Bobbi Carducci was an in-home caregiver for her mentally and physically ill father-in-law for seven years. Issues they coped with included dysphagia, schizophrenia, age-related dementia, Parkinson’s disease, heart disease, C.O.P.D. and various infections that popped up like weeds in the summer. She describes what she did as creative problem solving on the run and hopes that sharing her experiences will ease the way for the women and men now caring for loved ones at home.
Rodger and Dysphagia
“Give me some real food! If I don’t get a sandwich soon I’m going to be a goner,” my father-in-law, Rodger, demanded.
For most of his life there were only two things he really enjoyed: taking long walks and eating. Severe Dysphagia had taken away his ability to swallow properly and Parkinson’s disease was limiting his ability to walk. He was frustrated and angry and taking it out on me.
“I’m going to tell the doctor. You wait and see. I’m going to tell him you’re keeping me prisoner and starving me to death.”
I bit back a retort that would only make things worse. I assured him, as I always did when he threatened to tell on me, that talking to the doctor was the right thing to do anytime he felt he was not being treated right.
“I’ll do it. You just wait and see!” he said before shuffling away in a huff. By the time he saw his doctor again he would have forgotten about the threat.
Despite my frustration and hurt by the ongoing accusations, my heart went out to him. I remembered my stays in the hospital for surgery and how much I looked forward to meals to break the monotony while restricted to my bed only to be served bland, tasteless food. I cringed at the thought of having to live the rest of my life with no salty, crunchy snacks or worse, no ice cream. Ice cream melts into a liquid in the mouth making it very hard to swallow.
Food is one of life’s great joys. It comforts and nourishes us. Families come together around the table to celebrate holidays and share the milestones of everyday life. Every culture has its favorite dishes lovingly passed down from generation to generation and Italians are known for their great food.
I had to find a way to create meals that would bring him some measure of enjoyment and maybe, in the process, ease his anger toward me. It was getting old real fast and the stress was getting to me. I didn’t know how much longer I could take it without having a meltdown of my own.
For weeks I’d been preparing pureed food and thickened liquids. Neither one of which looked very appetizing nor did they satisfy the urge to chew.
I tried to show him that the mushy stuff he insisted wasn’t food was the same food he used to eat. Only the form was different. I had him mash the potatoes and add butter and cream. He helped me prepare the vegetables and put them in the food processor and then put the food on his plate before carrying it to the table.
“This is real food,” he finally admitted. “But it’s not as good. I need the real, real food.”
I would have loved to have made him a meal of roasted chicken with a baked potato and fresh green beans on the side, followed by a big slice of apple pie with ice cream for dessert. I wanted to watch as he opened the top button on his pants and sighed with contentment. He should have been able to eat anything he wanted. But he couldn’t. The danger was too great.
I began to be creative in what I prepared. I pureed cupcakes and put a bit of whipped cream and cherry juice on top of them to satisfy his sweet tooth and I made chicken stew with all the standard ingredients and pureed it for him. The peas turned the stew green. It looked a bit odd but it tasted good. I thickened nutritional drinks with bananas and peanut butter and a bit of baby cereal to make milk shakes that didn’t melt in his mouth. He loved them. I cooked for him with flavor and nutrition in mind, rarely using prepackaged processed pureed foods.
Still the words, “If I don’t get a sandwich soon I’m going be a goner,” stuck with me. I lay awake at night trying to figure out how to make a sandwich that would satisfy him and still be easy to swallow. Finally one night, just as I was drifting off to sleep, an idea came to me. I was going to puree a sandwich. And that is exactly what I did. Here is the recipe:
Puried Sandwich –Yummm
Ingredients
-
- :
- 2 slices soft bread, crusts removed (white or wheat)
- 1 small can light tuna in water, drained (white tuna is firmer and not as easy to puree)
- 3-4 tablespoons of mayonnaise (add more if needed)
- 1 teaspoon of tomato juice
- Milk
Directions:
- Tear bread into small pieces and place bread in food processer.
- Add two tablespoons of milk to start and puree until bread is reduced to thick mush. (Add more milk in small amounts as needed)
- Divide pureed bread in half
- Put tuna and mayonnaise in food processer and puree until smooth. (Add more mayo as needed)
- Place half the pureed bread on plate. Form it into a square to look like a sandwich slice.
- Top with pureed tuna
- Spoon tomato juice on top of tuna
- Smooth remaining bread over top of tuna and tomato juice.
He enjoyed it despite the fact that he had to eat it with a small spoon, swallow three times and count to ten between bites. It certainly wasn’t perfect but it helped him feel as if he was finally getting the sandwich he craved and that meant a lot to both of us. After that success I began calling myself the puree queen.
On the Fourth of July I pureed skinless hot dogs and served them with a side of my homemade potato salad, pureed of course. I even convinced him to eat with us out on the deck. After that we took a short walk in the warm sun.
Every day I tried to make him some version of the meal the rest of us were having and when Thanksgiving came along I put homemade gravy on pureed dressing and mashed potatoes alongside turkey purchased in the baby food section of the supermarket. At the end of the meal he said, “This is just like my wife used to make.” I knew it wasn’t but as long as he enjoyed it we both had reason to be truly thankful.
Facts about Dysphagia
- Patients with Dysphagia are at high risk for aspiration pneumonia which weakens them and can lead to death.
- An estimated 15 million people in the United States have the current diagnosis of Dysphagia.
- Approximately one million people annually receive a new diagnosis of Dysphagia.
- Nearly 60,000 people die each year from complications associated with swallowing disorders.
- For more information about Dysphagia you can go to: https://dysphagia514.tripod.com/vitalstimtherapy/id1.html
Bobbi Carducci
Bobbi is also an award-winning author. For more stories about Bobbi’s caregiving experience and other important and empowering messages about caregiving, check out Bobbi’s blog, https://theimperfectcaregiver.wordpress.com/