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Charles and Kara.
Sep. 6th, 2023 10:28 pmCharles is so far beyond what any normal person's breaking point would be, I just felt the need to share, here. He's been posting irregular updates about Kara since her disastrous hospital stay a couple months ago, and they are all so eloquent and beautiful and absolutely devastating. He deserves better. I don't know how to help, I am a distant voice crying for things to be better, for him to have more support, without knowing enough to be able to offer anything of use. Other than Starbucks cards.
Cancer journey co-pilot’s log star date 9.6.23. Yesterday morning our Home Health nurse paid a visit. I told her I had already drained Kara’s catheter, replaced the stat lock, changed out her ostomy (which had made a mess), tended her butt wounds (which exploded at the hospital from neglect), replaced her bed pad and bath towel, and put on new Depends and shirt. I can do this by myself daily with Kara in the bed the whole time and even switch out the fitted sheets while she is mumbling in her sleep. It is harder when she fidgets and tries to overstretch her catheter tube or grab at sullied bath towels underneath her, as she did today, though. And this is just one piece of my role as head of the sick bay now. Executive decisions. Calculations. Supplies. Pharmacy. Medication. Communications. Cleanup and sanitation. Scheduling. Laundry. The list goes on and on. Thankfully I have a crew that continues to support and educate me. People will tell me they have dealt with this sort of thing. And I think to myself, 1) unless you’re a pro you don’t do what I can do, and 2), you don’t fully know the person my team and I do all this for. Which is the hardest part. Because a part of me has to stay outside myself through all this, knowing exactly who it is for and what that means in the consensus of linear time. No sleep. A left hand swollen with stress-induced eczema that looks like it has sustained a hundred paper cuts. Unfamiliar silences all through the house, building and building, without regard for the work we put in. And the work is changing all the time. I see the signs when everyone has left and I am alone at night with my co-pilot, who is seeing so much more with her eyes closed than I am with mine wide open. The nights are long and full of otherworldly dialogues that I am not part of. I am training myself to enjoy them as much as I can.
Cancer journey co-pilot’s log star date 9.6.23. Yesterday morning our Home Health nurse paid a visit. I told her I had already drained Kara’s catheter, replaced the stat lock, changed out her ostomy (which had made a mess), tended her butt wounds (which exploded at the hospital from neglect), replaced her bed pad and bath towel, and put on new Depends and shirt. I can do this by myself daily with Kara in the bed the whole time and even switch out the fitted sheets while she is mumbling in her sleep. It is harder when she fidgets and tries to overstretch her catheter tube or grab at sullied bath towels underneath her, as she did today, though. And this is just one piece of my role as head of the sick bay now. Executive decisions. Calculations. Supplies. Pharmacy. Medication. Communications. Cleanup and sanitation. Scheduling. Laundry. The list goes on and on. Thankfully I have a crew that continues to support and educate me. People will tell me they have dealt with this sort of thing. And I think to myself, 1) unless you’re a pro you don’t do what I can do, and 2), you don’t fully know the person my team and I do all this for. Which is the hardest part. Because a part of me has to stay outside myself through all this, knowing exactly who it is for and what that means in the consensus of linear time. No sleep. A left hand swollen with stress-induced eczema that looks like it has sustained a hundred paper cuts. Unfamiliar silences all through the house, building and building, without regard for the work we put in. And the work is changing all the time. I see the signs when everyone has left and I am alone at night with my co-pilot, who is seeing so much more with her eyes closed than I am with mine wide open. The nights are long and full of otherworldly dialogues that I am not part of. I am training myself to enjoy them as much as I can.
