Mom’s Final Hours

Yesterday Mom passed away. It was painful. But oddly it was beautiful, too.

I realized Mom was going to die after spending three weeks in the hospital with no improvement in the last 14 days. It was time to prepare for her death.

The problem was we weren’t ready. The doctors were still going full-court press. Every day we had been praying as a family for a miracle and expecting one. We took any minimal improvement Mom made as a sign of eventual full recovery. In short, we were in denial.

The doctors gently tried to break the bad news. “We don’t think she’s going to pull through this… she may spend many weeks on the vent and may not even come off it… we don’t have any more options for her cancer.” It was difficult to accept. So in the age of Fake News, we denied reality and clung to whatever facts made us feel better.

I had to prepare the family. During a worship thought, we discussed how Mary had prepared for the death of Jesus. According to the Bible, it is okay for us to prepare for the death of a loved one. My words were met with silence.

On the day we made Mom comfort care a disagreement developed among the family. The immediate family by the bedside could clearly see Mom had to be comfort care. However, Mom’s extended family who could not be by bedside disagreed. We were getting into a scenario where one part of the family would blame the other for not giving Mom enough opportunity to fight the illness.

The Family Meeting

The entire family met on FaceTime and I methodically went through the reasons why we were making Mom comfort care. Mom had been slowly declining for the last 6 months. Most of her days were spent in bed. Bathing was so exhausting she needed to nap for a couple hours afterward. She had run out of treatment options for cancer according to her oncologist. Furthermore, Mom had been on the ventilator for three weeks meaning lung scar tissue was settling in making it nearly impossible to come off the breathing machine. On FaceTime, I showed them the tube in her nose and mouth. They saw the swelling in her arms and legs.

I was met with pushback. They still wanted to give Mom a chance. They wanted to keep praying for a miracle. I couldn’t change their mind and found ourselves at an impasse. Finding myself in difficulty, I looked over to Mom who was listening in on the conversation. Most of the time Mom was asleep but during this important moment her eyes were wide open. I pointed the camera phone at her now. We had considered everyone’s opinion except hers. “Mom, are you ready to die?” Mom’s only way of communicating was nodding or shaking her head. Even then, she didn’t reliably answer every question. To everyone’s surprise, Mom nodded her head up and down. I heard audible gasps from the family. I pressed the issue further. “Mom, are you ready to die today?” Again, Mom left no uncertainty. She nodded her head giving us a definitive answer. I could hear audible cries. “You saw her answer,” I said to the family. “We have to honor her wishes. This is not about you now.” I was so proud of Mom when she gave her answer in no uncertain terms. It was no easy task to get there. But Mom had already been working through her issues.

Mother’s Struggles

The hospital had a strict no visitor policy. Yet, somehow they allowed me to come stay at Mom’s bedside for almost 80 hours. Because of COVID-19, I was not allowed to leave and re-enter the hospital. This was a rare exception and we were told no one else could visit Mom. But our family doesn’t take no for an answer. After talking with multiple personnel, much prayer and pulling strings, the hospital allowed Dad to be by the bedside as long as I left. Dad and I would switch places on Mother’s Day. I was warned not to try to bring anyone else to the bedside.

Mom was awake with a furrowed brow for 45 minutes the night before I left. I asked her, “Mom, are you in pain?” She shook her head. “Are you comfortable?” She nodded. “Are you thinking?” Again she nodded. To reiterate, Mom could not speak because of the breathing tube in her mouth. We were left with yes and no questions.

It was after ten o’clock at night when I called Deborah. My sister had the privilege of caring for Mom for five weeks prior to hospitalization. I told her Mom was worrying and thinking about something but I didn’t know what. Deborah told me how Mom worried about Dad, Uncle Joel and others. She told me how she worried about her own body and wondered why her body was failing her. I hung up the phone and returned to Mom’s bedside.

“Are you thinking about Dad?” I asked. She nodded her head up and down. I knew Mom felt bad for leaving Dad alone should she die. I reassured Mom I would take care of Dad. Through tears, I pleaded that she surrender the responsibility of Dad to God and give him over to me. I asked her if she could give Dad over to me. She nodded her head. “Besides, Dad’s good looking. He’s going to get remarried anyway.” It was an oddly timed joke but it worked. I’ve never seen anyone laugh on a ventilator. But I saw it now. Mom’s mouth slightly widened. Her eyes softened as she gently bobbed her head. “But Mom, she won’t be as pretty as you. She won’t be as charming as you. She won’t be as good a cook as you.” We were both tearing up now.

And that’s how the night went. Mom would wake up with a concerned look. She wasn’t in pain. Mom just needed relief from the worries. I did my best to let her know that we would be okay. I let her know God had not abandoned her before. He wouldn’t do so now. 

Mother’s Day arrived and the hour came where I would switch with Dad. I was told that after leaving I would never be allowed to return. I realized I had to prepare Mom for the inevitable. No one else would.

“Mom, I have to tell you something. You’ve lived a meaningful life. You’ve raised three children who are professionals. You have five grandchildren. You’ve been with your dedicated husband for 38 years. You’ve impacted the lives of thousands. You have nothing to prove. There’s nothing left for you to accomplish.”

I began to weep now as I spoke. “Mom, I want you to know something.” I hesitated briefly before plunging in. “It’s okay for you to die. You can go now. I don’t want you to suffer anymore. We have been praying for a miracle. We thought we never got one. But we did. We got the miracle. The miracle was you.”

Mom’s eyes teared up. Then her eyes closed and she drifted to sleep. Up to that time her heart rate was elevated and her blood pressure high. Twenty minutes later her monitor showed her heart rate and respiratory rate slowing. I wondered if she had accepted the message.

Final Day

The final day of Mom’s life was a long one. It was 12:30 am when I finally started going to bed. I feared my own thoughts should my head hit the pillow. Instead I watched Netflix. I would keep my mind distracted long enough for fatigue to whisk me away to the land of sleep. An hour later I was exhausted. Surely sleep would visit me now. But within seconds of my head sinking into the pillow I had the most uncomfortable thought. Mom is not going to be okay.

I FaceTimed Dad who was at Mom’s bedside. His eyes were red. The monitor was showing Mom’s heart rate in the 140s. It hadn’t gone down for a couple hours. I began to hyperventilate. Perhaps this was the moment. That same day, the doctor had miraculously promised us: “If your Mom begins to deteriorate, the rest of your immediate family can come to the bedside.” The nurse practitioner examined Mom to determine if the clinical deterioration was significant enough to warrant a visit from the rest of the family. He obtained labs to determine if Mom’s death was imminent. I paced around the room and distracted myself with another Netflix show. An hour later the labs were normal. My head sank into the pillow at 2:30 am. Just a false alarm I thought.

I woke up to the ring of my cell phone at 3:45 am. It was Dad. “Mom’s had 15 seconds of v-tach. The hospital says you can come now. Bring Deborah and David. You all have been cleared for visitation.” Ventricular tachycardia was a sign that her heart was giving out. V-tach has the potential to kill within seconds. It would be any moment now. The three of us were out the door by 4:00 am. Our driver, Uncle Cesar, drove 15 miles over the speed limit with the hazard lights on. I wondered whether or not we would make it in time.

We were screened for COVID-19 and given white wrist bands at the hospital entrance. I brought my violin and David lugged his guitar. We navigated the hospital maze and entered the ICU. After donning gown and gloves, we entered room 24 around 4:30 am. Mom was still alive. Deborah announced her arrival and held Mom’s hand. Mom turned her head to acknowledge her presence. Her eyes barely opened. David announced his arrival soon after coming to the other side of the bed. Mom turned her head and this time her eyes opened wide.

Our relief to have made it to the bedside was cut short by the reality ahead of us. The doctor came into the room and empathized with us. Then she got into the difficult issues. They expected us to make Mom comfort care. We acquiesced as long as they would oblige us two favors. One, they would look into having Mom’s local Pastor come into the room for an anointing service. Two, they would allow for Mom’s three siblings to visit her.

Both favors were tall orders. First, the hospital didn’t even allow its own clergy to go into rooms like Mom’s because it was contact isolation. If the hospital didn’t allow its own clergy to enter Mom’s room, what were the chances they would allow outside clergy to do the same? Second, the hospital already had a no visitor policy. They denied our second request but to my surprise gave us the green light on the first request. Pastor Baysa would come in the afternoon just prior to putting Mom on comfort care.

I didn’t want the day to end. But I also wanted it to end. I played Meditation by Thais on my violin and wept as I played the last note. David took out his guitar and sang an original composition dedicated to Mom. Dad sang their song Moon River. We all joined in for the hymns. We read Scripture. We prayed. Dad called some of Mom’s closest friends to say their good-byes. I resigned myself to the fact that we would fail to call all of Mom’s good friends in the precious time we had left.

Pastor Baysa entered in gown and gloves after three o’clock in the afternoon. Though we were there for 11 hours, the time had flown by. We were happy to see him but dreaded what we had to do afterward. Pastor reassured her that her salvation was secure as long as she trusted in Jesus. He anointed her head with oil. He prayed for peace as Mom entered into her final rest. Mom’s furrowed brow seemed to ease.

Final Hours

The idea behind comfort care is to allow for natural death. The alternative of Mom recovering alone in a long-term care facility as they weaned her off a vent for many weeks was simply unacceptable. Mom would be given medicines to make her comfortable. It would take away the air hunger. Then the respiratory therapist would slowly go down on the oxygen support. She would begin at Mom’s level of FiO2 of 70% and slowly go down to 21% or room air. Medicines would be titrated to ensure she stayed comfortable. The process would take several hours though no one knew for sure.

We began comfort care around 6:20 pm after spending 14 sweet hours with Mom. She was first switched from the uncomfortable APRV setting to the more natural volume control. Immediately her pulse went from 93% to 86%. She was started on a morphine drip of a low dose of 2 mg per hour with the intention to titrate up. At around 6:45 pm she got a 2 mg bolus of morphine to help with her air hunger. However, after 15 minutes, she still looked uncomfortable. I insisted with Dad that we should give her another dose of morphine. He disagreed. I appealed to Mom in her breathless state, “Do you want morphine, Mom?” She shook her head definitively. In fact, we never went up on the morphine drip nor would she get any other doses. Mom chose to suffer the air hunger and feel the presence of her family over the comfort of sedating medicines.

After about 30 min to 45 min the FiO2 went down from 70% to 60%. Her oxygen level steadily dropped from the 80s to the 70s. Her heart rate remained in the 150s. We sang It Is Well With My Soul. Around 8:30 pm, she went into v-tach lasting for several seconds. Her blood pressure dropped to an unsustainable 60/20. Her heart maintained itself in the 90s. David played the Blessing on his guitar. I sang at the top of my lungs. Mom’s heart would hang on for another hour. With minutes left we all prayed for Mom including Auntie Connie over FaceTime. At 9:30 pm her heart stopped. Deborah cradled Mom’s face in her hands and wept bitterly.

The Most Beautiful Thing

Surprisingly, I found myself shedding few tears when Mom finally passed. I had witnessed one of the most beautiful days of my life. It was up there with seeing the birth of my children and marrying my wife. In the age of COVID-19 and a no-visitor hospital policy, Mom got to be surrounded by her family. Multiple family and friends got to say goodbye with the help of technology. Mom had an anointing service from her pastor. Mom heard songs of praise as she slipped away. She stared death in the face and requested we not increase morphine so she could feel our presence. Her heart beat long and hard in the face of low blood pressure and oxygen levels. It was fitting to know this woman of grit and extravagant generosity had a strong heart.

The most beautiful thing about the day was the knowledge of what happened. I described it in what I said to Mom before she went on comfort care.

“Mom, this is the hardest thing you have to do. But it’s also the last thing you ever have to do. You will close your eyes and rest. Then in the next moment, you will see your Redeemer face to face. And then in the next moment, you will realize you have received a body that is cancer-free. And then in the next moment, you will be reunited with your loved ones. I’m proud of you, Mom.”

Today, I have a gaping hole in my heart. But I’m not sad. In fact, I’m happy for Mom. Her suffering has ended. And her next moments will be beautiful.

Photo Credit: Deborah DeSouza