At the end of life, searching for the right word

During the first few days that my mother spent in hospice, I silently sat by her bed watching her chest rise and fall, listening to her moan, counting her doses of Ativan, Tylenol, and Morphine, and tallying the days she’d been without food and water.

On day five of my vigil, I asked her nurse, “How long can Mom live like this? She hasn’t opened her eyes or eaten or had anything to drink for five days.”

The nurse replied, “The journey varies. But it may take a while because your mom is fighting.”

She’s fighting?

On day six, I asked, “How much longer can this go on?”

An administrator answered, “After eighty-seven years, your Mom’s not giving up easily. She’s a strong lady. She’s fighting.”

Fighting?

On day seven, when my chest constricted with each of Mom’s rasping inhalations and rattling exhalations, I pleaded, “Why is this taking so long?”

The nurse touched my arm and said, “Because your mom is fighting.”

Fighting what? Death? Life? Me?

The word “fighting” made me angry. Fighting is an action verb. Fighting is a purposeful act. Fighting requires thought. I wanted to yell, “Mom is not fighting! She’s not rallying the troops or stockpiling ammunition. The emaciated body lying in that bed isn’t plotting her next move. That body is nothing more than a Venus flytrap, a living organism capable of survival but incapable of fighting!”

Didn’t they understand that I was tortured by the word “fighting”? They said “your mom is fighting” and I heard “Your mom is fighting to live while you’ve agreed to withhold food and water so she’ll die.” They said “fighting” and I translated that one word into, “Your mom is fighting, but you’re furious because she isn’t dying fast enough.” They said “fighting” and I felt they were asking me “why aren’t you helping your mother?”

I held Mom’s hand and named the people waiting for her in heaven: I told her that soon she’d see Dad, her mom, her twin brother, and two of her grandchildren. I tried to say, “Stop fighting”, but I couldn’t. “Fighting” was the wrong word. But what was the right word? What word did I need?

I took my phone from my purse and searched for answers via the internet. I Googled, “How long can a person live without eating?”, “Does it hurt to starve to death?”, and “fighting death.”

In an article published in the Journal of the American Medical Association, I read that withholding nutrition and hydration is not synonymous with eating. Eating is much more than ingesting food and water. Eating is a social act. Eating is happily buttering your bread even if it’s burned or blowing out candles on your birthday cake. Eating is holding hands around the table, bowing your heads, and giving thanks. Months before entering hospice, Mom had forgotten how to walk to the dinner table, how to hold a fork, and even, how to chew food.

The same article promised that good nursing care and the body’s release of endogenous opioids would block pain and discomfort during starvation. So, if I could trust what I read, Mom was not hurting. Instead, she was resting comfortably with good nursing care.

In another article, I read that hospice patients can linger for seventeen days or more without food or water. Seventeen days. I ached for those other daughters sitting with their moms for seventeen agonizing days, and I prayed that I would not be one of them.

Then, I clicked on an article titled, “What Happens to My Body Right After I Die.” In the third paragraph I read, “At the moment of death, all the muscles in the body relax …”

I read the line again. “At the moment of death, all the muscles in the body relax.”

My eyes lingered on the word “relax.” As I stared at it, I took a deep breath and felt the knot in my stomach ease.

Maybe “fighting” is the word that an endless line of others needed or will need as they watch their loved ones slowly exit life, but it wasn’t the word I needed.

I needed the word “relax.” That word felt comforting, compassionate, acceptable.

On day eight, I didn’t ask the nurses, “How much longer?” I didn’t need meaningless words to fill the space between the question and the inevitable, unknowable answer.

Instead, I whispered in Mom’s ear, “I love you.” And then, I sat patiently by her bed and waited for her to relax.

And finally, on day nine, as I held her hand, she did.

K. Anne Smith is a speech pathologist.

Image credit: Shutterstock.com

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