July-August 2021 | Health

‘She’s still my mom’

Two years ago, Holly Gross was diagnosed with ALS, a disease she calls ‘a monster with no mercy.’ As her husband struggles with Parkinson’s, it’s her sons who mostly take care of her. She can’t use her voice, but she talks to them. She can’t move, but she keeps them on track. All they want now is more time with her.

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From left to right: Jake, Jim, Holly and Nicholas Gross outside of their Kensington home. Photo by Lisa Helfert

Early one Saturday morning this past spring, Holly Gross wanted to make sure her son Nicholas, then a senior at Bethesda-Chevy Chase High School, was up and getting dressed. His varsity rowing team had a regatta at 10 a.m. So she sent him a text from her bedroom down the hall: “Nicholas, wake up. It’s time for crew.”

She wrote the message by directing her eyes toward the letters on an electronic keyboard attached to a metal stand by her bed. The device lets her send texts through WhatsApp, scroll through her Facebook and Instagram pages, and ask Alexa to play her favorite music. Elton John, James Taylor, the Rolling Stones.

With the assistive technology, Holly can remind Nicholas and his brother, Jake, who just finished his junior year of college online, to do their schoolwork, avoid eating too much junk food, and to keep the house clean—she doesn’t like messes. At 55, she cannot speak, walk or move, but even though her sons are caring for her these days, she’s the one in charge. “If I tell her I’m going to be up at 7 for crew or something…she automatically wakes up at that time somehow—with some superpower or something,” Nicholas says. “She’s still my mom.”

The first sign that something was wrong occurred on Thanksgiving Day in 2018. Holly and her husband, Jim, were hosting dinner for 14 people—a small group compared with the 40 or so they usually had over—and she couldn’t project her voice above the noise of the crowd. People noticed that she was quieter and sounded hoarse. As concierge manager of West End Plastic Surgery in D.C., she spent a lot of time talking to clients, and suddenly found herself slurring her words. She thought it might be Bell’s palsy or Botox poisoning and started meeting with specialists—neurologists, endocrinologists—who ruled out possible causes, such as a stroke, a brain tumor, multiple sclerosis and Parkinson’s disease. But her symptoms kept getting worse.

In July 2019, during an appointment at Johns Hopkins Hospital in Baltimore, Holly got the news she had hoped she would never hear. Her younger sister, Angela Woods, will never forget the text Holly sent her. All it said was: ALS.

Nicholas, a recent B-CC High School graduate, with his mom, Holly. Photo by Lisa Helfert

Holly’s sons have her schedule down to a science: A nurse comes to their house in Kensington every weekday morning to give her a sponge bath, dress her and administer the medicines she takes when she wakes up. Then one of the aides the family hired takes over at 10 a.m. and leaves at 5. After that, one of Holly’s friends usually comes and stays until about 7:30. Before her illness, Holly hosted happy hours on Friday afternoons to celebrate the end of the workweek. Now, the same women who used to stop by for cocktails work the machines that help keep her alive.

Even with the extra support, Nicholas, 18, and Jake, 21, are their mom’s primary caregivers. They take turns sleeping next to Holly’s hospital bed, sharing the king-sized bed in the master bedroom with their dad. The boys are the ones who lift her and suction the mucus that builds up deep in her throat since she can no longer swallow. “I was horrible at it at first,” Nicholas says of learning how to clear his mom’s throat without hurting her. “It took me awhile to get used to it.”

These days, just like before she got sick, Holly chats with her boys about their classes, activities, and whatever else is on their minds. Only now, she types and they talk. The brother who isn’t on overnight duty sits with Holly in the evening and watches CNN and TV sitcoms with her. Lately, she and Nicholas have gotten into How I Met Your Mother, and she’ll lecture him on never becoming like Barney, a womanizer. Around 9 p.m., at the end of the evening shift, they give her the medications that calm her nerves and help her sleep. There are no medicines available to halt or even significantly slow the progression of ALS.

“It’s a monster with no mercy,” Holly posted on her Facebook page last summer.

Nicholas (left) and Jake sometimes take breaks and walk over to the neighborhood basketball court. Photo by Lisa Helfert

In the morning, one of her sons carries her from the bed to her wheelchair and sets her down in her recliner in the living room. He attaches her Eyegaze tablet to the stand next to the chair so she can communicate with everyone. When she fixes her eyes on a letter, it appears on the screen. There’s also a series of preprogrammed phrases for things she says a lot: her boys’ names, I love you, I’m proud of you. Throughout the day, Holly’s sons work her nebulizer, oxygen concentrator, cough-assist machine and BiPAP, a device that helps her breathe. Some of the aides and volunteers know how to use the equipment, but some are still learning. Every night, one of the boys brings her to bed.

Their father, Jim, a lawyer, has Parkinson’s disease but helps his wife as much as he can. The 73-year-old can help Holly use the bathroom, but with his tremors and weakened muscle control he can’t carry her or use the suction device, which she sometimes needs several times an hour. “My dad wants to help so bad, but he just physically cannot,” Jake says. “And I think it kills him that he wants to be that third person who can take some weight off me and my brother’s shoulders.”

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that traps its victims in their bodies, while in most cases leaving their minds intact. Also called Lou Gehrig’s disease, it has no known cure and is always fatal. According to Johns Hopkins Medicine, ALS affects as many as 30,000 people in the U.S., about the same number as multiple sclerosis, and 5,000 cases are diagnosed every year, mostly in people between the ages of 40 and 70. Fifty percent of ALS patients live three or more years after their diagnosis; 20% live five years or longer; and up to 10% will survive more than 10 years.

Holly and her younger sister, Angela, during the Thanksgiving holiday in 2019, about four months after her diagnosis. Courtesy photo

Patients who have bulbar onset ALS, like Holly, have a worse survival outlook than those who have the more common form of the disease, according to Dr. Justin Kwan, director of the Neurodegenerative Disorders Clinic at the National Institutes of Health in Bethesda. Kwan, who is not treating Holly, says the first symptoms of bulbar onset ALS include difficulty speaking, chewing and swallowing. Soon the disease destroys the motor neurons that assist in breathing and control the muscles in the arms and legs. Kwan says about a third of all ALS cases are bulbar onset, and two-thirds of patients are diagnosed with spinal or limb onset ALS, which typically impacts the use of their arms or legs before they lose their ability to speak and eat. The first symptoms often include tripping and falling, muscle cramping and twitching, and dropping things.

Holly’s friend Dr. Delia Fine, an internist at Bethesda Physicians, was with her at the ALS Clinic at Johns Hopkins the day she got the diagnosis. As devastated as Holly was, Fine says, the first question she asked the doctor was, “Is it genetic—will my boys get it?” According to the ALS Association, 90% of the time, the cause of the disease is unknown; 5% to 10% of cases are due to genetic mutations. After undergoing testing, Holly learned that in her family there was likely no hereditary link. “Thank God [I] didn’t have it,” she says through her app.

Fine suspected that even though previous specialists hadn’t explicitly told Holly they thought she had ALS, getting an appointment at the clinic—a leading research center for the disease—likely meant that she did. “It’s pretty much the worst news you can get as a human, as a parent—it doesn’t get much worse than that as a diagnosis,” says Fine, who lives in Kensington. “It’s not something a doctor is going to tell you unless they are really, really sure that’s what it is.”

A few months after she was diagnosed, Holly went with Angela, who goes by Angel, to the Rockville headquarters of the local ALS Association chapter. Angel had learned about a support group and persuaded her sister to give it a try. Just as they pulled up in front of the building, they spotted an older man in his electric wheelchair, his body seemingly immobile. Holly was still wearing high heels and driving herself to work every day. The man in the wheelchair represented her future, one she wasn’t quite ready to face. She wouldn’t get out of the car.

The Gross family in 2014. Courtesy photo

On a windy afternoon this May, Nicholas’ crew coach is standing in his launch yelling through the bullhorn: “Shoulders stay low! Shoulders stay still!” Nicholas and his teammates are pulsing through the choppy waters of the Potomac River—he’s the stroke on the second of B-CC’s varsity racing shells, the position that comes with the most responsibility. “He sets the pace of the boat, and more,” Holly boasts through WhatsApp. His team pushes off from Thompson Boat House in D.C. five or six days a week, practicing for about three hours a day and competing in regattas on most weekends from March through the end of the school year. “It’s a brutal sport,” says coach Dan Engler. “There’s no bench. There’s no whistle. You are either in the game or you’re out.”

For Nicholas, being out on the water is the only break he gets from all the pressure at home. He can’t think about anything but rowing while he’s in the boat. His crewmates are his best friends—some have donated a portion of their allowances to the GoFundMe account set up for his mom—but they don’t really know the extent of his role as a caregiver. He doesn’t talk about that. “He wants people to see him [as] Nick Gross,” and not pity him for what he’s going through, one friend says.

Engler got a sense of how serious things are during a practice this past March, when Jake’s girlfriend, Renee, called him in an attempt to reach Nicholas. The team was on the water, about an hour away from where they usually practice. “Nicholas has to check his cellphone right away,” Renee said. “OK, but we’re in Poolesville,” the coach replied. He didn’t know that Nicholas’ mom was struggling to breathe, or that Jake feared she was about to die. Engler wanted to protect his student’s privacy, so he announced over the bullhorn that the winds were picking up and the guys needed to turn around. Nicholas had gotten a ride to practice with a teammate, so they both jumped into the car and raced toward his house. By the time they arrived, Holly’s breathing had stabilized. Nicholas thinks she panicked when Jake got called into work—that meant only Jim and the aide would be home with her—but hearing that he was on his way calmed her.

“That’s one of the things with ALS; you get emotional easier,” Nicholas says. “I still don’t think my teammates knew what happened that day.”

Nicholas and Jake have always been close. When Nicholas was a baby and Holly would put him down for a nap, his older brother was so eager to play with him that he’d march past the nursery talking loudly in hopes of waking him. From the time Nicholas was in kindergarten and Jake was in third grade, they’d get off the school bus together and run down to the cul-de-sac near their house to play football or basketball with the neighborhood kids. Jake joined the crew team at B-CC, so three years later Nicholas did, too. Jake loved having a year when they were on the same team. Renee used to joke that of course Jake thinks Nicholas is hilarious—his brother is his “mini-me.”

Holly and Jake in Boston in 2017. Courtesy photo

These days, when Holly’s friends can spare an extra half hour before they leave, the boys head to the basketball court near their house for a quick game of one-on-one. If it were up to Jake, he’d play basketball with his brother every day. “I feel like I need to release all this energy. I need to go do stuff constantly to keep my mind off of it,” he says. But it’s getting harder to convince Nicholas to go. “Now I really have to pry it out of him,” Jake says. Since crew resumed in the spring, if Nicholas has any free time in the evening he’d rather get his homework done so he can play Call of Duty on Xbox later with friends online.

“I know it sounds kind of lame, but it’s been a reset for me at times just to calm down,” he says, “because if I look into the future and think of all the things I have to do, it’s overwhelming.”

Lately, the siblings have been yelling at each other more than ever, which Jake says is the hardest thing for their mom to take—her face gets red and she starts to cry. “It breaks her heart that her condition is causing this rift between us,” he says. This past school year, the journalism and political science major at Boston University lived at home and worked a part-time job as a delivery driver for a birdseed company. Last summer he was a congressional intern.

“We both get pretty loud and competitive,” says Nicholas, who was extra busy throughout the school year deciphering college scholarship materials and running the B-CC environmental group he founded two years ago that organizes local cleanup events. Now that he’s decided on Villanova University in Pennsylvania for the fall, it’s one less thing on his mind, but that didn’t make the past year any easier. “There [were] a lot of [arguments over] who has it harder and who should have an easier schedule helping my mom and stuff.”

As difficult as the year has been on his sons, their dad worries just as much about what will happen to them when their mom is no longer around. “They love their mother very much,” he says, “and [they are] just too young…to lose [her].”

On May 8, about 30 guests attended a private graduation for Nicholas in his backyard. A friend of Holly’s contacted B-CC Principal Shelton Mooney to see if he would perform the ceremony. Photo by Lindsey Max

The procedure to put in Holly’s feeding tube took place just before the pandemic started. “If she hadn’t had that surgery the first week in March,” Angel says, “COVID hit—and she probably wouldn’t be alive because they wouldn’t have been able to take her.”

Holly’s recovery was painful and slow. Leading up to the surgery, she’d had so much trouble swallowing that her naturally thin frame had become even thinner. “If [patients] have lost a lot of weight, they have a hard time bouncing back,” says Joan Deye, a volunteer with the ALS Association for 40 years.

For a week after the operation, Nicholas handled Holly’s care by himself. She was so worried about contracting the coronavirus that she didn’t want anyone coming over. A nurse had shown the high school junior how to work the feeding tube in his mom’s abdomen and the port in her chest for the medication she was taking at the time. “I had to pull up all the bandages and stuff, and pull up the needle because the nurses couldn’t come,” he says.

When Jake came home after his college closed for COVID, Nicholas taught him what to do and the boys began splitting duties. Then Angel quarantined for two weeks and came up from North Carolina to help. Holly, who’s five years older than her sister, had been like a mother figure to Angel while growing up. Holly was the product of their mom’s first marriage, which ended when Holly was about 3. Their mother’s second husband—Angel’s father—legally adopted Holly, but that marriage fell apart, too, and he left. The girls and their mother moved several times. At one point they lived on food stamps, and the girls shared a mattress and got free lunch at school. “Now, when I look back, it was totally normal that when [Holly] went to spend the night at a friend’s that I came with [her],” Angel says. “It was totally normal that when she went on a date that I was going, too.” 

The three eventually moved to Delaware, but Angel left home at 16. Holly stayed to take care of their mother. “She’d make sure the litter box was clean, the bills were paid,” Angel says.

Holly no longer has a relationship with her mom or with the man who adopted her. She’s close to her four half-brothers from her biological father’s second marriage. Two of them, who live in Ohio, “try and come once a month,” she types.

Photo by Lindsey Max

Holly and Jim met on the beach in Rehoboth in 1995. She was 29, managing a day spa in Wilmington, Delaware, and newly divorced after a brief marriage. Jim, who was 47, had also been married previously, but neither had children and Holly was eager to be a mom. After dating for about a year, she moved into his brownstone in D.C., and in 1997 they got married in the Bahamas. A year later, they moved to Potomac and Holly became pregnant with Jake. In 2004, a year after Nicholas was born, Jim started noticing a tremor in his left arm that he thought was the result of playing too much racquetball. Soon after, he was diagnosed with Parkinson’s.

The following year, the family moved into a custom home they’d built in Chevy Chase, but as Jim’s illness progressed, he had to pass on more work to other attorneys. Holly had been a stay-at-home mom, PTA president, and a frequent fundraiser for her kids’ schools. When Nicholas started middle school, she took a job as an office manager at a dermatologist’s office. Over time, the family began to rely on her salary. With two college tuitions looming and their savings depleting, Holly and

Jim decided to sell the home they loved and downsize to a small 1950s ranch house a mile away. The lavish holiday dinners the couple regularly hosted became more subdued, and the get-togethers Holly was known for became more sporadic, but her circle of friends was still as big as ever.

Then came her diagnosis. Jim couldn’t go to the ALS clinic in Baltimore with Holly that day—his own symptoms have worsened, so he rarely ventures beyond his home and Chevy Chase office—but he’ll never forget when he saw her at home. “I felt like that scene in that movie about Stephen Hawking [The Theory of Everything],” he says, “when the doctor comes in and says, ‘There’s nothing more we can do, I’m sorry,’ and walks off, and Stephen Hawking was just left there sitting in the hall.”

Nicholas was used to Holly seeing different doctors about her voice, but she’d never come home in tears. When she told him she had ALS, he didn’t remember that five years earlier he and his mom had done the ALS Ice Bucket Challenge together. “I had to ask Jake what [ALS] was,” Nicholas says. “He knew enough to tell me it was terminal, and it was bad.”

The next day, Holly and the boys flew to Aruba for a short vacation they’d been planning for months. She wanted to keep things as normal as possible. For her birthday in January 2020, she went with her sister and some friends to Spain, Gibraltar and Morocco. She worked until late February, when it was no longer safe for her to drive into D.C. and her voice, especially on the phone, had become mostly unintelligible. 

By last summer, Holly needed help walking. In August, even with one of her sons holding her up, she fell in the bathroom and knocked the sink off the wall. After that, she relied more on her wheelchair. Angel had been coming up about every three weeks since the start of COVID. But once Holly felt comfortable having other people over, one of her longtime friends, Carly Glazier, created a “Hanging with Holly” page on SignUpGenius. “I think there’s probably any one of us that you talk to who would say, ‘Holly’s my best friend,’ ” says Glazier, who met Holly at a Gymboree class when their oldest sons were babies. The two women bonded right away over being “girly girls” who loved Barbies yet found themselves the mothers of boys. “[Holly] mastered being a mom early on,” says Glazier, who lives in Bethesda. “Some of us are still figuring it out.”

Jim calls his wife’s support system their “band of angels.” Often the women will go grocery shopping for the family or cover small bills and expenses. They’ve helped Nicholas follow up on scholarship information and handled insurance claims. They fill the slots on a meal calendar on Holly’s CaringBridge page and bring over home-cooked dinners most nights of the week. (The other nights, Nicholas, who used to cook with his mom, is the family chef—his specialty is pasta from scratch.)

“Holly, before she got ill, was kind of the center—she was the one who organized a lot of things and really kept this group together,” says Iresha Fletcher, who lives in Chevy Chase. Fletcher became Holly’s unofficial hair colorist even though she’d never done it before. “The first time I did it, I missed a big patch in the back and we were laughing about it,” she says, “so the next time I was very careful.”

Lauren Itzkowitz, who moved to Wilmington, North Carolina, several years ago, now drives up at least one weekend a month to visit Holly. She recalls her first trip back after Holly started experimenting with the eye-tracking tablet, when Holly was typing out a long text to Jake complaining about Jim. Something went wrong, and the tablet read the message out loud—at a really high volume, in its monotone computer voice, over and over again. “ ‘Your father kept me up all night long with his snoring’—it repeated like six times,” Itzkowitz says. Looking back on that day, Holly says through WhatsApp, “I was laughing (my version of laughing). Jim rolled his eyes. Lauren wanted to crawl under a table.”

On Sunday afternoons, two of Holly’s friends give her a full bath and wash her hair. They blast George Harrison’s “My Sweet Lord” and The Beatles’ “Let It Be,” two of her favorite songs. A couple of the women on the Sunday shift are divorced, and they’ll use the time to update Holly on their dating lives. Don’t think so much about finding the perfect mate, she’ll tell them. Just enjoy yourself—you never know what the future holds.

Wearing a blue cap and gown, Nicholas makes his way down his family’s small slate patio and up to the patch of grass where B-CC Principal Shelton Mooney, Assistant Principal Samuel Levine, and one of Nicholas’ favorite teachers, John Zehner, are waiting for him in their faculty robes. It’s a breezy afternoon in May, and Mooney has brought a recording of the B-CC band playing “Pomp and Circumstance” to accompany Nicholas’ walk down the makeshift aisle, past the 30 or so guests sitting in folding chairs. But with the short distance and Nicholas’ long strides, barely a stanza plays before he’s standing next to his principal.

Mooney proclaims Nicholas the valedictorian of his private ceremony and tells him, “I look out right now and see people who are here to support you, support your family, because it’s the right thing to do and we want to help you succeed in life.” After Mooney gives a short speech, Holly watches as her son accepts his high school diploma and shakes his principal’s hand. 

One of Holly’s friends had contacted Mooney weeks earlier to ask if he would perform a graduation at the family’s home ahead of the schoolwide graduation scheduled for June. Doctors had advised against bringing Holly to any large public events, even something outdoors, because of her weakened immune system. She was happy to have the festivities in her backyard. Her only request: that they hold off on the celebration until Jake was done with finals. 

Nicholas’ crewmates fill two rows of seats, and Holly’s friends fill the rest. Her boys’ second grade teacher, Ottilie Droggitis, drove down from her new home in Maine. She’d been a regular at Holly’s happy hours—everyone Holly knew had a standing invitation. Holly’s devoted nursing assistant, a soft-spoken woman affectionately known as “Ms. G,” has brought her 12-year-old son. “I tell him every day, ‘I would like you to be like Nick,’ ” she says, though she usually refers to Nicholas simply as “N.” That’s what Holly started calling him once it became too difficult for her to say his name.

After the ceremony, guests mingle around the table of food and drinks that neighbors set up on the far side of the patio. For several minutes, Holly is left in her wheelchair about 10 feet away, still facing the grassy area where the principal had given Nicholas his diploma. All the action is happening behind her and she wants to be part of it. “Turn me around,” she types.

Jim says Holly’s dying wish is for her sons to graduate from college—she never got her degree. “That’s what she wants for them, and that’s what I want for her,” he says, “to have her wish fulfilled.” But for both boys to go away to school, the family will need to have round-the-clock caregivers. That costs money they don’t have. When asked what she worries about most for her boys, Holly doesn’t type a response. The question only makes her cry.

According to the ALS Association, when patients are in the late stages of the illness, the out-of-pocket cost of care is typically around $250,000 a year. “It’s called the bankruptcy disease,” Jim says. Last summer, Joan Deye arranged for a ramp and sidewalk to be installed at the Grosses’ house at no cost to the family. She’d reached out to a man she knew on the board of directors of The Invisible Hand Foundation, a D.C.-based group of anonymous donors that helps financially distressed families in times of crisis. It was the same man Holly had seen in his wheelchair in the ALS Association parking lot soon after she was diagnosed.

On a Saturday night in late February 2020, Holly looked beautiful and vibrant and full of life. She’d always been fashionable, and this evening was no different—she’d gone shopping with her friend Iresha to find the perfect cocktail dress. Holly’s niece, Angel’s daughter, had done her hair and makeup. She couldn’t wear heels, but “could still walk,” she says through the app, “no dancing.” She “wore a cute pair of sparkly sneakers,” she types, and calls it a “magical night.”

Angel and a group of Holly’s friends had quickly organized a fundraiser and silent auction for Holly and the family at the now-shuttered Loft at 4935 in Bethesda. More than 150 guests waited in line to get in. “The coatracks kept falling over because there were so many coats,” Angel says.

Several teachers from B-CC came to the event, including Nicholas’ crew coach. Holly’s friend Libby Nealis got the band she sings with to perform for free. Carly Glazier’s husband, Mitch, chairman and CEO of the Recording Industry Association of America, arranged for one gold and one platinum record to be auctioned off. Other friends donated weeklong stays at their vacation homes, dinner parties, Capitals tickets—about 60 items in all. Nicholas auctioned off his signed Alex Ovechkin jersey, the one his mom gave him for Christmas when he was 11. She was hesitant at first about him donating it, he says, “but she understood that I was doing it to support her.” They raised more than $40,000 for Holly’s care. A year later, The Washington Post ran a story about Nicholas donating his prized jersey that night and included a photo of him holding it up when he was a kid. The Capitals saw the story and sent him another one.

Today, when someone clicks on Holly’s GoFundMe website, the first thing they see is a glamorous black-and-white photo of Holly taken several years ago. To the right of the picture is the amount raised to date. It looks like a lot of money, but it gets spent as soon as it comes in, says Angel, who runs the page. Their latest wish is to get a Hoyer lift, a sling-like contraption to move Holly from her bed to her wheelchair and back again. It’s covered by insurance, but they’ll have to widen the doorways and the shower area in the bathroom. They’ll likely have to move a wall or two. Insurance pays for some of the expenses but not all. Soon Holly will need paid caregivers 24/7, and “no insurance covers that,” Deye says.

For Holly, there’s always something coming up that gives her the strength to keep going: another Thanksgiving, Christmas, Easter with her husband and sons. In September, Nicholas and Jake are slated to be signature speakers at the virtual Dine to Defeat ALS gala sponsored by the local chapter of the ALS Association. Holly wants to see her boys deliver their speeches and share the family’s story. She’d also like to help raise money for ALS research. It’s “shocking,” she types, “that they haven’t found a cure…look how quickly they did for [COVID].”

Nicholas and Jake just want to have their mom around as long as they can. “She’s pushing past what anyone thought she could do—which is amazing,” Nicholas says. “My mindset is, ‘enjoy this now because it will get harder later,’ and ‘enjoy this now because you won’t have this later.’ ”

Amy Halpern is a journalist who has worked in print and television news, and as the associate producer of an Emmy award-winning documentary. She lives in Potomac.