I mentioned that when we first met I was feeding him Thanksgiving dinner, right? I probably even mentioned that I was really impressed with his being able to still eat given his respiratory failure status. The chewing I can understand, but to swallow he had to not only manipulate the food to the back of his throat he had to also fight against the air pressure going in to coordinate the swallow. It is quite remarkable that he continued eating for as long as he did. He was quite proud of it too. :)
I have heard that before I had met him and before his diagnosis, that food was a huge pleasure spot for him. I believe it. He even signed a waiver with the nursing home to allow himself to still be fed by mouth even though he had a gastronomy tube. They tried to force him to give it up by making him have a swallow study done by telling him it was to prevent aspiration when it was really to make it more convenient for their staff (maybe a little of both) Standing there feeding him took a lot of time. The kinds of food he was able to eat the best isn't probably what you would think. If the temperature was too extreme he couldn't manipulate the food. If the bite was too big he couldn't manipulate the food. If it had a combination of textures..... you get the idea. He also hated to be fed with metal, he preferred plastic because it wouldn't hold the temperature and also because the bite sizes were easier to control. Candy was his favorite but it also meant that someone had to be right there to give him the next piece. He went through phases with his favorite candies. When he moved in here he had my cooking some but he had come home from living at the nursing home sick and underweight. I didn't have time to cook and I really pushed the meal replacement formula for him so that he could get some weight on. He resisted at first because he felt like eating was one of the last pleasures he had left. I had to emphasize to all the nurses that he is never to be told no if he wants to eat by mouth. That made him feel a lot better. He hated being told he couldn't do something.
The problem came with when he started choking on things he used to be able to eat. Luckily I was home for all of the incidents except one. But that one time almost did him in. The nurse had been feeding him gummy bears (sour, lol) and because the sour ones made him make weird faces, the nurse didn't realize he was seriously in distress. She eventually figured it out and messaged me (I wasn't home). I tried telling her what to do over the phone but she was freaking out. I made it home in under 5 minutes (don't ask) and went straight to getting him "unchoked". It isn't something that you learn in school and there is part of what you are doing that doesn't exactly make sense, but it works. I mentioned that his trach tube had a cuff around it to take up the extra space between the outside dimension of the trach tube and the inside dimension of his trachea.... well, if I deflated the cuff while also using suction in his mouth the air that usually goes into his lungs will come out of his mouth (because the pressure in his mouth is less that the pressure in his lungs, it's naturally diverted). When the ventilator pressure starts pushing air out his mouth it also will dislodge whatever he was trying to swallow (it hadn't gone all the way down either tube) and with the suction I had going in his mouth, I could latch onto the gummy bear and get it out. He also still had a gag reflex that helped. You have to be quick and decisive. There is no room for screwing up or hesitating. After he was stable the nurse called the agency and they refused to feed him any longer. Since the agencies were quick to drop him, everytime we hired a new agency, he was able to eat again for awhile. I still did... because I promised him that I will always do what he asked me to. But when it kept happening more and more, I finally told him that I will continue doing it as long as he wanted me to but that I really didn't want him to die because of a gummy bear. He stopped. He would still put them in his mouth and suck on them but he had to be mindful to keep it in the front of his mouth.
Sometimes when I was really afraid of losing him I would forget that he is afraid of losing function. It would always hit me later that I didn't think of things from his perspective all the time. I did when I regarded the decision as his but I didn't always when his decisions scared the shit out of me. At those moments I thought more of myself. I know that's natural, but now that he isn't here I think about those kind of things a lot.
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