Navigating meal preferences can be tricky with ALS and paralysis
Preparing family meals as an ALS caregiver involves many considerations
The other evening, our daughter, Sara, read “Bread and Jam for Frances” aloud while I finished feeding dinner to my husband, Todd. He used to read this children’s book about a young badger with human qualities to Sara when she was little.
In the book, Frances has an aversion to eating anything but bread and jam. She eventually broadens her palette and enjoys a lunch of cream-of-tomato soup and an assortment of other food, “and she made the lobster-salad sandwich, the celery, the carrot sticks, and the olives come out even.”
Todd laughed. He is much the same way, which is something I know all too well because I’ve been feeding him for the last eight years since he became paralyzed due to ALS.
When I eat meals, I might mix it up a bit, but I generally work my way around the plate, finishing one item before moving on. I’ll often finish my chicken before I touch my green beans or potato. Without consciously thinking about it, I tend to feed Todd the way I like to eat, where nothing comes out even. And I like to be efficient, so when he finishes a bite of potato, I’ll get his next mouthful ready on the fork.
Todd sighs. “I guess I’ll have another bite of potato.” He prefers to finish a bite of food before deciding what to sample next. But that significantly slows down the process.
I recently found a solution that works for us both: a separate fork for each item.
A quality-of-life issue
Mealtime preferences might seem trivial compared with other aspects of my husband’s care, such as toileting, breathing support, and turning him at night so he can sleep and avoid bedsores. But while he’s still able to eat, food contributes significantly to his quality of life.
I have a lot on my plate, so it’s easier to cook foods that I like to eat, too. Sometimes Todd will request something new, and it might take me a while to come around to the idea. I agreed to make split pea soup, and I bought the peas, but they sat in the cupboard for a while until I finally made it. It was outside of my normal routine, and I had to plan ahead to soak and boil the peas. But it was easy, and we both liked the soup. I made it again a couple weeks later.
He recently requested chicken wings cooked in our air fryer. I bought a bag of frozen wings, but they’re still in our freezer. I haven’t gotten around to making them yet.
If Todd were healthy, he could cook food for himself. He used to be an excellent cook. But now his desire for variety falls on me.
I don’t always cater to his desires, because I don’t want to cook meals that I don’t like to eat. It’s too much work when I already have to do all the cooking and cleanup. That limits his diet mostly to things that I like, too, or can pick up at the deli or a restaurant.
Sometimes after I cook a meal and I’m about to sit down to eat and feed him, he’ll suggest an add-on.
“Could I get some garlic toast, too?” he’ll ask, even though the spaghetti noodles are an adequate carb.
I don’t say it. It’s a small request, so I pop bread in the toaster and get out the butter and garlic powder.
Navigating the minutiae of daily life with ALS and paralysis can be challenging. It’s hard for Todd to be so dependent on me for everything, and it’s hard for me to have him so dependent on me. We both need to practice patience and understanding.
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Tim Federwitz
Nice article. I am the ALS patient in my equation, but it's good to understand both sides. Also, I'm still able to feed myself, but I am also trying to get ahead of understanding what is yet to come.