Question: What do all of these things have in common?
- A bottle of Purell by the front door
- Protein bars in the pantry
- A partially filled pill box on the kitchen table
- Reading glasses on the side table
- An unopened letter on the desk
- Protein shakes on the second shelf of the refrigerator
Answer: They will inspire unimaginable waves of grief when you realize that your father will never use any of them again.
Dad went into the ICU on Thursday. And even though he had been in and out of hospitals since December 26, it was different this time. He was in pain, unbearable pain, from peritonitis. When the Emergency Department doctors diagnosed him, I asked if it was curable. They assured me it was.
Except that it wasn’t. And three days later, Dad drew his last breaths surrounded by his wife, his children, and his pastors.
Dad was the epitome of love and compassion. He thought of others and how we could work together to make this a better world. When I was in high school, and questioning organized religion because of (insert myriad of reasons), instead of forcing me to attend services, he asked me what I would like to do to help others. So from then on, we worked the Samaritan Soup Kitchen downtown on Sunday mornings. I didn’t think much of it then, but later I realized what a sacrifice he was making to take me downtown every Sunday morning. He actually liked church. He liked the social aspect of it; he liked the faith aspect of it.
I was supposed to travel to Charleston on Thursday morning for a friend’s 50th birthday celebration. As I was getting ready to go, I went into his bedroom to say goodbye and noticed he was in incredible pain. We ended up calling an ambulance because I couldn’t transport him in my car without hurting him. He apologized, saying that he always ruined my trips. I laughed and told him not to worry about it – there were more important things. On Friday, from the ICU, he told me to go to Charleston, to be with my friends, it was important to celebrate relationships.
One thing he was clear about was that he did not want to be sustained by life support, and he had documented that thoroughly. We had discussed it on Saturday morning before I left for Charleston. His doctors had come into the room and said that if the infection didn’t clear up soon, they would need to remove the Tenckhoff catheter that he used to perform peritoneal dialysis. I looked at them and asked how he would be able to perform dialysis. They said he could revert back to hemodialysis. I shared that that wasn’t an option for him, since his blood pressure was so low. They said that CCRT, the continuous dialysis (which was apparently very painful and could only be done in the ICU) was the other option. From his bed, Dad shook his head and looked up at me with pleading eyes. I told him I knew that wasn’t what he wanted, and we wouldn’t let that happen. The doctors left. I reminded Dad that he was of sound mind and he could make the decision at any point to leave the hospital and we would engage with Hospice at home. He joked that he had never been of sound mind. He also said that if they told him he would have to be in this existence for a month, that wasn’t the life he wanted. I asked him if he would agree to the treatment for a few more days, maybe a week, to see if things got better, and then we could re-evaluate. He said that sounded like a good plan. He told me to be safe, enjoy my friends, and we’d see each other the next day.
So on Saturday mid-morning I went. Early Sunday morning I learned his condition had worsened, so I drove immediately to the hospital, praying the entire four hours I was driving that I wouldn’t get a speeding ticket and that he would survive until I got to the hospital. When I entered the ICU room, my Mom, my brother, and my sister were already there. I was overcome by guilt and sadness. He was fully on life support, exactly what he didn’t want. His eyes were half open and he was gasping for breath. I was gutted.
I leaned over, kissed his forehead, and told him I was there. He opened his beautiful blue eyes and said, “No way!” I repeated that I was there, Mom was there, Greg was there, and Ashley was there. The whole family was there and he was surrounded by love. Again, he said, “No way!” closed his eyes, and leaned back. We talked to him and told him how much we loved him, how much we appreciated all that he had done for each of us and for our community, how much we’ll miss him, how we cannot imagine living without him in our lives. I choose to believe he heard us. Occasionally he would squeeze my hand, or an eyebrow would raise, or a slight smile would pass his face. My brother left to get some sleep before his night shift.
And then the nurses asked to speak to us. I went out of the room. Before they said anything I blurted out, “He’s dying and he’s on life support and he didn’t want that and he’s in so much pain and we have to abide by his wishes and I don’t want him to die and he’s going to and is there anything you can do to cause him to be in less pain?” And then I collapsed.
They tried to tell me I was making a decision out of love. I was honoring his wishes and he was suffering and if we moved to “comfort care” they would have a lot more latitude with what they could administer.
I called his pastor. They ordered drip painkillers from the pharmacy.
We waited for his pastor to arrive. We waited for my brother to return. I checked his phone to see if anyone had sent messages that I could share with him. There were a couple, as well as about 300 spam and marketing messages over the course of one day. I chided him for subscribing to so much junk, then proceeded to read the offers to him, one by one. We laughed, and I hope he was laughing, too.
The pastor arrived. My brother arrived. The painkillers in a drip bag arrived. We said a prayer, holding hands. I explained to him step by step what would happen. I reminded him the first thing he told anyone when he checked into a hospital was that he has a full DNR (do not resuscitate) order. And that he didn’t want to live a life sustained by life support.
The nurses started the painkillers. “Dad, they’ve hooked you up to a stronger painkiller. You won’t feel the debilitating pain that you’ve experienced over the last few days anymore.” They stopped the blood pressure medicine drip. “Dad, they’re stopping your blood pressure medicine drip. Your blood pressure might drop.” They stopped the CCRT process which was cleansing his blood. “Dad, they’re disconnecting you from CCRT. I know how painful this was over the past few days, and you won’t have that pain anymore. This is what you asked for, and we love you so much.” It was 3:33 pm.
I had an idea that when someone is taken off life support, they die. But they don’t. The body keeps fighting, keeps breathing. The heart keeps pumping. We continued to hold his hands and tell him how much we loved him for the next 1 hour and 13 minutes. I was watching an artery? a vein? in his neck, mirroring his heart beat. I watched it slow. And slow. And stop. And I heard a guttural cry. I wondered where it was coming from when I realized it was coming from me. There is nothing that could have prepared me for him drawing his last breath. The tears would not stop flowing as I sobbed, heaving to breathe.
The nurses told us we could stay as long as we wanted. I don’t know if we stayed a couple of minutes or much longer. I do know that when I leaned over for to give Dad one last kiss goodbye, his body had gone cold.