Don't bury me yet

A new resident has recently been admitted at work. He is an older man who went to the hospital for what he thought was pneumonia and ended up with stage four lung cancer that is inoperable and the doctors, because of his prognosis and age, are choosing not to treat it. It has already spread to his adrenal glands. So now he is at our facility facing death.

The first day I met him, I did my day-to-day work duties and made sure I knew his nutritional background. But, nearly an hour later, I knew where he worked, how he met his wife, why he liked his job so much, and his worries about his diagnosis. I sat indian-style on the floor of his room and listened while he talked openly about his life, and I really enjoyed it.

He and his wife have been married for 63 years. He is very scared.

Today we had a family meeting with his wife. It's a routine meeting so the families can meet the team members at the facility who will be caring for their loved ones. She listened very quietly and was very polite while all of us talked about her husband's care, but she only had one question and none of us could answer it. How much longer will he live?

She is very, very scared.

We tried in several different ways to describe the tumor and his prognosis and bringing in hospice services, but we could not answer her directly and she was very frustrated.

I could see her starting to panic and I wanted to yell, "No one knows! Only God knows!"

Finally, she was answered with the statement that went something like "Take it day-to-day. That's all you can do. We don't know how long he will be here. Treat each day like it's the last." She seemed to be pleased with that, and although she kept a smile on her face, you could see her heart breaking on the inside and her world come crashing down.

My heart really hurts for her tonight. Having been through this situation several times, I can put myself easily in her shoes, knowing how hard it is to not know what will happen in one week, in one month. I remember watching my grandma decline during her battle with lymphoma and reading the book hospice provided our family about death and its stages. I learned so much and I was happy to have that understanding of the process...until my aunt Polly was placed on hospice. I hated knowing how her body was deteriorating and being able to understand each stage of death as she proceeded to the next, until she reached the last.

My mom, of course, was not placed on hospice but rather, we played a guessing game with her. Each chemo treatment was so intense and built on the last that I often feared being told we would have to put her on hospice, but that day never came. Instead, we got the news of an infection, then of liver failure, then of pneumonia, then of kidney failure, then the ICU, then the vent, and then the last line I'll never forget: "Her heartbeat and pulse are artificial and being controlled by medicine. Eventually, that medicine will max out and her heart will stop. You can choose to let this happen naturally, probably in several hours, or you can choose to end it now. Either way, she won't be here tomorrow."

Our guessing game came to an abrupt end, and we no longer were left to wonder what would happen in a week, in a month. It was over. We decided then and there she did not need to suffer anymore and we let her go.

The second they unplugged her IV, her heart stopped, and it really was all over. It just didn't feel real, although I could see her heart monitor showing a flatline.

We played a six-month guessing game with her, and when it was finally over, I wished we hadn't. I lived with her, knowing in the back of my head that she might not live through it, but I treated each day like it might be the last I saw her. I felt like in some way I had cheated her, like maybe I needed to give her more credit and she could fight it.

I'm not sure if this can play into my resident's new life, waiting for death. My wish for him, and for his wife, is that they enjoy each other's company until the very end, and that when he is gone, she is able to find some peace with the end of his suffering. I hope that she does not sell him short and bury him before he is gone...something I am afraid I was guilty of with my mom.

She knew I worried about her and even said to me several times not to "bury" her yet. I felt bad that she saw that kind of worry in me, but I just couldn't be so strong for her that I didn't worry. I did. I hope she is not mad at me and does not feel like I counted her out too soon. I didn't mean to do that.

If this happens to me again, I'm not sure I would be any different. I worry, and I'm scared to lose people I love. All along, I worried that if I was "too positive" that I would be setting myself up for disappointment.

Truthfully, I'm not sure how this all fits into my resident's story. It just made me think of my mom and reminded me of how frightening and frustrating the "waiting game" is. Everything makes me think of her, and I miss her very much.