These are the diary entries I wrote during my husband’s illness in the hope that our journey can help others navigate their way. I started keeping a diary because the doctors would ask me a lot of detailed questions during appointments and I would not have remembered it all without these notes. Even though some of what happened could arguably be considered malpractice, I have changed the names of all doctors, hospital, and hospital personnel because I do not want retribution, only effective change to our healthcare system.
Losartan, Amlodipine, Hydralazine, Isosorbide Mononitrate, Metoprolol, Carvedilol, Ramipril, Clonidine, and Nifedical. I knew all of the blood pressure medications by heart and could pronounce them like a champ. Often, doctors and nurses would ask me if I was a nurse. But none of the medications had worked. It was the kidney stone in his ureter that had caused his high blood pressure. A kidney stone that took over two years and stays in three different hospitals to find.
For six months, we celebrated at the beginning of each month. His blood pressure was normal and he didn’t need to go to the hospital.
Then, one day his general physician called. He said he must go to the ER immediately, that his most recent blood test showed chronic kidney disease stage 5—the end of the road. Ironically, he had been feeling really good. Craig knew the next step would be dialysis and he had always said he would refuse. He had seen his neighbor wither away while on dialysis—a time-consuming technique to prolong the inevitable. He said he would opt for quality of life over quantity. I understood and supported his decision.
Craig went to see his kidney specialist. She was one of those people with permanent frown lines. He tried very hard to get her to laugh, but it was obvious, it wasn’t going to work on this woman. With a solemn and serious tone, pointing her finger in his face, she said in her Polish accent,
“Do you know you have Stage 5 kidney failure?”
Craig sat there motionless.
She continued, “No more salt! No more smoking cannabis! Or you are gonna die! Do you understand?”
Again, no response. He was not afraid to die.
Well, I think that was the day he said to himself, “I’m done”. He went home and rolled a big fat joint and started smoking non-stop.
Two weeks later, he started having much difficulty breathing. He couldn’t lie down and every time he fell asleep, the lack of oxygen would wake him up with a start. It was like sleep deprivation torture. I kept asking him if he wanted to go to the hospital, but he repeatedly said no.
One afternoon, he was sitting up in bed and I was sitting on the side of the bed holding his hands in mine, crying silently. I was telling him how much I loved him, telling him what a great man he was, and thanking him for his love and counsel. I didn’t want him to see my tears. Then he looked up at me, stared intently into my eyes and said, as he had so many times before,
“You have the most beautiful smile!”
He thought I was smiling. Maybe he couldn’t see my tears because of my glasses? In that moment, I realized that laughing and crying sometimes look the same. As Joni Mitchell wrote in her song “Peoples’ Parties”, “…laughing and crying, you know, it’s the same release.”
Sunday evening, Craig started hallucinating. He was seeing bugs on the floor beneath his feet and started slapping them away with his slipper. He looked over in the next room and thought he saw one of our friends and called out to her, “Hi Christine!” I told him again that I thought we should go to the ER, but he said no. Then he picked up a bic lighter off the coffee table and tried to light his mouth. I think he thought he was lighting a joint. A few minutes later, he picked up his Albuterol inhaler and tried to light that with the lighter. At that point, I insisted. “Craig, we need to call 9-1-1. He finally agreed. The paramedics immediately took him by ambulance to the ER. I got him into the ER bed and exhausted, went home to sleep. I had had only had three hours sleep in the last three days.
The next day, I arrived at his hospital room and they had him tied down to the bed. He was miserable. I knew I had to get him home as soon as possible. I guess I knew it was the end of the road because I suggested hospice care to the nurses and they said they would speak to the doctor. They came back shortly thereafter and said the doctor agreed. Then, I felt guilty. Was I doing the right thing? He had no other family members so I was making this decision all on my own. I decided to speak directly to the doctor, and he called about fifteen minutes later. I asked him if he thought I was making the right decision and he said absolutely. I felt so relieved. I started calling Craig’s friends to tell them what was happening. When I arrived back at the hospital, he actually was very upbeat and he asked me to go down to the cafeteria and order a large chef’s salad and a yogurt parfait. I brought it back and he ate almost everything. It was his first meal in four days. I didn’t know that it was his last meal.
The following day they brought Craig home. They transported him into the living room and onto the hospital bed that had been delivered by the hospice company. His eyes were closed and he never opened them again. The last time we spoke was in the hospital, but he was home! He would never have to suffer the hospital again. Our dear friend Bill immediately hopped on the train from San Diego and took a taxi to the house. He showed up within hours of the news. He entered the room and solemnly kissed Craig on the forehead. Then, he took his hand and asked Craig to squeeze it if he could hear him, and Craig did, but his eyes were closed, and he did not speak.
That first night, the hospice nurse, a wonderful man in his early 40’s, stayed with me until after midnight helping Craig get to a relaxed place. He had me increase the doses of morphine slowly over the hours, speaking with the doctor before each dose increase until finally, Craig was breathing peacefully for the first time in weeks. He gave me a beautiful booklet that explained what to expect in the last weeks of a loved one’s life. I wish I had learned more about the dying process before the fact, instead of during.
The next day, several friends and musicians came over and we sat around the hospital bed in the living room. Dan pulled out his guitar and we sang a bit, some beautiful lilting harmonies for Craig.
I woke up the next morning early, around 6am and had a burning thought that I had to return the call from the priest assigned to Craig through hospice. For some reason, it suddenly seemed very important to me that Craig be given his last rites by a Catholic priest. As I was searching for the number, I thought to myself, just do it, if only for his parents, especially his dad who had been a staunch Catholic. I found the number and the priest answered and said he could be at our house in two hours.
“Grace, I think you should come now.”
The hospice nurse interrupted me while I was on the phone with one of Craig’s musician friends.
“I think you should come now, he is passing.”
I quickly hung up the phone and hurried into the living room. I sat down on Craig’s right side next to the hospital bed and took his hand. The hospice nurse was on his left side. Craig took three more breaths and with the last one, scrunched his right eyebrow and then, he was gone. The hospice nurse confirmed his death and said,
“He’s gone.”
I collapsed over his body as I heard the nurse depart.
“I’m going to leave the room. You have all the time you need.”
Sobbing, I held his face in my hands as I told him how much I loved him. I admired his profile that had always made my heart leap and I told him again that he had been a great man.
Twenty minutes later, there was a knock at the door. The priest arrived. I thought it was too late to give Craig his last rites, but the priest asked to come in. He felt Craig’s forehead to see if he was still warm and began the ceremony in Latin. I sat down on the couch. As he spoke softly, I looked up beyond the bed. Behind the priest was a photo of Craig’s dad smiling down on the scene—a photo that we had hung in that spot only a few months earlier. I got goosebumps. Craig’s dad had come to me that morning.
And just like that, the journey was over. The fight had ended. And my love was gone.
Next week, reflections on our journey.
Thank you for reading.