There comes a point in this journey, when things become too real. It’s during that time that it becomes too painful to write. Perhaps a better writer than myself could channel that pain and turn it into something great. Not me. In fact, there was a point when I thought I may never write another chapter in this blog. It was too personal.
That long dreaded day has now come and passed. It was rough, much harder than I would have ever imagined. It’s an experience I don’t recommend. If you can get past the deep seated guilt that comes from having failed your loved one, then just be present.
There was so much I didn’t understand about the process of dying. During the final two weeks, I would spend hours sitting with him, talking to him and helping with his care. My questions were now being met with a nod or a dismissive shrug. He no longer greeted me with his usual happy greeting, “Hey there you are”. I could accept that the tumor was preventing him from talking to me, but then one of his favorite staff people would enter the room and speak to him. He would look at them, suddenly his face would brighten up and he would say “Oh hi there”. I would tell them that he wasn’t talking to me at all. Some of them thought I was joking. One nurse asked if I was being silly, I assured her I wasn’t. All of them thought I had been given the pamphlet about what to expect. I hadn’t. If I had, I would have known that dying takes energy. As his body dealt with all the changes that took place, it was normal for him to distance himself from his loved ones.
One afternoon, I sat with him as he slept. He moaned and twitched throughout my visit. At suppertime he clenched his teeth, refusing even his favorite frozen yogurt. I asked the nurses to medicate him for pain and settled him to sleep before leaving. I didn’t realize that I would never see his eyes open again. The moaning and twitching continued through the night. In the morning he was started on a continuous infusion of medications to control his pain and ease his breathing.
I then began a new learning process. I learned the difference between just sleeping and comatose; just sleeping and beginning to die. His doctor and nurses pointed out the very subtle details that they noticed. While his breathing was regular, it was almost mechanical, as if a ventilator was breathing for him. His doctor explained that he no longer had any conscious control of his breathing. Now he was breathing simply because his brain stem continued to keep him going. I called the family in. He was given a few hours to a few days. The kids arrived. He continued to breath comfortably and easily. As one nurse commented, when your family is around you, sharing stories and getting along, who would want to go?
I stopped going home. Sitting and sleeping at his bedside. Watching and listening to him breathe. As his breath became labored and his colour turned dusky, I found myself sitting with my fingers on his wrist. He was having periods of Cheyne-Stokes breathing; alarming periods of not breathing and becoming duskier by the moment, or so it seemed. I decided it was time to turn off my nurse brain and just be a wife. I had him medicated again and his breathing became quieter, more shallow and his colour remained horrible. His nurse agreed with me that he would most likely not make it through the night. The family was called back in; just a few hours after going home. Once they were back around him, his breathing eased, becoming more normal and his colour improved.
Finally the next afternoon, with his family present, he gave a sudden loud gasp and passed away. In the end there was no warning. He chose to go after my sister arrived to take care of me and before the others headed home for the evening. His nurse commented that he was taking care of me to the end. I don’t recall how long I stayed with him. I got the impression that it was perhaps not long enough by some standards. I did feel that If I stayed too long I may get stuck in the moment and never leave.
“The song is ended, but the melody lingers on.” – Irving Berlin