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It was Halloween. I was seven or eight years old, gazing blankly out the window of my second grade classroom at the falling leaves, when I, like my classmates, startled in response to a knock at the door.

“Come in,” our teacher said.

There was a long, drawn out creak from the door’s hinges, and then a robust, staccato cackle.

“Eeeee he-he-he-he-he-he!”

I didn’t recognize her at first. It took me a moment to look beyond the pointed black hat, green face paint and tattered dress to see the witch for whom she really was – our school librarian.

“I have a Halloweeeeeeen story for you, boys and girls; if you dare! Eee he-he-he!”

Ordinarily, our librarian was a delightful woman. She helped me with the Dewey decimal system, put on little puppet shows from her reading rocker, and once, on what must have been my lucky day, I even got to assist her in stapling a seatbelt safety poster to the bulletin board in the library. I had, prior to this day, no knowledge of her interest in the sorcery, wouldn’t have suspected she had any inclination toward the occult, but here she was, cackling and wearing a black hat. You could just never be sure about people.

The integrity of our swallow is impacted by our expectations regarding what we’re about to swallow, and we form our expectations with our senses. We see the liquid in our cups. We see bubbles in our sodas or steam rise from our coffee mugs. We feel, by holding our cups, that the beverage is cold or hot, very full, or almost empty, and we make adjustments accordingly. We see and smell our food, and this makes our mouths water.

The librarian took us in small groups, three or four children at a time, into a book closet for the Halloween story. She ushered each of us to a seat, turned on a flashlight, aimed its beam toward her glistening green face and switched off the lights.

“There once was a man named Joe,” she began.

A man named Joe. A terrifying first sentence! Everything is scarier in the dark.

It seems Poor Joe walked across a goblin’s land late one Halloween night, and goblins, it seemed, were real sticklers about private property rights and trespassing ordinances. The goblin put some sort of hex on Poor Joe so that he fell apart, piece by piece. (And again, this was in the 80s when you could tell small children stories about monsters and mutilation without fear of litigation; a quaint time in American history.)

And there, in the distance,

his house he could spy,

but just for a second…

for out popped his eyes!

“His eyes, boys and girls. Here they are. I will pass them around. Feel for yourself,” she said.

Our witch librarian had Poor Joe’s eyes in her possession! In a bowl! It was too dark to see them, but she passed that bowl around so that we could feel them with our hands.

I was overcome with panic when the bowl started toward me. Are they dried up eyes? Are they slimy? Covered in blood? I wanted to trust the librarian, but my fear won out. Everything is scarier in the dark.

The librarian sensed, even in the dark, that I was fearful. She gave me an out.

“You don’t have to touch them if you don’t want to,” she said. I let the bowl pass over me.

Once the scary story was over, our librarian turned on the lights and showed up the remains of Poor Joe. The eyes were not eyes at all, but peeled grapes. His severed ears were actually dried apricots. His tongue was nothing more than a piece of bologna.

“Can I touch them now?” I asked, suddenly desperate to prove I was not afraid of grapes.

“Go right ahead,” she said.

I think our patients with dementia must feel a lot like that at lunch some days. I think that meal time, in the acute care setting, can be spooky.

These patients are as unfamiliar with the hospital room as I was in that book closet. They don’t feel well (hence the hospitalization), they may be on different/additional medication (and all that entails), they are in a different bed, there are unfamiliar people coming in and out of the room at all hours, and these people are intent on making them do things they don’t really feel like doing. Like eating on command. Sometimes caregivers, the loving and well-intentioned sons and daughters of these patients, even try to feed them while they are lying in the bed half asleep.

Let me say that I completely understand where these caregivers are coming from. They love the patient, they care for his/her health and comfort, and they want to do everything in their power (which is not much) to facilitate recovery.

They have been told that the patient has to eat well, get hydrated or have a bowel movement, in order to be discharged from the acute care setting. Maybe the patient is on a calorie count. Perhaps there is talk of starting enteral feedings. Whatever the circumstances, eating is critical, and time is of the essence, so lunch time starts looking like this:

“Eat, momma,” the patient’s daughter will say. Then she will scoop up a spoonful of pureed, hospital-grade who-knows-what and bring to the patients lips. “You’ve gotta eat.”

“Momma,” the patient, has advanced dementia at baseline. She has been quite sick for three days now. She is saying very little and is sleeping on and off throughout the day. She may be asleep right now. At the very least, she is resting. Her eyes are closed.

“Here momma, eat.” Momma clamps her lips closed as the spoon approaches and turns her head to the side.

“She is so stubborn,” the daughter then says.

Maybe “Momma” is stubborn, or maybe she is spooked. Perhaps she, for lack of sensory input, is “in the dark” about this lunch that everyone is so intent on her eating. Perhaps she is grossed out and unsure, like me when Poor Joe’s eyes were passed to me. Maybe she is politely refusing in order to feel safe.

Caregiver education is critical in situations like this, and eager-feeder family members are generally very receptive to any tips we have to offer. I like to start by helping the caregiver imagine what the patient may be feeling.

“Imagine you’re in bed,” I will say to the daughter. “Imagine you are sick and half asleep. It is difficult to keep your eyes open. Imagine you hear voices, but some of them are unfamiliar. And you smell food, but it isn’t the smell of a food you typically cook. And now a spoon is coming toward you. What do you do? Do you open up wide and let the person with the spoon, a person you may or may not know, plop the food in your mouth?”

“No I don’t,” she says, cringing at the thought of it, and it starts to makes sense – how dark it can feel to be fed when you’re very sick. Everything is scarier in the dark.

“It’s like if you have ever taken a sip from a cup expecting coke, but find that it is water or iced tea. You ever do that?” I will ask.

“Sure,” the caregiver will say.

“And what happens?”

“I cough.” You can see the light bulb go off. She gets it, and it changes the way she interacts with her loved one at meal time.

light

The integrity of our swallow is impacted by our expectations regarding what we’re about to swallow, and we form our expectations with our senses. We see the liquid in our cups. We see bubbles in our sodas or steam rise from our coffee mugs. We feel, by holding our cups, that the beverage is cold or hot, very full, or almost empty, and we make adjustments accordingly. We see and smell our food, and this makes our mouths water.

That is how we eat. Lights on. Our patients lose some of that when the food is on a tray across the room, covered in a dome. They lose some of that when we feed them. When we hold their utensils. When we offer a spoonful of puree spaghetti while their eyes are closed. Metaphorically speaking, we ask them to eat in the dark. It is spooky. They are unsure. They pass.

We need to teach caregivers how to turn the lights on at lunch; how to keep mealtime from being so spooky. Some of the things I recommend to families include:

  • Be patient for the times the patient is awake and alert, and then position appropriately.
  • Talk about the food, describe the food, and encourage the patient to look at it and talk about it, too.
  • Mention to the patient if the food is hot or cold.
  • At the start of the meal, have the patient hold the cup or utensil, and then hand-over-hand assist.
  • Offer choices for each bite: “Do you want more of these mashed potatoes, or do you want some of the peas? What looks good to you?”
  • Allow the patient to touch the food with his/her fingers, if he/she is inclined.

Do you have any tips for turning the lights on at lunch? What advise do your patients’ caregivers find helpful?

 

6 COMMENTS

  1. Hi Ginger
    You’re a skilled writer! Even though Halloween is not widely celebrated in South Africa, I am certainly going to use this to teach students. Your lights metaphor is an excellent way to teach students insight into what it must be like living with dysphagia. Thank you!
    Mershen

  2. I will be quoting you regarding the “integrity of our swallow is impacted by our expectations”! Profound to me and my home health caseload. Voicing what we see and smell when we are eating is valid-even if it is criticism! Proprioceptive skills play huge into independent eating and consults with OT and PT are so helpful. I try to have a cup of coffee or water or something in front of me when assessing/treating patients with dysphagia. It makes the event more engaging- easing the patient’s comfort level for ongoing intake. I use childhood memories of foods with seasons and I talk about food and recipes and cooking before and after meals. I try to explore what really tastes good to them in order to work with kitchen and staff. Calories and sufficient intake are very relevant in therapy interventions. I love this field!!!! Thanks for shedding increasing light on an area that the public are still very much unaware of- speech therapists and our work with swallowing disorders.

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