Dying Without Dignity

My Mom was a legend. She died like a pauper.

The Zoom funeral went on much longer than we anticipated. In December of 2020 funerals were heavily restricted in Minnesota, so an online funeral was the best we could do. People from all across the country shared their stories of my mom.

I chose to work from a few notes for the funeral, as opposed to reading something pre-written. I knew that if I could see the next words on a piece of paper in front of me, I would not be able to control my emotions. So I went from an organized outline in my head.

My dad was in the same house but chose to be in a different room. Alone. He read out loud a beautiful love story. It was part spiritual, part romance. His voice was shaking and much higher than normal. Sure, old men are more emotional than their younger selves, but he was grief-stricken. His heart was torn out. It was as if he had gone backwards from the Promised Land to the Desert.

In the end, the Zoom service was sweet. Much sweeter than the death that preceded it.

Delay

In March of 2020, my mom and dad, both in their late 70’s, were caught up in the dystopia that was Covid. They were the last people to leave a hotel in San Francisco and nearly alone on a flight back home to Atlanta.

My mom was sick. Not with Covid, but with two lethal diagnoses that were compounding: Interstitial Lung Disease and Pulmonary Hypertension. Her lungs were turning into a hard sponge while her heart was getting big and weak trying to work against increasing pressure.

She was looking down the barrel of a gun—a gun that looked like suffocation.

She could walk about 10 feet until she started hyperventilating. It was getting bad.

Shortly after they landed in Atlanta her scheduled procedure was delayed. She was booked for an “elective” procedure to measure the pressures in her heart that would show if some treatment might give her a better quality of life.

Instead she got lockdowns.

2-5 Years

I remember when my brother found out about her diagnoses in 2018. “Dad, she has a 2-5 year life expectancy.” My brother is no doctor, but he, like me, was raised in a family of doctors. Medicine was not out of reach for us. We were both Pre-Med and extremely interested in all things biology.

It helped having a dad who was a cardiac surgeon who spoke in the language of plumbers. My dad never used big words to explain his procedures to his patients. Furthermore, he refused to step outside of his lane. If it wasn’t heart surgery, there was a good chance he would say, “I don’t know. I haven’t studied that since Med School.”

My grandfathers were all doctors. Even an uncle. Medicine was the language of our family. We were half-expected to be able to keep up. And, like all healthy families, our opinions and questions were accepted and considered.

When my mom was diagnosed with Interstitial Lung Disease, within three clicks on the internet I could speak the language and ask the questions. But I could also see the future.

My mom would die.

Staring Out The Window

In June of 2020 I flew down to Atlanta to drive my mom’s car to Minnesota. My parents had decided to move closer to family. I wrangled a friend of mine who I knew would enjoy a long car ride. At this point nothing in our lives had been normal for several months, so a road trip sounded like a good time.

When my buddy and I arrived at my parent’s house in Atlanta, they were both masked. They had been isolated for months. Covid for them started with a 6 week absolute quarantine followed by exposure to only the cleaning lady. My dad did the "senior hour” 7am grocery store visits once-a-week. They even washed their mail.

Somehow, a month into this stringent lockdown, my mom (but not my dad) got a cold that almost killed her. We all assumed it was Covid, but it wasn’t. My mom tested negative for every nasal and blood test for Covid—straight through to her death. She never tested positive for the disease.

She took a big punch with that cold. It accelerated her symptoms and she was never the same. There was irony here, obviously. My mom locked herself down to avoid dying from Covid and yet somehow got another cold that nearly killed her instead. If she could get a cold 4 weeks into strict quarantine what does that say about quarantines? About viral infections? My dad never got sick.

The night we arrived, my mom made us ribs and we ate outside. My mom took off her mask when we were outside as my dad collected food from the kitchen.

We told stories like families do.

But, as I remember it, the stories were more important. Not only did I want to hear the stories from my parents who suddenly had mortality tied to them, but we were also experiencing the Covid-era revival of family time with fewer distractions.

I loved that night. It was perfect.

The next morning my mom wanted me to bring some things back to my wife. Bowls and other kitchen items. My mom was preparing to die, and it made me sad. She directed me from a stool across the room. When I couldn’t find what she was telling me, she walked the twenty feet to the big closet. She was breathing so heavily she had to sit down. Imagine that time you ran your fastest and longest and then struggled to recover with the fastest possible heart rate and deepest possible breathing.

That was my mom after walking 20 feet.

Later we said goodbye with big hugs. I joined my friend in the car as we prepared to make the long trip to Minnesota. But I had forgotten the keys.

I ran back into their house and grabbed them from a bowl in the family room.

There was my mom. She was alone in that big room sitting in a wing chair staring out the windows with her mask on.

When I think of my mom, that’s the image that crushes me most.

It’s Not Your Lungs

Four months later, in early October, I took my mom to see a lung specialist at the University of Minnesota to figure out why she was so out of breath all the time. She had flown up to Minnesota by now and I offered to spend a full day off work with her at her various appointments.

Mom and I had a blast that day. I wheeled her around in a chair as we went from appointment to appointment.

She kept apologizing. My mom, now on oxygen full time and riding a wheelchair for the first time, hated attention and preferred being the caregiver.

The key appointment was with a young Korean doctor who spent an hour with my mom. I recorded the entire thing with my iPhone and sent it to my dad afterward.

In short, the doctor said, “It’s not your lungs anymore. It’s your heart.”

While my mom’s quality of life was deteriorating, her lungs had stabilized. In fact her lungs had gotten functionally no worse over the last 18 months.

The doctor suggested she see a cardiologist.

Talk Later?

A couple of weeks later my mom was in for a procedure to test the pressure levels in the chambers of her heart. This was the same procedure she should have had 6 months prior before the Governors shut down elective medical procedures.

The readings were dire. My mom had very low blood pressure. Her heart was big, floppy and inefficient.

My Dad, an expert in all-things heart-related, knew way too much about what he saw. This was end-stage stuff. Not good.

But my mom was alive going in and made it through the procedure alive. This was confirmed by a phone call from my dad.

A few minutes later my wife got a text.

“talk later?”

My wife looked up from her phone and said sternly to me, “You need to call your mom right now.”

Sometimes so much can be read from a brief text. My wife knew that this was not a normal text from my mom.

The exact conversation escapes me but I remember this: she kept deflecting from talking about herself and kept asking me about my job.

What we didn’t know at the time is that the doctors had given her 25mgs of Metoprolol, a beta blocker. The procedure to measure heart pressure had triggered afib (heart flutter) and the first, easiest remedy is a small dose of a safe drug. My mom had used this drug in the past at much higher doses but didn’t tolerate it well. These doctors were not aware.

Metroprolol has two actions: it reduces the heart rate and reduces blood pressure. She needed the heart rate reduction but her body could not handle a lower blood pressure.

Her body went into shock to keep her core systems alive. When she texted, her body was probably no longer providing proper blood supply to her kidneys and bowels. And by the time I got to talk to her she was starting to spiral with nausea and weakness.

She only managed a few sentences before she said, “I gotta go.”

She hung up. Coded. CPR.

Dystopia

My mom languished in the ICU for 9 weeks.

Lockdown protocols meant only one authorized visitor was allowed. That was my dad. But by December, even my dad wasn’t allowed.

Despite 16 family members within a 2 mile radius of the hospital, my mom spent the remaining days of her life alone in a room with nurses in Covid space suits.

She was given a tracheostomy to help her breath and a feeding tube. She actually woke up for about a week midway through the ordeal.

The nurses would schedule FaceTime sessions with her family. These would last about 10 minutes. My mom couldn’t talk because of the tracheostomy but she was her animated self—nodding and giving us a huge smile.

But the nurses would leave the room and the iPad would fall over. Or they would cut us off before everyone had a chance to say hi. At this point, she was trending well, so we didn’t feel the need to say goodbye or savor every moment.

Before my brother and his family could schedule a FaceTime with Mom, she spiraled again.

Noah’s Ark

On Dec 23rd, 2020, my dad called and said it was time to say goodbye.

HOWEVER

We were not allowed to all go visit my mom together. Covid rules stated that only two were allowed at a time and then only briefly.

So, instead of gathering around my mom, supporting each other, praying, singing hymns and telling stories together as a family, we complied with rules made by evil men and went up in pairs.

For the first time in 9 weeks my mom felt the gentle, loving touch of her family. My wife and I stroked her hair, held her hand and gave her several hugs. I whispered things in her ear. Told her I loved her. Then we prayed for her and kissed her goodbye.

We were ushered out of the room because the next pair was on the clock.

We were there about 15 minutes.

She died about 2 hours later. Alone.

Epilogue

Within days of the Zoomeral, people were texting me and calling me with stories and memories of my mom. But they also shared their disappointment that they weren’t invited to her funeral. The Zoom was capped at a fixed number of people for technical reasons.

Sorry. You can’t come to the funeral. That’s what it felt like. A major life milestone, attending the funeral of those you loved, was restricted by executive order.

“She was a legend,” someone said to me in one of those phone calls.

Yes. She was. Though it didn’t seem like it at the end.

My mom died without dignity. That’s what really bothers me. She lived a great life. She did not deserve to lie in the ICU for 9 weeks alone. She didn’t deserve to be treated like that—valueless. We would have been there holding her hand and telling her how much she meant to us. She deserved that.

At least.