May 27, 2023

I'm struggling SO MUCH to be patient. Today we were out running errands, and I thought I was going to lose my mind so many times. I know it sounds petty, but its so very frustrating when I have to tell him things over and over again but he simply doesn't understand. It's the mundane things that drive me nuts. Trying to get him to climb into the car - he won't move out of the way so I can open the car door. I'll ask him many times to step aside, then try to direct him, but he stands there dumbfounded looking at me like I'm speaking another language. And to him I am. Once he finally steps aside, I open the car door, then he can't bend his head in and he thinks he'll damage his head getting into the car. Finally he accomplishes that, but his leg is still hanging out of the car door. I pick up his leg and put it in the car, and he responds with a scream of pain. By then I'm ready to slam the door on his leg so the scream is merely premature! Finally, a full 4-5 minutes later, he's in the car, has his seatbelt on, and I can finally pull the car out of the garage. We both got our hair cut today. It was quite a battle convincing him to sit down in the chair so his hair could be cut. We knew better than to wash his hair or even spray it with water. But at least the job was accomplished and he got a good cut. At Costco I struggled to convince him that the cart he just grabbed wasn't ours. Meanwhile people glance at us wondering what's going on. We stopped by the house between errands and I tried to get him to have something to eat and drink. That was largely unsuccessful. Then I spent a long time trying to get him to use the bathroom before we went out again. No luck. Then it's the constant assurances I have to give him that whatever we're doing is safe, and nothing is wrong. Meanwhile I'm muttering F bombs under my breath like a sailor. Or maybe not always under my breath. Each thing is insignificant, but boy do they add up. It's like my friend who has spent years caregiving for his son - it's like water torture. No drop is an issue, but the endless drops drive you crazy. But other times each of those tasks I mentioned can go easily. Sometimes he's able to do things, and other times he's not. On another note, last weekend was a dichotomy of highs and lows. Friends and family were here, and we had lots of fun and accomplished some tasks that made me feel so good. But then the lows... On Friday night we were going to bed late. First I couldn't get John out of the bathroom, and he yanked to towel bar out of the wall in the process. Then I couldn't get him upstairs to our bedroom. That was taking almost an hour when I finally woke up Ben asking him to try to help me or maybe carry John upstairs. I grabbed John's hands from above, and Ben gave him a little guidance, and suddenly up the stairs John went, as though we hadn't be struggling over it for the better part of an hour. Then 3 hours later I woke up to hear John making some grunting noises at the end of the bed. I was slowly pulling myself into consciousness when I smelled dog poop in our room - then my eyes jolted open when I realized there was no dog in our room. John hadn't been able to 'find' the toilet in our bathroom and had pooped on the tile around our bathtub, on the floor, then on the toilet as well. There was an inhuman amount of shit in that bathroom! So I spent another hour cleaning all that up, giving John a shower, scrubbing and disinfecting the bathroom, spraying air freshener, then finally going back to bed. The whole night was completely traumatizing. On a brighter note, I was cleaning up the dishes tonight after dinner and I burped kinda loudly. John just cracked up at me. It was a nice moment - he understood what happened, realized it was funny, and we laughed about it together. And for a brief time he had that sparkle in his eyes.