When deception is compassionate

I usually write about the intersection of business and technology, but this post is more personal. If you follow me for my tech insights, don’t worry — I’ve got more writing like that to come! Hopefully, you’ll find some variety interesting. Let me know what you think in the comments.

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The first time we told my dad he wasn’t going to get a new heart, we were sitting on our patio. It was a sunny, warm spring day in North Carolina, and the flower beds surrounding us were flush with the first signs of fresh flora. The yard and trees were vibrantly green, suddenly alive after their winter-long dormancy. Despite all the ingredients needed for a peaceful scene, I was filled with dread. My fiancée and I had rehearsed how to relay this news, but there was no easy segue that would soften the blow. 

The centerpiece of our back yard in full bloom

“The doctors decided you aren’t a good candidate for a transplant,” our choreographed explanation abruptly ended. Speaking these words out loud only intensified our sadness.

He swore, then sobbed. 

—

I first learned about heart disease in third grade. My mom picked me up from school and revealed that my dad was in the hospital. “He had a problem with his heart,” she explained, “but he’ll be fine.”

He returned to work during the week, spent his weekends fixing up junk cars to make them slightly less junky, and plowed the snow out of parking lots in the winter for extra money. We’d go on road trips to Vermont and he was the president of the local school board. My dad was fine.

But there were also nights when he “wouldn’t feel good.” He had cardiology appointments but was often cagey about his condition. He took a number of prescription medications. Okay, so my dad was only sort of fine.

I was in high school when doctors gave him an implantable cardiac defibrillator. His health problems might’ve been given more attention had it not been for my mom’s cancer diagnosis. My mom spent the next eight years slowly dying, and whatever was wrong with his heart went untreated.

Given this pattern of my dad prioritizing others over himself, I was alarmed to receive an email – an email! – from my dad on a Friday afternoon, cryptically titled “Sunday.” He explained that he was being admitted to St. Peter’s, a nearby hospital, “for some adjustments to his heart.” The email had a chaotic, confused energy. “I’ll cease for the moment and check with St Peter’s to see if they have room for me,” it concluded.

I read it to my fiancée. “What the fuck is going on up there?” 

I booked a flight to upstate New York to find out.

—

On the phone with my fiancée two days later, I explained the situation. “They’re moving him to Columbia in the city. They can’t stabilize him here.” Much later, she would tell me that my voice trembled in a way she had never heard before. She knew something was very, very wrong.

“I’ll be there tomorrow,” she replied.

After several intensive days of treatment at Columbia, the cardiologist gave us the first of what would become many lessons on organ transplantation. 

“Your father’s congestive heart failure is too advanced. We have his medication adjusted, so he is stable right now, but the only life-extending treatment is a heart transplant. The waiting list here is about two and a half years,” she explained. “But, in his current condition, he probably won’t survive more than six months.”

My fiancée took the lead on a frantic, self-guided crash course on organ transplantation. She quickly learned that the wait time for a heart in North Carolina was only eight months and that the closest hospital that performs the surgery was a serendipitous fifteen minutes from our house. 

My dad was released from the hospital a few days later. We picked him up, drove to LaGuardia, and boarded a plane to Charlotte. He was moving in with us. 

—

The cardiology team in Charlotte made fast but temporary improvements to his health. While he still desperately needed a new heart, doctors called his condition punctuated equilibrium. Practically, it meant he was sick, but not dying immediately. This temporary reprieve gave us some breathing room to navigate the organ transplantation process – a process that takes months just to get on the waiting list for an organ.

Meanwhile, we tried to create a new “normal” life for all of us. In the chaos of my father’s medical emergency, my fiancée postponed and reworked our wedding plans. Instead of a destination wedding in Saint Lucia, we would have our ceremony in the public park near our house. Conveniently, it was even closer to the hospital. We had to plan for the possibility that an organ could arrive at any moment, including during the wedding.

Still, we tried to give my father as much freedom as possible. He loved driving, so once his cardiologist in Charlotte gave the green light, we encouraged him to go out for a joy ride. “We set the GPS destination for our house, so whenever you’re tired of driving around, just follow the instructions to come home,” we told him as we finished typing in his new home address. 

“If you have trouble, just call us on your cell phone.”

An hour later, my phone rang. As I answered his call, I could hear the GPS chirping away in the background. I assumed he had a question about the neighborhood he was in or wanted a recommendation for a place to stop. 

“Hey dad, what’s up?”

“I… I don’t know where I am. I don’t know how to get home.”

“Well…,” I said as I tried to process why the GPS wasn’t helping him. “I hear the GPS telling you to turn. You can just follow what it’s telling you to get home.”

He sounded scared as he said, “I’m not sure what to do.”

“Uhhh, okay,” I stammered. Something was wrong. “Umm, where are you right now? What do you see?”

“I see a gas station,” his nervous voice continued.

“Okay, stay on the phone with me and walk into the gas station. When you’re inside, hand your phone to the guy behind the counter, okay?”

—

Even while my mom was still alive, my dad had flashes of forgetfulness. He’d lose track of why he went to the store. He’d ask a question about some personal detail that seemed evident because it was so recently discussed. That sort of thing. 

“He’s under so much stress,” I'd think in those moments, giving leeway to the fact that he had a dying wife at home.

Retrieving my dad from the gas station was just one way that we learned about his cognitive struggles in addition to his cardiac ones.  Meanwhile, his thorough neurological work-up as part of the transplant evaluation process gave it a more formal name: Dementia. 

“When is my next doctor’s appointment?” (It’s tomorrow, for the fifth time!)

“What are we having for dinner?” (Does it matter? I will have to tell you again four more times, and you won’t remember anyway.)

“I haven’t heard from Woodie in a long time.” (He died last year, why can’t you remember this?!)

“This is like living with a goldfish,” I thought to myself frequently as we adjusted to a new, and slowly declining, normal.

The discovery of my dad’s dementia disqualified him from being a heart transplant candidate under the logic that if you can’t remember how you feel day-to-day, you can’t be relied on to remember to take your medicine, and you have an irreversible condition that will eventually kill you, why waste a perfectly good heart?

From the mundane to the tragic, the demented brain experiences the everyday routines of daily life as if they’re new. My dad lived on a perpetual merry-go-round, every rotation revealing some previously experienced joy – or tragedy – as if it were novel. Only two memories had staying power, deeply seared into his neurons in a way that even dementia couldn’t erase. He remembered that my mom died. And, he remembered the promise of a heart transplant extending his life.

“I must be getting my new heart soon, right?”

“I need to stay alive long enough for that new heart.”

“When is my heart transplant?”

There were endless variations on these questions and interjections. The casual observer may think, as we did in the beginning, that we could simply “remind” him that there would never be a new heart. But his reaction was the same the second, third, and hundredth times we had this conversation. There was no reminding him of the previous conversations. I eventually found the entire notion unsatisfying – he would relive the same trauma over and I would be more sad and frustrated.

Routine neurology appointments gave clarity to the otherwise shadowy nature of this kind of memory loss. 

“I’m going to say three words, and I’d like you to repeat them back and then try to remember them for a little bit,” my dad’s neurologist would begin.

“Sure,” my dad would say, enthusiastic about this exercise. He didn’t remember how he did on this test three months before. Forgetfulness, in some ways, made him undaunted. 

“Table. Apple. Penny.” The three words differed on every test, though it didn’t matter.

“Table, apple, penny,” my dad would dutifully echo back.

“Okay, great. Now, when is your birthday?” The neurologist had a knack for sincerely asking these simple questions, his intonation and facial expressions never betraying the calculating, diagnostic purpose behind the exchange.

Dementia hadn’t yet devoured memories from the 1940s. My dad knew his birthday.

“Good. Now, do you remember what those three words were?”

“Well, you see,” my dad would begin a long, rambling, and eventually incoherent diversion to the question. “I know you gave me some words,” this lecture would begin. He was a master at this kind of improv, filling the gaps in his memory with facts, figures, and stories. He routinely fooled strangers in casual conversations, relaying convincing stories, the products of fabricated memories generated on demand from a jumbled confusion in his mind. 

These experiences revealed that reality is not just the experience of your senses in a single moment. The mind creates order from your current circumstances by having coherent, consistent memories about what led to that moment. Some of our memories are from moments ago, like remembering three words or that you walked into the kitchen because you’re thirsty. But other memories are more complex, like defining who you’ve been, what you’ve done, and how you felt about it. It’s the combination of many moments and the perceptions that go with them that give reality its textures and contours.

—

As dementia marches on, randomly erasing old memories and preventing new ones from forming reliably, the patient starts to inhabit a different reality than everyone around them. How do you convince someone that their memories are false? What purpose would it even serve? How do you square the moral obligation to be truthful with the ethical duty of compassion? These were the dilemmas we faced in every casual, forgetful interaction.

I came to believe there were limits to how much I would – or could – bring my dad back to reality. 

As far as I can tell, this deception was harmless. Unnatural at first, it eventually became second nature in our home. As we casually drifted in and out of my dad’s transient reality, we found ways to compassionately avoid rocking the boat. 

Some false realities, like his belief that he took his medicine that morning when he actually hadn’t, mattered a lot and required reshaping his reality to match ours. “No, I’m sure you haven't taken your meds yet. It’s okay. Here they are. Why don’t you take them right now?” 

But many times, more trivial matters didn’t warrant dragging him back to our reality. “It looks like it’s really warm out today!” he’d say with excitement. Did it matter that we had already told him it was cold five times that morning? 

Sometimes, it was best to avoid wading into the waves of reality at all. 

We eventually learned that the most compassionate answer to “When am I getting my new heart?” was, “I don’t know, hopefully we’ll hear something tomorrow.” 

—

Thanks to

Rick Lewis

, Jennifer Scott, Tahsin Khan and

Emily Ann Hill

for their feedback on this essay.