Caregiving: What He Says and Means is Different

When not eating isn't about appetite. Getty

His appetite was always good, at least until his daughter, Gwen, came to care for him. Since her arrival, John barely touched even the smallest portions of his favorite foods.

“Dad, eat,” his daughter said.

“I’m not hungry.”

“But you ate only a small piece of fruit today.”

“Why aren’t you listening? I said I’m not hungry!”

Gwen asked her father’s physician if chemotherapy destroyed his appetite.

“No. The effects should not interfere with his appetite since your father’s treatment ended months ago.”

She consulted a nutritionist about the foods she fed him.

“The mix of foods is perfect. Your preparation and presentation are wonderful.”

Next was the neurologist since John, in his 80’s, exhibited a mild form of Alzheimer’s. She asked him if not eating could signal increasing dementia.

“Possibly, but we can’t be sure unless the symptoms intensify.”

WHEN WORDS AND BEHAVIORS MEAN SOMETHING ELSE

Gwen was diligent in trying to determine why her father did something harmful to his health. But none of the professionals suggested refusing food might be a message for an emotional need.  During my conversation with John, he confided little in his life warranted continuing on with it. He was prepared to die.I believed not eating signaled the type of turmoils found in patients with terminal diagnoses. I asked his daughter if they began end of life conversations.

“No. I don’t think my father is ready, and I know I’m not.”

HOW TO BEGIN

I suggested easing into the conversation by telling John how important he was in her life. I found the expression of gratitude opens many doors leading to end-of-life discussions. When I saw John again, he said the conversations during the week were the most meaningful he remembered having with Gwen, and what they talked about would make his death easier.

Eating was no longer an issue. When he and Joan ate together, they spoke about her childhood and the wonderful times they spent with John's deceased wife.

GOING BEYOND WORDS

We would like to think the words our loved ones use to convey needs are straight-forward and true. That’s a good place to begin, but when a message doesn’t seem to make sense, or behaviors are unexplainable, question their meaning.

In the field of linguistics (the study of language) the term metalinguistics is used.  Metalinguistics is the study of what words mean. Sometimes words mean what they say. But often, this “surface meaning,” has nothing to do with the term’s hidden meaning.

I find the more difficult the situation, the more likely messages will be clothed in qualifications or expressed in nonverbal ways, such as John did by not eating. The surface meaning of a behavior or word (a lack of appetite) may have little to do with its hidden meaning (a readiness to die).

Sometimes hidden messages are more subtle. An abrasive woman became sweet when her illness forced caregiving responsibilities on her husband.

Friends thought the personality change was miraculous. Her husband of forty years suspected something less grand. He was sure her overnight personality change had little to do with realizing how annoying she was to him and friends. Most likely the change was related to her needs. His simple question, “Are you afraid of dying, Dear?” opened a floodgate of emotions.

WHAT TO DO

Start with the assumption what loved ones say they need and what they do is accurate. But entertain the possibility they are trying to tell you something they either have difficulty expressing or are concerned you won’t what to hear.

In many ways, caregivers are metalinguistics, testing the truth of what is said and positing alternative meanings when an initial interpretation is proven wrong. In Shakespeare’s Macbeth, a witch throws strange potions into a boiling cauldron and waits for something different than the ingredients to emerge. Caregiving in many ways is similar.  

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