Perspective

The Truth About Caregiving: Your Determination Isn’t Enough

After caring for my ill son, my dying husband and my elderly mother, I’ve learned that you can fight only so hard to save a loved one
(Derek Abella for The Washington Post)

The text with the video attachment landed in the middle of an important work meeting on Zoom. I should have stayed focused on the discussion at hand, but instead I let my finger hover over the image on the screen and then let it tap “play.”

My mother, 85 and her mind riddled by dementia, was dancing at a happy hour at the assisted-living center near me where she lives. There she was: her hair perfectly coifed, still jet black, the slight swivel of the hips, the intentional way she tapped her Mary Jane-clad feet in time to “When the Saints Go Marching In.” My mother. The woman who had come to the United States from Ireland as a new bride in 1957 — not the pale imitation of the woman I had last seen dance this way at her grandson’s wedding in August 2019, the night before a stroke would set off the tumbling dominoes of dementia. The 15-second snippet would carry me — giddy — through the rest of the day’s meetings. I eagerly looked forward to visiting her that night to hear her tell me about the afternoon that had clearly brought her so much joy.

“Mom, I’m here. It’s Tracy,” I called as I knocked on the door of her apartment in the Riderwood retirement community in Silver Spring, Md. The doors are not locked, but I am always mindful to knock and announce my presence before entering the apartment. Even as compromised as she is, she deserves some semblance of privacy and dignity.

I moved through the kitchenette and living room toward her spacious bedroom and found her sitting in bed propped up with pillows. “Why would you even bother to come see me?” she practically spat. “I’ve been sitting alone in this apartment since Friday. Nothing to do but stare at the four walls. Don’t bother to come at all if you’re going to treat me this way.”

It wasn’t the words that were said but instead the way she said them — in what my sister and I have come to refer to as “the cold voice.” Anyone who hears my mother speak this way would swear she was in full control of her faculties; she conveys a certitude that sometimes makes me question my own recollection of the facts.

I could have pointed out that this was Thursday and that I had been over Saturday, Sunday and Tuesday or that in addition to the wonderful staff, she’d had daily visits from her private caregivers. But I had learned that rebuttal is useless, reasoning is pointless, so I went for distraction and redirection.

Acting as if she had said nothing to me, I went over and gave her a peck on the cheek. In my most upbeat, encouraging voice — the one I had used to cajole 3-year-old twins to try a new food and which I thought I had retired permanently two decades ago — I said, “Mom, I heard you were cutting a rug at the happy hour today. Was the band good?”

“What are you talking about?” Still the cold voice.

“Did you dance to ‘When the Saints Go Marching In’? I heard you stole the show on the dance floor.”

“The band was very good.” Her tone was just a touch softer. “Your father really enjoyed them.” (My father’s been dead for nine years, but we were making progress.)

“Well, I think they’re doing happy hours every Thursday afternoon, so you should absolutely go; they seem fun.”

“They’re bringing in a different band each week; I might not like them all.”

“Well, you don’t know if you don’t try. You can always decide next Thursday if you’re up to going.”

“Yes, that’s what I’ll do. We did all have a ball today. Everyone here is so nice, and it’s such a beautiful place.” She said this with a smile on her face and warmth in her voice. And in the moment, I was happy that she was happy.

The author, Tracy Grant, dancing with her mother, Alice Ramsey, at the wedding of Grant’s son Christopher in 2019. (Marvin Joseph)

I might not always have found such pleasure in a small victory. I have played the role of caregiver to loved ones who were seriously ill three times in my life — and I did not used to believe in settling for minor triumphs. As a 30-something mother of critically premature twins, I convinced myself that the sheer power of love could help one of my boys overcome a diagnosis that had left nurses in tears and doctors recoiling. Ten years later, I brought the same self-styled hubris to my husband’s Stage 4 cancer diagnosis. A reporter’s doggedness, I thought, would be my secret weapon. If I found the right doctor, the right hospital, the right treatment, I could rewrite the ending. Someone had to be in the 5 percent that survived past five years, right?

When I moved my mother across the country at the start of the pandemic, I was more than two decades past that premature birth and more than a decade past the cancer diagnosis. I was about to become a primary caregiver again, and yet none of this felt familiar. The disease itself was different — dementia cannot, of course, be defeated — but so was I. Once I believed that if I cared enough, I could solve any problem. Now I knew this had been a fiction all along.

“But it’s too soon; what about Baby B?”

That was how I responded to my OB/GYN announcing my twins were going to be born this day, a cool, crisp November afternoon, even though they weren’t due until mid-January.

“Baby A isn’t moving much, isn’t growing; he’ll do better out. And Baby B is bigger; he’ll be fine.”

It was my personal Sophie’s Choice: bring my boys into the world too early to help save Baby A, or let them stay inside to let Baby B’s lungs, blood vessels and other organs develop while Baby A atrophied. Except my doctor’s tone of voice made it clear there really was no choice. Within three hours and via emergency C-section, Baby A, who would become Andrew, and Baby B, Christopher, would enter the world — whether they, I, their dad or the world was ready.

Andrew, weighing just 2 pounds 13 ounces, was born first; he looked like every March of Dimes poster you’ve ever seen. Fragile, birdlike, translucent and with a cry like a billy goat. Christopher came a minute later. At 4 pounds 11 ounces, he looked like a chubby-cheeked Gerber baby compared to his brother.

Both were sent immediately to the neonatal intensive care unit where, over the next week, they would be fed by tubes; food intake would be charted, diapers weighed, tests conducted. An electrocardiogram followed by an ultrasound revealed that Christopher had two holes in his heart. It’s a testament to the complexity of the diagnosis to come that this would be a footnote in our family story.

The complication of prematurity that reporter-me had become most obsessed with in the waning weeks of my pregnancy, when it had become all but certain that these babies would arrive early, had been intracranial hemorrhage. Turns out that the atmospheric pressure in utero is different from that out in the “real world,” and the linings of blood vessels, particularly those in the brain, don’t typically thicken enough to deal with outside air until about 34 weeks of gestation. My boys were born at 32.5 weeks. What can happen is that blood leaches out of the weakened blood vessels, bathing the brain in blood. In the days after the boys were born, I asked every doctor I encountered about intracranial hemorrhage. My hand was patted. Scans would be done in due time, when the boys’ overall health was more stable, but I shouldn’t worry.

Due time turned out to be the week after their birth, and by then, to be honest, we had settled into the rhythm and the routine of the NICU. I pumped breast milk and learned about kangaroo care, cuddling the boys next to my bare skin; we got used to the nurses who were relentlessly upbeat and those who acted as if optimism were to be avoided at all cost lest it lead to heartbreak.

“It’s okay for you to be angry with God,” one nurse, who was a nun, told me. “I’m angry with God today.”

When Bill and I arrived at the NICU on that Tuesday morning, Day 8 of our boys’ lives, we were greeted by a grim-faced team of doctors who ushered us into a windowless conference room that easily could have been mistaken for a book-lined broom closet. “We got the results of the brain scans. Christopher had a Grade 1 intracranial hemorrhage. We grade them from 1 to 4; Grade 1 bleeds normally resolve by themselves; the brain heals. He may need some intervention, but you probably won’t see any long-term impacts.”

I wanted to ask more questions about Christopher: How did this affect the issue with his heart? What kind of intervention? What were the possible long-term implications of a Grade 1 bleed? But I had failed to read the room. None of the doctors wanted to talk about Christopher. That was news to get out of the way quickly; it was not news that required a team of doctors to pull parents into a private room, a place where their reaction to the unspeakable would be shielded from other parents visiting their sick babies.

“Andrew has had a high Grade 3 bleed. Either just before or after his birth, he had a massive hemorrhage on the left side of his brain.” The rest of the conversation I recall only in snatches of words and phrases. “Profound.” “Brain damage.” “Could be blind.” “Deaf.” “May never walk or talk.” “Will require intervention.” “Prognosis very unclear.” “So very sorry.”

The sheer sonic shock of the news left me unable to cry, unable to speak. All the questions I had regarding Christopher just crumpled inside me. The magnitude of the gut punch was impossible to absorb. But as Bill and I left the claustrophobic conference room and walked over to the incubator where Andrew lay, tears started leaking down my cheeks. When we got there, Andrew was on his belly, lifting his head, moving his arms and legs purposefully as if trying to crawl out of the Lucite box that was his home. Squealing in frustration at his inability to do that.

Bill turned and saw the tears. “Why are you crying?” He sounded frustrated and bemused; I was flummoxed and annoyed. “Did you hear what they said in there? He is going to have such a hard life.”

“Look at him; there is nothing wrong with that child. I don’t care what they say.” He then slid his hand into the incubator to fist bump his firstborn. “Isn’t that right, big guy?”

Bill’s take on Andrew’s situation was unique. Medical professionals over the next few weeks would only reiterate how dire the prognosis was. The day Andrew was diagnosed, one of his nurses, a nun, came up, hugged me and said, “It’s okay for you to be angry with God. I’m angry with God today.”

Several days later we ran into a doctor in my OB/GYN practice while waiting for an elevator. She asked how the boys were doing. “Okay,” I replied. “Christopher was born with two holes in his heart.” “Oh, those will resolve by the time he’s 1,” she replied confidently. “And Andrew had a Grade 3 ICH,” I added. She took two steps back, trying to get away from us as if this kind of catastrophic diagnosis were contagious.

We had chosen our pediatrician because he’d had premature twins, one of whom had some long-term but surmountable issues. Two days after the boys were released from the NICU, we brought them for their first appointment. The doctor’s demeanor was grim. He outlined tests, interventions, things to look for that would be concerning. I was trying desperately to cling to some reason for hope. “But your boy was born with some challenges and he’s doing well now, right?” I prompted. “Yes,” he replied, “but my boy was never as sick as yours is.” We got a new pediatrician.

What everyone recommended for Andrew was “early intervention”: having a pediatric physical therapist start working on assessments and exercises as soon as possible. When you have a medically fragile child in a county where the well-educated population pays high taxes, you learn that there are abundant services. And so, when Andrew was about 10 weeks old, he had his first physical therapy session with a lovely woman who got him to laugh while she moved his arms and legs as he lay on his back on a colorful play mat in our family room. She commented on how he looked at her face, followed her hands with his eyes, and mentioned that the way he arched and scooted on his back was a common practice that preemies developed that “we need to break him of.”

As the 45-minute session ended, this chatty, competent, wiry, middle-aged PT looked at the file she had on Andrew and sighed in deep frustration. “Is something wrong?” I asked nervously.

“I just hate it when they mess up the paperwork. How hard is it to get a diagnosis right?”

“What does the paperwork say? What’s wrong?”

“Well, it says Andrew had a Grade 3 bleed.”

“Oh, that’s not wrong. I have the scans of the left side of his brain. I can show you them if you need to see them.”

“Mrs. Grant, I’ve been doing this for 25 years. I work with a lot of children who have high-level brain bleeds. Let me tell you: I have never seen an infant with a Grade 3 bleed who looks like your son. Your boy is a miracle.”

There would be years of intervention, tests, visits with pediatric specialists. Andrew would walk and talk later than his brother; he would learn to ride a bike later; inexplicably, he would never learn to pump his legs to swing on a swing. But ultimately what had seemed to be the worst news we could ever receive turned out to be a story with the happiest of endings. And an idea took root: that fierce love and dogged determination could overcome all. As Bill had said so resolutely at the outset, “There is nothing wrong with that child.”

Christmas Eve 2006 dawned with a thud and a cry. I was downstairs making coffee when something hard hit the floor upstairs. “Tracy!”

I don’t recall where Andrew and Christopher, just turned 11, were but probably in the basement playing video games. There are many wonderful things about twins, and the ability to entertain each other is high on that list. At this stage of our lives, it was a necessity. Since a July evening when a dizzy spell started a month-long cascade of tests showing that Bill had three tumors in his brain and a large one in his lung, the boys — for the first time in their lives — were not the center of my universe.

I raced up the stairs and found Bill crumpled on the floor next to our bed. “I can’t move my right arm and leg,” he said. I placed my shoulder under his right side and helped him get to a sitting position on the side of the bed. And in a split second, I felt singular abject rage. Unexpressed but surging through my being was one thought: “Christmas Eve. Are you f---ing kidding me, God? You couldn’t let us have one last Christmas. You’re taking my husband. You’re taking my sons’ father … but that’s not enough? You need to take Christmas too?”

Instead, I phoned the on-call oncologist at MedStar Georgetown University Hospital, where Bill had been treated surgically with chemotherapy and state-of-the-art CyberKnife radiation over the previous four months. Stage 4 melanoma had been the diagnosis. About as grim as diagnoses come. He was 53 years old. We had been married 19 years.

The outcome of our earlier crisis sat next to me at the kitchen table each morning: two beautiful, healthy boys. We had beaten the odds once, I told myself; we would do it again.

“He needs to come to the ER right away,” I was told. “But, doctor,” I said, “it’s Christmas Eve.” It was a plea and a prayer, born out of knowing how hospitals work. They would want to run scans and tests, but they would not do those on Christmas Eve or Christmas Day. And if they did, the results wouldn’t be quickly or definitively read.

Up until this conversation, I had not allowed the certainty of the diagnosis to take hold. In fact, I had seen it as an enormous obstacle to overcome, a cruel twist of fate but not a death sentence. I made calls to the leading melanoma researchers at the National Institutes of Health, Johns Hopkins University, MD Anderson Cancer Center and the University of Pennsylvania. My job was to keep Bill alive long enough for a cure to be developed. I asked about experimental treatments, was told they might not be covered by insurance and made clear that I would sell my soul for a treatment that might work. For the briefest of moments, I allowed myself to feel sorry for our family. We had gone through hell with the boys’ premature births; why were we being visited by medical demons again? And yet, the outcome of that earlier crisis sat next to me at the kitchen table each morning: two beautiful, healthy boys. We had beaten the odds once, I told myself; we would do it again.

But by the time I found myself on the phone with Georgetown Hospital on Christmas Eve, I knew he was dying; I knew we were counting months, not years. I had not, however, given voice to the timeline. Now, speaking to the doctor, I drew my voice down to a whisper. “We have 11-year-old sons,” I reminded him. “What if this is his last … ?”

The doctor sighed heavily, cut me off and said, “Call if he gets worse, and then you’ll have to come in.”

We would, somehow, make it through Christmas morning with the boys squealing in glee around their dad, who held his coffee unsteadily in his left hand. Christmas dinner involved having Bill’s sisters and some of their children over. I managed to dress Bill, put dinner on the table and marvel that he ate as if he were ravenous. He had, over the course of 36 hours, figured out how to use his good arm and leg to move around the house so well that he stood at the front door to wave goodbye as they left.

“I think that went really well,” he said, and looked down at me and gave me a kiss. The oncologist would, after the end, tell me that he thought we were absolutely crazy to not come into the hospital on Christmas Eve. He was no doubt right, medically. But if Bill had been in the hospital for his last Christmas, it would not have changed the outcome; it would simply have deprived him of Christmas morning with his boys, Christmas dinner with his sisters, and a few more days of believing that maybe, just maybe, we could beat this thing.

The author’s husband, Bill, with their twins, Andrew, left, and Christopher, in June 2006. Bill was diagnosed with cancer two months later. (Courtesy of Tracy Grant)

The cause of the paralysis was eventually seen on a devastating scan. Tumors up and down his spine. Literally dozens of tumors that had not been in his body six weeks before when the last set of scans had shown “stable disease.”

“You should consider hospice at this point,” the oncologist intoned grimly.

“I am 53 years old; I have a wife and two boys; I am not giving up,” Bill replied evenly.

“People often live longer, do better on hospice care, have better quality of life,” the doctor pushed back.

“Did you hear what he said?” I snapped, an overly protective lioness. “We’ll need to discuss what the treatment options are.”

I no longer believed it could be beaten; but I couldn’t let Bill think I had stopped believing. “I’m not doing hospice; I’m not leaving you a widow at 43,” he said to me after the doctor walked out of the hospital room. He lived another 2½ months and died nine days before my 43rd birthday.

When my mom suffered a stroke on Aug. 11, 2019, I knew enough to be grateful. I thanked God that she was stricken in the hours after Christopher’s wedding reception had concluded. She had posed for pictures, glowed at the praise heaped on both of her grandsons and danced the night away. Perhaps the God who had decided to visit tragedy on us in the hours before Christmas a dozen years earlier had fine-tuned his sense of timing.

The morning after the wedding, my sister, who was staying at Mom’s house with her husband, reported that Mom wasn’t feeling well. I was largely unconcerned; lots of activity, I assumed, had taken it out of her. When I stopped to say goodbye before heading to the airport, I was stunned. Stunned at how profound her confusion was and stunned that she wasn’t already in the emergency room.

After several days in the hospital and another week in rehab, Mom seemed to be recovering well, and the idea of her continuing to live an active life on her own — driving, meeting with friends, going to the theater — seemed possible. However, over the next six months, she would experience a precipitous, inexorable decline of cognition. Our nightly calls would increasingly require repeated explanations of how to hang up the phone. On good nights, it took three or four attempts. On bad nights, I would text the neighbor to go over and help her. Once, about 40 minutes into a conversation about how her TV was broken and she couldn’t change the channel, it occurred to me that she was trying to change the channel with the phone.

We started with in-home help and occupational therapy. Wonderful people who were caring and attentive. But we knew Mom needed to be closer to family. Retirement communities were researched, and plans were made for Mom to move from Chicago to the D.C. area, where I live. And then the pandemic hit.

The email landed in my inbox as I sat among two dozen socially distanced colleagues at scrubbed but circa 2002 desks in a dingy office park in Laurel, Md. That we were all there was nothing short of a miracle. Eight days earlier, the vast majority of the newsroom of The Washington Post had been hastily sent home to wait out a global pandemic that would change just about everything for just about everyone.

I had been tasked with setting up an emergency, redundant newsroom. Computers had been ordered and installed. High-speed Internet had been routed. Those desks had been scrubbed and separated. Chairs had been transported from a sleek office blocks from the White House. Air purifiers had just about eliminated the smell of stale ink from printing presses that had not whirred to life producing community newspapers for a decade. Today, we were doing a dry run. Seeing if we could actually produce the website and newspaper.

Ping.

“Does this change your plans for your mom?” read the email from my son’s mother-in-law, a relationship still sufficiently new that whenever I realize Christopher has a mother-in-law, I have to stop and let the thought pinball around my consciousness for a few moments.

The email included a link to a Chicago Tribune story. Illinois Gov. J.B. Pritzker was “locking down” the state. As the pandemic took hold of the country, I had made the decision to bring my frail, 84-year-old mother to live temporarily with me. The plan had been for that to happen the following weekend, after the emergency newsroom had been tested, after I’d had some time to talk to my mom about the plan and prepare her to leave the city she had lived in since coming to America from Ireland.

It was just after 2 p.m. on a Friday; the last flight to Chicago out of BWI was at 3:55. I had to make that flight. I had to get to Chicago. I had no idea how I would get back to Maryland. In those early days of the pandemic and “stay at home” orders, there was more confusion than clarity. I presumed — incorrectly it would turn out — that the airports would be shut down. But I took solace in a line in the Trib story: “Interstate highways will remain open.” At least I could make the 14-hour drive with mom, I thought. Followed immediately by “Sweet Jesus.”

I booked the Southwest Airlines flight as I bolted from the newsroom. And booked two seats on a return flight the next day just in case. Ready or not, my mom was coming to my home.

The author, who moved her mother from Chicago to the D.C. area at the outset of the pandemic. (Marvin Joseph/The Washington Post)

Mom would live in my house for five months. Every aspect of life would change. I would tell executive editor Marty Baron, one of the most powerful people in American journalism, that I couldn’t meet after 5:30 p.m. because Mom expected dinner on the table at 6:15 and no later.

She would calmly announce at breakfast one morning that she wanted the windows in the bedroom closed and locked. “But it’s nice and cool, and I know you like the breeze coming into the house,” I replied.

“The men come in the windows at night, and that scares me,” she replied.

“But, Mom, you’re on the second floor; no one can get into your bedroom.”

“That’s fine for you to say. They don’t come into your bedroom and bother you.”

So the windows remained closed and locked. I confirmed that for her every night. Like a mother checking for monsters under the bed and in the closets.

Most of the time she didn’t know the day of the week or even the year. But there were moments when the complexity of the brain was on full display. Asked who the president was, she would purse her lips and spit out a single word: TRUMP. Asked at a doctor’s office for her Social Security number, she could recite it without a pause.

However, she couldn’t make new memories, the doctors explained, and her executive functioning — remembering if she had taken medication, ability to look at a calendar and understand it — were all but gone. And she knew it: Asked by a neurologist what she was experiencing, her eloquence left me speechless. “It feels like my mind is shrinking, doctor.”

I’m not sure what I knew about dementia before my mother’s stroke, but it had not registered to me that the cruelty of the disease was that people are aware they are losing their own minds. Some, like my mother, try to fight it, working hard to cling to what is left of their sense of self. My mom knew what she should be able to do, and she knew she couldn’t do it; that dissonance led to delusions, anger, frustration, allegations, recrimination. Lather. Rinse. Repeat.

This time, unlike with Andrew or Bill, I wasn’t sure what to pray for. For Andrew, it was a “normal” life. (Yes, I know, but that’s what the prayer was. It’s what every parent’s prayer would be.) For Bill, it was for “one more.” One more night of TV and pizza in the family room. One more game of cards with the boys. One more chance to make him laugh.

But two years after her stroke, I barely recognize my mom. She wears diapers. I bathe her on the three or four days each week when I visit her. I remind her that she doesn’t need to put shoes on when she’s going to take a shower.

The decline has been in some ways so quick and in others so excruciatingly slow. She still fights “to get better” even as she talks about speaking with her dead siblings and the people who come into her apartment to steal her chocolates and potato chips.

But each Sunday, we have dinner together. She usually picks from three choices: chicken quesadilla, pizza, Potbelly sandwiches. When the weather is good, we dine alfresco in the courtyard at Riderwood. Sometimes we get fancy and have “fizzy water” with our meal. We always bring crackers to feed the ducks despite the stern warnings prohibiting such misbehavior.

And I bring my iPhone and call up a playlist of standards. “It Was a Very Good Year.” “Georgia on My Mind.” “Danny Boy.” “America the Beautiful.” On good nights her head bobs to the music, and she sings along to the refrains. Not all nights are good, but we always end with her favorite song, “Let It Be.”

She knows all the words, and beyond knowing the words she seems to understand them as well. Or maybe that’s just me, trying to find something there that isn’t.

I know there will come the evening when I queue up the song and she will not know it. And it will be then, perhaps, that the words will matter most. Not for her, but for me, as we enter the final stage of caregiving. With Andrew and Bill, I allowed myself the delusion that there were aspects of their care that I could control. I have no such delusions now.

But the truth is that I am no less and no more powerful in caring for my mother than I was for my son and my husband. No more or less in control than I ever was. Just more aware of the limitations of being a caregiver — which is to say, the limitations of being human.

Let it be. Let it be. Let it be. Let it be. There will be an answer. Let it be.

Alice Ramsey on the back porch of her daughter’s house, where she lived for five months during the pandemic. (Courtesy of Tracy Grant)

Tracy Grant is managing editor of The Post.

Art direction and design by Audrey Valbuena. Photo editing by Dudley Brooks.

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