A neuro-psychologist once told me I had the tendency to "calamatize". I wasn't quite sure what to do with that insight as I found our condition to be a considerable calamity. But upon further reflection, I used the insight to understand myself better. I tend to want to know the worst thing thing first, so I know how bad it will get and what I will ultimately have to face. Then I can back in to the present, and make the most of it all.
Currently the most difficulty we are facing isn't the gradual loss of abilities, or the encroaching waste management issues. The most difficult for me personally are the extreme changes that occur from day to day, and in fact, moment to moment. It is a roller coaster ride of emotions that a control freaky girl like me finds terrifying and unsettling. I keep getting lulled into a false sense of normalcy. We can eat out together and enjoy the experience. True, I now have to keep giving him the utensils, as he eats soup with a fork and cuts his bread with a knife and fork. The seductive sense of normalcy however is brutal, as we are quickly whipped back into the rabbit hole of every day life as we now experience it.
Another tough one is the ever constant questioning, of all things, all the time, all day long, every day. The same questions and new ones, over and over and over and over. I search for kindness and try to avoid the obvious answer of, "I don't have any more energy or time to answer and you won't remember it anyway." I struggle constantly with the personal assault of feeling not being trusted. I know better, but when almost anyone else's opinion is required to validate whatever I have told him, it is tough not to feel not trusted. He will ask a random truck driver a question about the garbage pickup (doesn't have to be a garbage truck or a garbage man) to check out the veracity of what I have told him.
I thoroughly understand the refrain, "you have to take care of yourself", but I remain ignorant of how to actually do that. I am doing the best I can to get to yoga,for example, but struggle all the time with the resentment that this new responsibility is really entirely mine. I try to read and to learn and have begun to notice that most discussions of "taking care of yourself" end up in "taking better care of him." In other words, if you monitor food, water, waste, exercise, maintain careful and accurate records, etc etc of the patient, you somehow have lessened your "load". Sure sounds like you've made a giant new do-it list to me.