Food and meals have become a chore. I have tried all of his favorites, to no avail. And when I do find something he likes, he only eats a 1/4 portion and may not want it again for days/weeks. I throw away or freeze many things.
Greater’s Peach Ice Cream tasted good in June. I bought a dozen pints, I still have most of them. As soon as I bought them, it didn’t sound good anymore. So, I buy small quantities and go back often to the grocery. An apple sounds good, but only a little less than half an apple once a week. A flank steak sounds good, but not the day that he asks or that I cook it; three days later and only 3 thin slices.
So, what works? Well, on the way to the grocery, I ask if there is anything I can get for him. Usually, the answer is “No”. But the other day he said that I might laugh, but do they still make Vienna Sausages? As a matter of fact, they do. When I got home he ate a whole can! WoooHooo! Something tastes good. So those have made it to the new snack area in the kitchen.
Things that taste good!
Things with sugar in them are the winners. Fig Newtons, Oreos, applesauce with cinnamon and sugar, not the unsweetened version, mini Reeces Cups, Nutri-Grain Bars, bananas and toast with honey.
Meat in small quantities. Half a slider or a few slices of beef; not really interested in chicken…Tuna salad tasted good, for a while, but not right now.
Pasta with butter, no sauce, and a tiny bit of parmesan cheese.
Cereal, I think because it is easy, sweet and has milk on it.
Nuts — 1-2 peanut butter crackers, 3-4 macadamia nuts or a pecan, roasted not salted.
He still drinks a glass of milk sometimes,
And the biggest surprise of all — a Quarter Pounder from McDonalds! We took a drive in the country this morning, and on the way home we drove past a McDonalds. It was 11:45, so I asked if he wanted one. YES, that sounds good. He ate about 6 small bites, but at least it tasted good and he ate, about 1/3 of the burger.
Things that don’t sound good any more.
Salt. Everything seems to taste salty and terrible if salted. No bacon, it used to be a favorite breakfast food, but no more. Eggs don’t even sound good. He used to love egg salad. Veggies, salad, mashed potatoes; no, no, no. He used to be a big cheese nibbler, not any more.
I’ve decided that whatever he wants, he gets.
I do push two things: Boost/Ensure high protein, low sugar drinks & water or water flavored with non-caffeine powdered flavors. Henry has never been a water drinker, “fish do dirty things in it”. So, I use Crystal Light (decaf lemon) Tea powder, Nuun tablets (1/4-1/2 tablet per glass of water) and Cool-Aid liquid squeeze bottles of flavor. He seems to like citrus and likes it very weak, not a strong flavor. And fortunately, I was given a countertop ‘Sonic Ice’ ice machine last year for my birthday. He teased me unmercifully for my addiction to ‘Sonic ice’. Now he is too. Even though he doesn’t eat, he does like crunching the ice. (FYI Sonic sells it by the bag.)
We no longer think about 3 meals a day, it is more like small (tiny) nibbles all day long. We do try to start the day with Cream of Wheat or toast and honey, followed by a Boost/Ensure. He sleeps, snacks, watched 24 hour news, and work (plays) on the iPad for a few hours. I offer lunch, a bit of meat, chicken/egg/tuna salad or anything. He usually says, ‘no, just bring a Boost/Ensure’. An apple sauce, a few sporting events and a peanut butter cracker or Fig Newton. A couple of Advil helps about 5-6:00 when he has his afternoon sinking spell. A Prilosec too. He isn’t eating anything to give him indigestion; but, I think he is just looking for something to make him feel better. Dinner-time, nothing sounds good. Half a slider, pasta, cereal, Boost/Ensure? Down the stretch, whew almost there, a struggle to get to bedtime. Jeopardy, drain chest port and a few episodes of the current series we are watching.
He has lost 20-25 pound since December. I, on the other hand, have gained 10 pounds since May when he was diagnosed. Trying to find what he wants to eat, many left-overs all around, sugar everywhere and I’m done for. So, three days ago, I started back to my healthy and hopefully more disciplined routine. We will see.