Hard to Swallow

April 3, 2024

3:13 PM

Gary Barg, Editor-in-Chief

There are so many life altering firsts when it comes to caring for our loved ones: the first recognition that something is wrong, the first medical diagnosis, and the first time that roles change in your relationships. One of the most dramatic firsts when my mom was caring for my grandfather was the first time we heard the word dysphagia (simply put, the difficulty or inability to swallow.)

Gramp was living with the latter stages of dementia when his symptoms occurred. I remember the call the doctor made to Mom on a Friday when he gave her until Monday to consider whether or not to place a PEG or feeding tube. We did a heck of a lot of research that weekend and learned a lot about how dysphagia affects our loved ones living with strokes, Huntington’s disease, cognitive disorders and many other causes.

Dysphagia Articles

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Dysphagia

My father had been living with dementia of the Alzheimer's type for several years and doing okay. When he had a severe pain in his back that would not go away we discovered he had two types of Stage 4 (end stage) cancer. The blow to our psyches was staggering. I extended my visit so that I could be with him while he was still able to communicate because I feared the day when he'd need too much pain medication (the cancer was already in his bones which is said to be horribly painful) that he would not be aware of anything going on around him--there was the dire need on my part to say so many things that there would not be time to say later.

The odd thing is that he'd not recognized the pain his body must have felt until the cancer had progressed to Stage 4. He never complained of pain, nor showed outward signs of pain (i.e. wincing, putting a hand to his side, etc.) his body also did not show stress signs of pain such as increased heart rate or changes in breathing pattern so we, his loved ones were not prepared for the fact that once he was admitted to the hospital he would never return home.

One day in the hospital he quite suddenly "forgot" how to swallow. He'd eaten the night before without trouble, taken his night pills and slept normally. At breakfast he had some difficulty swallowing bacon but no one was alarmed because he'd had an exploratory surgery a few days before and he thought perhaps his throat was still a bit sore from the breathing tube. However, by supper time he could not remember how to swallow. He'd put a spoonful of something in his mouth and it would dribble out the sides. First confusion then fear showed in his eyes as he realized that he couldn't think how to swallow. The nurse came in to assess him then contacted the doctor. From that moment on no nourishment entered his body through his mouth. His body had literally changed within hours.

A PEG tube was placed and remained in place for the remainder of his time (about 2 months) here on earth. The PEG did not bother him but he so missed chewing food! When it came time for the nutritional "goop" as he called it to be administered through the tube, we'd make a game of deciding what he WANTED to eat for that meal and conjure up images and smells of those foods in our minds then make chewing motions with our mouths while commenting on how good it tasted! The "meal" always ended with a lollipop or popsicle as long as he did not bite into them and would just let them melt in his mouth. Popsicles might required a tad of dabbing at the corners of the mouth to clean up, but the taste of it was worth the trouble. ;)

Vikey Day more than 8 years ago