Frankly, I’m exhausted. It has been a week since we started 24-hour care, but we don’t have regulars for all of the shifts. Right now we have 1 person for Saturday night, 1 person for Monday through Wednesday nights, and different people for the other nights. We don’t have consistent aides during the day at all. The goal is to find people we’re happy with and limit aides to 3 different ones at night and 3 different ones in the day. Having new people so often means that I have to stick around to answer questions and help them with their tasks. We had one hot man who was interested in our Paul Sepuya book, so we hope he comes back. We have had a few people that we had to veto because they didn’t show enough patience with James.

He is nervous about going to bed and feeling comfortable, so it can take 30+ minutes to talk him into bed and get him to relax enough to fall asleep.

He eats less and less each day, but ate more food than usual today. A lot of evenings he drinks an Orgain protein and nutrition drink for dinner. Friends are bringing a lot of pastries in, so we are both having more of those than we normally would. We seem to be developing a sweet tooth that neither of us had previously.

He is very weak. I’m concerned about him continuing to use a walker. A few days ago he started to collapse while using it. The aide and I lowered him to the ground and he wasn’t injured. I called 911 so we could get help getting him back up. It took 90 minutes for them to arrive, while James was lying on a hardwood floor along with some pillows. Before the EMTs arrived, a 6’4” friend was here for a planned visit. He got James up into a chair. When the EMTs eventually arrived, we got James’s niece the doctor on speakerphone to give them a summary of his condition. They said his blood pressure was high and his blood oxygen was low (85-90%). They recommended going to an emergency room. We told him he was in hospice and wouldn’t go to the ER. A doctor from the EMT team talked with James on the phone and confirmed his decision, and that James seemed competent to decide not to go to the hospital. I’m glad he was clear enough to talk with the doctor.

We ordered a wheelchair for getting him around the apartment instead of a walker. It’s tricky to find one that fits in a New York apartment and its doorways. We also ordered a ramp so that he can go down the 2 steps into the living room. He is feeling very limited in the parts of the apartment he can visit now. Those should arrive by the end of the week.

We have an oxygen machine that he uses for 30 minutes when he feels out of breath.

Yesterday our usual barber, who has a shop on the ground floor of our building, came to the apartment to give James a haircut and trim his beard.

James’s C7 vertebra (C = cervical) is being destroyed by the cancer, leading to nerve compression and damage. This is causing weakness and numbness in his hands, especially on the right side. He can no longer write, and struggles to use his phone. Some days it also causes his voice to hoarsen or mostly disappear for hours. He has vision problems (double vision and lack of depth perception) due to a lesion near his sinus, and thus near his optic nerve. Most dsys he understands that we can’t do anything about his arms and hands or his vision. For many meals, an aide or I or a friend feeds him. He can drink from a glass usually.

Sometimes his mood is positive, but that is increasingly rare. He does perk up when friends visit, at least for a majority of them. He realizes that his concentration and grasp on reality are deteriorating. We haven’t changed his medication schedule in the last week, so this is related to the disease progression and not the pain medications. Some evenings he says he doesn’t know where he is in the apartment and asks me to tell him the layout. One night we sat in the gallery facing the living room with the floor plan of our apartment to make him feel better.