I started losing my dad in September 2011. One Friday morning that month, my parents, my two girls, and I set out for Huntsville, Alabama, for my cousin’s wedding. We stopped for lunch in Memphis. Mom and Dad had never been there. We walked up Beale Street, where the bars were already livening up for that night. Music poured out of open doors. Beer trucks lined the street, and men pushed dollies loaded with cases of beer around us as we walked at a slower pace. Dad took Mom’s hand as we made our way up the street. He loved music. It spoke to his soul in a deep and profound way.
“We’ll come back here and spend a weekend—just the two of us,” he told Mom.
We ended up at Hard Rock Café, where Dad and I posed for pictures on the stage. In one shot, he’s kneeling on the floor and holding a guitar by the neck with both hands high over his head like he’s channeling Jimi Hendrix. It’s a great picture.
That night, we rolled into Huntsville for a weekend of sweet celebration with Dad’s sister and her children. Her son Sid was getting married to a wonderful woman named Evelyn. They are both professional musicians, and they had gathered an ensemble of bass violins and flutes—their respective instruments—to perform at the ceremony. Sid had asked Dad, who had been forced to abandon a much-desired music career decades earlier, to conduct the ensemble. Dad did his job proudly.
After the wedding, we talked and ate and laughed and drank with the family and friends who were gathered there. Ann, my dad’s sister, was in the process of moving far from us to Sid and Evelyn’s home in Indiana. Dad and Ann knew this could be one of their last times together. They sat and laughed and clung to each other. The Alabama humidity settled on the festivities, and by the end of the evening, our faces shone and our hair drooped with the heavy moisture in the air. Someone looked at a clock, and we were all surprised that it was 1:30 a.m. It had been a beautiful night.
Less than a week later, Dad was in the hospital with double pneumonia. This diagnosis led to the discovery of interstitial pulmonary fibrosis, an inflammatory lung disorder in which fibrous tissue forms between the alveoli in the lungs. This condition is irreversible. Dad never smoked, but he did grow up on the Texas Gulf Coast, where huge refineries belch filth into the atmosphere in the name of profit. We’ll never know exactly what caused Dad’s illness. And more bad news was to come.
Dad was also diagnosed with Parkinson’s, which had been brewing under the surface until the pneumonia seemed to throw it into full force. Worst of all, accompanying the Parkinson’s was dementia with Lewy bodies. This type of dementia, caused by abnormal protein deposits that form inside the brain’s nerve cells, is characterized by confusion, hallucinations, lack of facial expression—things that had become obvious in Dad’s behavior. When he was diagnosed with Lewy body dementia in early 2012, there were no medications approved by the FDA to treat it.
I never accepted that Dad’s changing personality was permanent. I thought it would somehow go away or he would learn to manage it, and then my old Dad would be back.
On Feb. 25, my seven-year-old daughter Jenna and I were gradually getting ready to go to my parents’ house. It was a Saturday morning, and we were planning to spend the day with Dad while Mom ran some errands. I had been on the phone with Mom, who said Dad had slept uncharacteristically late, and she was going to wake him up to give him his meds. Jenna and I were in no rush. I hung up the phone and plopped down on the couch for a few games of Words With Friends on my Kindle. Ten minutes later, the phone rang, and it was Mom again. Maybe she was calling to tell me to come later since he had slept so late. But I had a faint suspicion that something was wrong.
I picked up the phone, and she was sobbing. She couldn’t talk. I yelled into the phone above her sobs, “Mom! What is it?”
I could make out something about 911.
“Did you call 911, or are you telling me to call 911?” I asked her.
She had already called 911. So maybe he had fallen. Maybe his oxygen level was dangerously low.
Maybe he didn’t wake up.
I tried not to act too alarmed as I rushed Jenna into her clothes and to a neighbor’s house. The neighbor offered to go with me, but I wanted to go alone. Once I was back in the car, I realized I should have had him drive me. The people of Saline County, Arkansas, were out for their morning drives, creeping down the roads in their pickup trucks at maddeningly slow speeds. Or maybe it was just my panicked state that made everyone else seem to slow down. Tailgating them didn’t work. Neither did yelling obscenities and banging on the steering wheel. Where were the hazard lights on this car? I had never had to use them before.
I finally got to my parents’ street and saw an ambulance in front. A couple of EMTs were milling around the vehicle. They were in no hurry. I parked half a block away and ran the rest of the way. The front door was open, and there was Mom. Weeping, she reached for me.
After running down the hall to Dad’s room, I was confused to find his bed empty. Then I nearly tripped over the bulging sheet on the floor. The EMTs had moved him there to try to revive him. I collapsed on the floor next to him.
When I was four years old, my family was getting ready to leave for our summer vacation. Summer vacation consisted of driving 14 hours from southeast New Mexico to Houston and Beaumont, Texas. We would spend one week with each set of grandparents. The week in Houston meant driving the sprawling freeways, shopping at gargantuan malls, and going to the beach. In Beaumont, I would play in my grandmother’s garden and swim in the neighborhood pool. The car was loaded, and I had run back in for one more bathroom trip before we left. As I came out of the bathroom, I fell in behind Dad, who had made one last walk through the house to check everything. I followed him to the front door and he opened it, pushed the button on the doorknob to lock it, walked outside and shut the door firmly behind him.
As the sound of the closing door shuddered through the house, I realized he had not known I was behind him. He thought I was in the car. They were going to leave me. I was going to be in this house alone for two whole weeks. I slumped against the wall, absorbing this reality and giving in to the convulsing sobs that seemed to explode out of my little body.
Suddenly, Dad burst back through the door and scooped me into his arms.
“I would never leave you,” he said. “I would never leave you.”
I heard a sobbing voice saying, “Dad… Dad…” and realized it was mine. I reached a shaking hand to the part of the sheet covering his head and started to pull it back. I saw his ear and his hairline, but I did not want to see his face. I dropped the corner of the sheet and just sat there. He really was not breathing. The oxygen machine, which had filled the house with its humming for the past five months, sat eerily silent. The only sounds were EMTs talking in hushed voices and neighbors consoling my still-sobbing mother. No one was in a hurry.
In a few minutes, I would call my husband and tell him what happened. In a few hours, I would tell my children their beloved PaPa was gone. In a few days, I would slip a plastic razor cover into his casket. But for a little longer, and for the last time, I sat with my dad.