Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough. We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home. I HATE WHEN THAT HAPPENS. I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face. Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin. When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note: he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty. He knows that I am jeopardizing my reputation for his sake.
Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times. I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head. It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him….. He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so, on the one hand, he feels guilty and on the other hand, he feels afraid. Yuck.