Nicole shared her story in September of 2022.
The last week of my dad’s life, I slept in a recliner next to his bed just to provide any comfort, conversation or care he might need. One night I woke up, and he wasn’t in his bed. I searched throughout the house and couldn’t find him. Eventually I put my shoes on to go outside. He was sitting on the porch, just staring at the stars in the pitch-black night. We talked about many things that night, but mostly about his suffering. He simply wanted it to be over. Each night, he would say, “Maybe tomorrow will be the day; wouldn’t it be nice if it rained?” Dad loved living in the country and the smell of rain. He wanted his last day to be a good, rainy day with friends and family around.
Unfortunately, he was not allowed that option.
A hardworking farmer into his 70s, Dad loved putting in a good day’s work in his signature flannel shirts with cutoff sleeves. He was always caring for other people, whether he knew them or not, the kind of man who trimmed the hedges of our elderly neighbors in exchange for ice cream. He never burdened others with his own concerns — that is, until August of 2021.
His turmoil started in September 2020 when he experienced some chest pain while outside in the garden, one of his favorite places. He quickly shared this feeling of discomfort with Mom, and together they decided to drive to the hospital that same day. The first hospital couldn’t help him and transported him an hour away. The second specialized heart hospital couldn’t help him either, so he was then flown to yet another major hospital three hours away, where the doctors told him he needed to have quadruple bypass surgery. There was no conferring with my parents to ask if this was what they wanted; it was presented to them without discussion or collaboration with their children.
As Dad was prepped for surgery, he had to lay flat with a tube down his throat for seven days to ensure he was stable and strong enough for the procedure. He was advised not to sit up or he could die instantly. Being in this state was mental torture for Dad, and it was just the beginning of what became a yearlong nightmare.
After surgery and a total of 25 days in multiple hospitals, Dad came home with a strap-on heart monitor. He put on his strongest face for us as he followed doctors’ orders and therapy, but then he developed a blood clot on his lung followed by a hernia that required yet another surgery. The medications he was on caused bleeding, bloating, nausea and constipation. He couldn’t eat, which was really hard on him since he loved all types of food, Indiana melon and Dr. Pepper especially. He dropped from 185 to 130 pounds. He experienced terrible cramps in his hands and legs, and his skin itched constantly. Several times, he said, “I wish I would have just died in the garden.”
For an entire year, Dad struggled physically and emotionally simply trying to prolong his life. When he would tell healthcare providers that he wanted to give up, many of them would make him feel guilty about all the time and energy everyone had invested in “helping” him.
It was an ER doctor, a stranger, who finally said to him, “Mike, you’re not getting any better. Are you sure you want to continue on this path?”
This ER doctor gave Dad a choice. He was honest with Dad about his prognosis, and together they discussed the option of simply refusing medical care moving forward. Mom and Dad talked about it in private, then called us children to share the news. They were both happy this suffering would soon be over and that they were in control. They signed the hospice paperwork with their children nearby. The next day a hospice worker arrived at the house to provide training and support for our family.
During our family hospice training, we were told that Dad had the right to be comfortable and free of pain and that they would provide us with ways to do that. This was when they introduced Dad to the “white box,” a simple cardboard box containing medication to help patients manage their symptoms throughout the dying process.
“Where’s the pill to end it all?” Dad asked. Silence followed.
The hospice nurse then informed us that medication to end life was not a service provided by hospice or anywhere in the state of Ohio. Dad was baffled and disappointed. He thought that was what he had signed up for. He wanted to live the best life he could for as long as possible, but his death was imminent, and he wanted to have autonomy over the decision of when it would be.
We are a Catholic family, and we all believe that we should do the best we can to live but that God does not want others to suffer in the end. It’s already hard enough to lose someone and hard for them to leave us behind. That’s suffering in itself. But then, to have additional physical and mental anguish on top of that suffering — it’s just not necessary.
When Dad realized there was no quick pill, he just kept saying, “I wish this was over.” The next three and a half weeks were miserable for him, and for us. He was screaming in agony from the pain in his hands and legs from cramping. We would do our best to relieve his pain, but many times we just had to wait it out. The self-reliant farmer who had worked daily from dawn to dusk just one year ago now was limited to trying to take two laps around the kitchen table before slowly stumbling back to bed. He could no longer walk to his beloved garden, the barn, the porch or the bathroom. He knew he was dwindling away, and he also knew he couldn’t do anything about it. He could only wait as he deteriorated.
Then it rained. Dad slipped into the final stages of unconsciousness.
My brother and I took turns administering the “white box” medication to keep him comfortable and unconscious. We increasingly felt that the lack of an aid-in-dying law in Ohio not only didn’t allow the dying person to be in control of their dying process, but it put us children in control, which we didn’t expect, nor did it feel right. We were constantly negotiating the amount of morphine to give Dad, calling the hospice nurse to ask for advice every two hours when giving it to him. If one of us was late by two minutes or didn’t give him enough, we were afraid he would be in pain. It was a long, drawn-out process that lasted for many agonizing days.
Finally on September 3, 2021, my dad took his last breath. We thanked God his suffering was over.
As soon as he died, I was exhausted yet still wanted to act. I just don’t understand why medical aid in dying is not an authorized option in Ohio when it is in other states. If my dad had had that option, this traumatic event — my father forced to wait for death, terrorized by the pain he was enduring and the suffering it caused his family — could have instead been the planned celebration that my dad desired. I think we would have had an amazing party for him, a celebration of life with all his family here from across the country. Up here in Ohio, family reunions are the bee’s knees. You look forward to those types of events. This could have been that.
Now, one year since the passing of my father, my daily thoughts of him are mixed — wonderful childhood memories are overshadowed by the year of pain and suffering he endured and the lack of control he had at the end. I don’t want that for my mother. I don’t want that for myself. I want this law to pass in Ohio so that our terminally ill loved ones have the option of dying in the garden of their choosing.
