James is sleeping more. Yesterday he napped for a few hours in the late afternoon, then got up for a while before going to bed early. The night aide usually wakes him around 7:30am so that he’s at the table and having orange juice and oatmeal before they leave at nine. I get up and shower in time to be there with James before the aide leaves. Today he wanted to stay in bed until 9, then insisted on getting up right away.

He is frustrated by the fatique and confusion from the pain medications, but his pain is also increasing. We are increasing the Dilaudid from every 3 hours to every 2.

He is eating much less now, so his strength is declining rapidly. I think we are only a few days away from him staying in bed the entire time. He says we wants to stop eating, and that he’s ready to just go to bed and sleep all of the time.

None of the wheelchairs we have tried are suitable. We can’t find one that is narrow enough for our apartment that is also low enough. I don’t know how anyone could use a chair that has a seat 21 inches off the ground. He has trouble walking with a rolling walker more than a short distance.

To be ready for the wheelchairs, or just to protect art from all of the people coming in with backpacks, we moved some art into storage. Our friends William and Paddy know the owner of an art handling company, so he gave us a good deal on storage. William helped me measure and photograph works 2 nights ago, then the art handlers picked them up yesterday morning. He has been a generous helper during this process and came yesterday morning to work with the handlers. This despite living in Ridgewood and in the midst of renovating a loft for their new apartment.

Our friend David has been invaluable. We know him via ACT UP friends, and also from going to a lot of theater together. We are getting to know him better now, and didn’t realize he has worked as a caretaker. He has also been with many people during hospice, including family members. He has given me a lot of practical advice about logistics plus legal and financial planning. We also talk about what to expect as James declines.

James hasn’t had a back rest since we installed the higher toilet seat. Yesterday William measured and photographed the area at 11:30am, and by 9pm John delivered the back that they built, including a drawing of James by William.

Toilet back with drawing of James

His niece the doctor is visiting tomorrow afternoon. My 60th birthday is Monday, so I’m going out for lunch with a few friends while she’s here in the apartment with James.