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.
]]>He was very anxious for much of the day today, even paranoid. We had a visit with the hospice social worker and the spiritual counselor (Buddhist!) who works with patients regardless of their religious beliefs or lack thereof. In the hospital, the counselors were very interesting people and James loved spending time with them. One of those was a Muslim cleric originally from Izmir. He had a Ph.D. and his thesis was on Thomas Aquinas and Rumi! The social worker meeting went pretty well, but James couldn’t stay awake for most of time with the counselor. Later in the day we had a call with his niece the doctor and I talked with the hospice doctor. We may try a new medication if he becomes very anxious and agitated. However, that is likely to make him more sleepy, so I hope to avoid that.
His favorite chair for the breakfast room is a wood banker’s chair that he got many years ago when the police headquarters downtown threw some out. That was near his loft at Broad and Water, his first apartment when he moved to New York in 1985. The stretchers had come loose from the legs of the chair. Today our artist friend William glued them, tied rope around them, and twisted them very tight using some of our wooden spoons. He checked his work via a video call with John, another artist.
We are trying a sedative before bed so that James is more able to get in bed without anxiety. Tonight it worked pretty well, but he was even more sleepy as we got him in the bed and ready to go to sleep.
He’s having some visual hallucinations such as color outlines around objects. So far he is enjoying it rather than feeling scared.
Today again he ate more than previous days, which is great.
]]>Our daytime health aide started on Monday and the same man was here the last 3 days. He has been wonderful and is very patient and kind with James. It’s a 12-hour shift, so we can’t have him every day due to overtime rules. I haven’t figured out if I can get around that by paying extra.
We had to bump up James’s pain medication, so he is sleepy a lot of the day. He also is less clear mentally at times and a lot weaker physically. An aide holds onto him when he moves around the apartment with a cane or rollie walker. His appetite is greatly reduced, and the only time he eats a full meal is when he has oatmeal at breakfast. He sometimes has sweets with his coffee. Today I made him a radicchio salad with parsley and shallots to go with a savory croissant from a bakery, but he didn’t want to eat much of either.
Since January, he hasn’t been able to lie flat due to spinal metastases. Until today, at home he slept in mid-century modern adjustable sedan chair. No Lazy Boy for James Wagner! Yesterday our friend William disassembled the bed in the front bedroom and wrapped the mattress for disposal. The bedframe is now in the “north wing” as we call the newer part of our apartment. A porter from our building plus our night aide took out the mattress this morning and an hour later a hospital bed arrived. I was very happy that we were able to get him in the bed and comfortable. He almost immediately fell asleep at 7:30pm and is still asleep now.
We continue to have regular visitors and welcome as many as possible. James usually perks up when they’re here.
Our friend Paddy is now coordinating visitors for me. Let me know if I need to make a text or email introduction.
]]>While we were in the ER, the oncologist told us that the cancer has spread so rapidly that further treatments aren’t going to help. As soon as we could get discharged (many hours later) we came home.
The goal now is to keep James comfortable and pain free.
The hospital’s social workers quickly filed the forms to allow us to start hospice. We met with the intake nurse yesterday, and I spoke to one of the doctors on the phone. The first set of medications arrived last night, but we aren’t planning to make changes to his current pain regimen yet.
Rather than only overnight, we will now have a home health aide here 24 hours per day. I will take 4 weeks of family leave starting next week.
James is in good spirits and relieved that we won’t be chasing pain treatment constantly as we have done over the last 4 months. He also won’t have to suffer through regular car rides to attend appointments.
We continue to have regular visitors and welcome as many as possible. Our friend Paddy is now coordinating visitors for me. Let me know if I need to make a text or email introduction.
]]>In the morning his right side became weak and he was unable to use his phone or write. He needed help walking and listed to the right. I called the oncologist’s office in the early afternoon and they transferred me to him. I described the situation with the pain and weakness and he told us to go to the emergency room.
Schedule
We’re hoping to do more of these interviews with various friends and post them online as audio plus transcripts.
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