I lived with my dad during the last six months of his life in our home state of New Jersey. He had been suffering from Stage 4 kidney failure, which was made progressively worse by complications from open-heart surgery two years earlier. During that time he did a lot of talking, and I did an equal amount of listening. When you know you’re dying, and there is very little time left, the honesty in those conversations is as sharp, uncompromising and liberating as any you will ever experience in your life.
My dad had always been a God-like figure to me, never failing to pass on his honest wisdom, beliefs, Christian faith and final wishes to a son who never quite lived up to the expectations of either of us. He never blamed the people he loved for their own failings in life. He always blamed himself.
“I should have done things differently; and if I did, things may have turned out much better for you Frankie,” insisted my dad.
That’s not true, but it was a way for my dad to absolve me of any personal responsibility or guilt for not being the man we both thought that I would one day become. That was my dad, offering himself up to protect those he loved the most.
•••
The last time I would take him to the hospital we were met by an emergency room doctor who quickly examined him. After some blood tests, the doctors confirmed he had had a heart attack, and he was admitted for more tests.
My dad had always been a God-like figure to me.
I stayed by my dad’s side all night, but we didn’t speak much. He was exhausted, and I was so sad I could hardly say a word to anyone. Just before falling asleep, my dad whispered to me, “Did you say August 16th is Isabella’s birthday, Frankie?” Isabella is my eldest daughter, who was living with my younger daughter Sofia and my ex-wife Jackie in northern Virginia. I was puzzled by his sudden interest in my daughter’s birthday, still several days away, but confirmed the date.
The next morning when the doctor arrived, he asked me to step outside. “Your dad is dying, Mr. DiFulvio,” he said, putting a hand on my shoulder. My dad’s kidneys were failing, which was causing fluid to build up in his body. All they could do now was make him as comfortable as possible.
•••
I spoke with the nurse about transitioning Dad into hospice care the following day. It was then that she told me that he had rejected hospice care at this time. I didn’t know what to say. I immediately asked the nurse if I could talk to the doctor and, I hoped, get an explanation. I know that my dad privately discussed something with the doctor the day before when I was running some errands, but I assumed it was about his upcoming hospice care.
“I decided to give dialysis a try, which might give me an extra few weeks of life, Frankie,” my dad told me. “It probably won’t work in my current condition, but I want to give it a try. I have nothing to lose,” he insisted.
I was stunned, as the doctor had told me that this was not an option for my dad at his age and in his condition. My dad had just turned 86 years old the previous month.
When the doctor arrived that evening, I forcefully asked for an explanation. I didn’t want him to suffer or be kept alive by artificial means. My dad had often told me that was his wish, too.
The doctor told me my father had insisted on dialysis despite the risks after learning that he might live for another two or three weeks if he survived the treatment. “I did everything I could to change his mind; but he is an adult, his mind is lucid, and he has the right to decide what type of medical care he receives in his last days of life,” the doctor said. “I’m sorry, Mr. DiFulvio, but unless you can change your dad’s mind, we will begin dialysis for him tomorrow morning.” It would be Aug. 13.
Later that night, in a quiet voice, my dad spoke to me again. “Frankie, if I die tomorrow morning during dialysis or never regain consciousness, place the Bible over there on the table in my two hands and play the Gospel hymn, ‘Precious Lord, Take My Hand.’ The Bible is the one I shared with your mother for a lifetime,” my dad said.
“I promise I will do that for you, Dad,” I said, tears rolling down my cheeks.
•••
Aug. 13 would be one of the longest days of my life. Five hours after my dad was wheeled into the dialysis room on his bed, the doors to the room slowly opened, and he was wheeled out, still conscious. I could tell that he was happy to see me waiting for him. When he returned to his room, I held his hand and leaned over, as I could tell he wanted to say something to me but didn’t have much strength left in his voice.
“My next dialysis treatment will be in two days. What date will that be Frankie?” he asked in a soft voice.
It was now time for me to be a good son, the man I always wanted to be.
I didn’t understand why he cared about such things, but I answered his question anyway. This was not the time to judge or question him.
“It will be the 15th of August, Dad,” I responded.
Dad didn’t wake up again until almost midnight. The nurse told me that this was common for people when they first go on dialysis. When my dad woke up, I was there to greet him with some applesauce and a cup of water. But when I tried to feed him the applesauce, he could hardly swallow even a small spoonful. Taking a drink of water was equally difficult. Life was quickly coming to an end for him, so I couldn’t see the point of putting him through another dialysis session in two days. I pleaded with him to go to hospice care now.
“I will get one more dialysis treatment on the 15th of August; and if things don’t improve, I will go into hospice care, Frankie,” he promised quietly.
That night, I was able to feed him a few tablespoons of applesauce, but the last spoonful caused him to gag. I knew that this would probably be the final day that he would be able to eat food or drink water. It broke my heart, but I would keep that to myself while he was still with me.
“I need to sleep well tonight so I’m strong for my dialysis treatment tomorrow morning. Pray for me, Frankie,” said Dad.
“I pray for you all the time, Dad,” I told him.
He just smiled. He always had a beautiful smile.
•••
The next morning, I once again held my dad’s hand as we made the trip to the dialysis waiting area. We exchanged a big hug and kiss, and he was immediately wheeled into the dialysis room for what I prayed would be his last treatment before entering hospice care. The long wait had begun for me once again. It wore me out not knowing what the outcome would be for my dad, so I prayed and never stopped praying until he emerged from the dialysis room about five hours later. He was still conscious and alert. He had beaten the odds once again, making it through dialysis for a second time.
The energy my dad displayed before this dialysis treatment left him by the time we returned to his hospital room. He could barely open his eyes, and even whispering to me was not going to happen anytime soon. I held his hand, gave him a kiss and told him to close his eyes and get some rest. I then put the palm of my hand on his heart, just to make sure that it was still beating. It was, so I combed his hair back, dabbed his lips with some cold water and cleaned his face with a warm washcloth. I then sat down on the edge of his bed and laid my head on my dad’s shoulder as we fell asleep together. I woke up around dinner time, but my dad continued to sleep until late in the evening. I kept checking his heart and looking at the heart monitor on the side of his bed just to make sure that he was still with me. He was.
At around midnight, the doctor came into my dad’s room and asked to see me. He said my dad had received his last dialysis treatment, and he would need to transition to hospice. “I still don’t understand why he decided to take this path. I just hope that we can make him as comfortable as possible. He is a good man,” the doctor concluded, with tears in his eyes.
I once again broke down and cried, gave the doctor a hug and thanked him for being so understanding and compassionate with my father. I went back to my dad and held his hand for the entire evening and prayed that he would wake up one more time before he entered hospice care.
When he woke up on the morning of Aug. 16, the nurses entered my dad’s room and with my help moved him into the hospice care unit one floor up from intensive care. My dad had his own place, which looked more like an upscale efficiency apartment than a cold hospital room. The bed was also much larger, which allowed me to sit on the edge and get closer to him in his final days of life. He was still conscious and could whisper to me when he wanted to talk. I could tell that he was now rationing his voice, not knowing how long he would have enough breath or strength to speak to me.
The nurses used a complex intravenous therapy designed to deliver a little nutrition and lots of morphine to ease my dad’s pain as his organs began to shut down. I stayed with my dad through the night, never once leaving his bedside. From the morning of Aug. 17, I stayed with my dad night and day, only leaving to get some fast food and coffee from the hospital cafeteria.
•••
For the next three days my routine, and my dad’s health, remained the same. Then everything changed on the evening of Aug. 20. I was combing his hair and washing his face with a washcloth when he suddenly began to shake violently, and his eyes opened so wide it looked as if he had seen the devil himself. It was terrifying, so I called to a nurse I saw in the hallway to help. She immediately ran to his bedside. The first thing she did was put her hand over his eyes to slowly close them and held his body in place until he stopped shaking.
The son who never quite lived up to his expectations in life would not let him down in death.
I didn’t know what to think. Was this death? Had my dad just died before my eyes? No, this was an end-of-life stroke, which was probably very painful for him to silently endure. I cursed God out loud for allowing this to happen and yes, I was very upset that my dad had chosen dialysis instead of hospice care when he entered the hospital. Why, Dad? Just to live a few more days? I was furious. I felt like I had let him down. This was the tragic and inevitable result the doctor had warned my dad about before he chose dialysis. Now the nightmare I had feared had come true. The doctor said he might live only a few hours.
It was still difficult to both hear and comprehend that my dad would pass from this world to the next in a matter of hours. It was now time for me to be a good son, the man I always wanted to be. I got the Bible my dad shared with my mom for their entire marriage, placed it in his two hands and quietly played the hymn, “Precious Lord, Take My Hand,” on my phone. It would be our background music, played softly, for the remainder of my dad’s life.
I then decided to put on a pair of my dad’s pajamas that were in a bag in his room and get into bed with my dad. I would hold him in my arms until God called him home. I would not let my dad leave this world alone. The son who never quite lived up to his expectations in life would not let him down in death.
For the next few hours, I reminisced with my dad about our life together. This time, all he could do was listen. I ended each conversation with, “I love you, Dad.” By 7 a.m. his breathing had become more labored, and the time between deep breaths grew noticeably longer. Then suddenly, at 8:12 a.m. on Aug. 21, 2017, my dad stopped breathing and the heart monitor went silent.
The nurse came into the room, disconnected the heart monitor and whispered to me through her own tears that the doctor would come in to confirm my dad’s death in about half an hour. She told me that I could stay with him during that time. After the nurse left the room, I burst into tears and hugged my dad, never letting him go until the doctor arrived.
After the doctor examined my dad’s body for the last time, the nurse arrived and opened the blinds to allow bright sunshine into the room. She then asked to see me outside. I said the Lord’s Prayer over my dad’s body and followed her. She seemed anxious.
“I have to tell you something, Mr. DiFulvio,” she blurted out. “Your dad told me that there was only one reason he decided to try dialysis rather than go immediately into hospice care. He told me never to tell you, but I just have to do it. You need to know,” she insisted.
He always had a beautiful smile.
She said that my dad had declared that he would not die on his granddaughter’s birthday, which had been a possibility if he entered hospice care. “He told us that he wanted you and your younger daughter Sofia to celebrate Isabella’s birthday with her without having to think about his death,” she emotionally confided.
I fell to my knees and burst into tears once again. I now understood his recent interest in the calendar days. I struggled to my feet, thanked the nurse for telling me, gave her a big hug and returned to my dad’s room. I promised him I would tell my daughters this story when the time was right.
I then walked toward the hospice care exit. As I got halfway down the hall, the nurse shouted for me to return.
“Mr. DiFulvio, please come and see this before you go!” she insisted. I returned with her to my dad’s room, the sunshine now covering his body in bright and beautiful light.
“In my 20 years as a nurse, I have never seen this before,” she told me in tears as she pointed to my dad’s face.
My dad was smiling once again. He always had a beautiful smile.
