Dementia Patients Eating (Alzheimer’s Research, Hospice Volunteer Story)

“Food? What food?”

As a hospice volunteer in Detroit nursing homes, I had contact often with residents not assigned to me. My hospice patients were always my primary concern, but most of them shared rooms with up to three other people. At mealtimes, my patient and I shared a table with six other residents. In the excerpt below, I am the only one at the dinner table without dementia. Due to limited staff, I knew I would have to supervise, encourage, and generally keep an eye on everybody at the table. A public school principal, I was used to multi-task management and didn’t mind assisting them at all.

Excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes :

I continued talking to Naomi (my hospice patient) and assisting her while monitoring others at the table. I noticed that Petra had not touched anything. Petra was not a very independent eater, but I knew she was physically capable of feeding herself by any means necessary.

“Petra, your food is just sitting there getting cold. You have a whole tray of delicious things to eat. You should eat some and see how good it is. You’re a good eater. Eat your food.”

“Food? What food? I don’t have none.”

“The food on this tray is all for you, Petra. This is your food tray right in front of you. Watch me point to each item. You have coffee, juice, milk, mashed potatoes, fish, broccoli, bread, and fruit. That’s your name spelled P-e-t-r-a.”

“That’s not my name. My name is Petra. That’s somebody else’s name. That’s not my name. I know my name.”

“Well, that is still your food on the tray. You should eat before it gets cold. Go ahead and eat. Give it a try.”

“Eat? Eat what?”

“Your food, Petra, your fish, potatoes, and everything else.”

“Fish? What fish? I don’t have none. Do you see a fish here? I don’t see a fish. I don’t have none.” 
(Note: Nowadays, I would omit some of the above conversation to keep her calmer and more focused on eating.)

From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Luckily, today she was sitting next to me. I gave her a taste of the fish because I knew she liked it. Then I placed her fork in her hand and started her off eating. I did this in steps by steering her hand and giving her directions on putting food into her mouth, chewing, and swallowing. Patients with dementia needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once somebody started her off. But without any help getting started, she would sit and look at the food she said was not there. My other hand continued to assist Naomi.

“Don’t do that! Leave my food alone! Get your nasty hands off my plate! Help! Can somebody help me?” screamed a resident at our table as if she were under attack. All the nurse aides were occupied feeding residents at other tables and experiencing their own mealtime problems. I was resigned to be the unofficial table captain. I told Roscoe sternly to leave Charlena’s food alone. He gave me a confused look, pretended he didn’t know what I was talking about, but betrayed himself with a silly smirk he thought I didn’t see. I leaned across the table and directed his attention to his own plate by putting his spoon in his food. He picked up his spoon and started eating again. Then I reassured Charlena that everything was okay, and she could finish eating. Charlena smiled with an air of triumph. Roscoe was in trouble, and she relished knowing she helped to get him there.

Rita had been watching me help Naomi and Petra eat. Now, she was attempting to feed George, but with her own used utensils. George had his mouth open obligingly, anything to help the cause. I interceded before any damage was done. By this time, several residents had spilled food on the table or the floor and had food stains on their bibs. Petra had to be restarted twice to eat the food she insisted she’d never received. I had stood to lean across the table two more times to settle other table disputes involving food and different residents.

Naomi ate right along during all the interruptions. I had been giving her ongoing praise on how well she was doing. I also praised others at the table when they did well. They savored the attention, and Naomi wasn’t the least bit jealous. She had already told the others that I was her guest and even offered me food, which I declined. I hadn’t gone there to eat and couldn’t even think about eating if I had. When one resident was praised, another would often say, “Look at me. I’m eating, too.” This reminded me of students at my school who said the same thing when someone else was praised. I laughed, thinking the world was a universal classroom. Maybe the stars in the sky were created to be placed on billions of people’s foreheads when they did something praiseworthy.

© Frances Shani Parker, Author, Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

My experience above is consistent with research findings on factors affecting independent eating among elderly patients with Alzheimer’s disease. Published in Geriatrics and Gerontology International, this Alzheimer's research study on independent eating is the first to generate objective data showing that difficulty in beginning a meal is a factor that hinders feeding independence by older adults with Alzheimer’s disease. The study also concludes that eliminating environmental interference factors and providing assistance promoting beginning a meal are necessary to assist older adults with Alzheimer’s disease.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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