My friend, John, with the help of a well placed friend in Washington, was released from hospice care and brought home today. He walks with a walker. Various hospice personnel treated me warily when I tried to get information because I wasn’t “on the list”. His son, Scott, was making the decisions but, genuinely caring as he is, Scott is not sophisticated in these matters and is inclined to do whatever medical people tell him is best. He signed a DNR. It was posted on John’s refrigerator. With John’s blessing I got rid of it.

John got the nurse into the room last time I was there and put me on the list of people who should have information. I then had standing to discuss at home assistance with the social worker but then John called to say he was coming home. I am relieved that he has escaped the clutches of “we’ll help you go into that goodnight, here we come, ready or not”. There are various kind of hospice care facilities – some genuinely try to help people stay viable, but the general, sometimes unrecognized, thinking is that the patient will die and this transmits a mood that is not beneficial.

John told me they kept hiding his cell phone. I would call, no answer. I'd call the desk, they'd check on him and say he was asleep. Never happened, he said, wasn't sleeping. Once I called three times and all day he was "sleeping".

Anyway, John’s home. I have been super mom to Buster, the doggie. Tomorrow I’ll take him for a medicated wash and a clip. John feels he has escaped just barely and I agree.
But he did get stronger while he was there because he was secretly exercising when they weren’t looking. They did not encourage activity that improves strength. Be a nice veggie, please. He had a minder for a while, a big guy, stayed with him throughout the day – the reason given was to stop him from trying to get up on hiw own and then falling. He told me it was to keep him a prisoner but they were giving him drugs that confused him. He told me he had been taken out of his room and put into another similar room, and then returned, with the intent to make him feel he couldn’t trust his perceptions. I am not inclined to think this is paranoia. Right now he is extremely lucid. A minister came to see him and he asked him how the hospice was run. The minister mimed a hand gesture that indicated “for the money.”

And this is one of the better ones. It’s painful for me to go there because it is where my sister died. She was only there for two days. In her case, perhaps, there really was no hope. I was not made part of it because Don kept me at arm’s length. He let me see her finally when she was in a coma and she died the next morning. You don’t get do-overs.

xx, Teal