing joy, love and life. It is the image of my indefatigable mother, silent now, but the loudest voice in my head.
When I was a kid, she brought some of her Welfare clients home, gave them my clothes, reminded me that I was privileged. I learned of the National Welfare Rights Organization because she had my sibs and me help Mrs. Helen Little stuff envelopes and print flyers. I wrote a research paper about private household workers because she worked with the CNAs who now assist her. She is my lode star; she is my rock star. My mother is speechless. I must lift my voice!
—Julianne Malveaux
