Terminally Restless

As I spent the final weeks of my sister's life with her, I'd often find myself trawling the web, trying to find any information I could about why she couldn't sleep, why she couldn't get comfortable, how I could help her, what information I could pass along to her hospice nurses that could possibly help her. She was young, in her early thirties, and she was dying from stomach cancer.

At the time, I could find nothing, nothing that seemed even remotely close to her situation. Hospice pages, forums, blog posts, they all dealt with someone at the end of a long life. Everyone seemed to have found the right pain medication combination, sleep medication, you name it. But my sister couldn't sleep. Her youth, her strength, her vigor (all of which we thought would help her "beat" this thing) all worked against her finding comfort, finding peace. One of the hardest things we had to deal with as caregivers was an onset of this awful restlessness. As soon as the sun began to set, she would be wide awake. She would want to sleep, but couldn't get comfortable. At first, we were able to move her from her favorite recliner to her bed and back, but as she lost mobility, this became increasingly difficult. No amount of pillows, blankets, supports gave her comfort.

What was this? The hospice nurse didn't know. He thought we should give her more medication, and we did, but nothing worked. During my Internet searches, I had come across some talk of terminal restlessness, a few paragraphs describing how some terminal patients suddenly experienced severe agitation, a change in mood, an inability to get comfortable. But there were really no suggestions, no tips on how to deal with this.

It's been several months since my sister died, and I still find myself searching for answers about my journey through the valley of the shadow of death. Yesterday, I found a personal blog about a man and his experience with his wife's terminal restlessness. I don't know who this writer is, but I found comfort in his posts. His experience mirrored my own. I wish I had found this site earlier. This connection with a stranger's writing helps. I don't know why it does, but it helps. It has spurred me to create this blog. I had started an old fashioned journal, you know pen, paper, analog, hah. But this person's blog has been so helpful to me. There is nothing out there, nothing for what my sister and my family went through. It's not surprising; her cancer was rare. She was young. This doesn't happen to people like her. People we know don't get cancer, and if they do, they "beat" it. But when it does happen to someone you know, someone you love, you can find yourself searching, searching for any sign that others have gone through what you're going through.

Selfishly, I hope that this catharsis will help me. But I also hope that someone, someday, as they find that they've landed in the hellish landscape created by cancer, searching the Internet, late at night, looking for answers, for connection, for some hint that someone else is going through what they're going through finds some help in this blog as well.