Tuesday, April 5, 2011

I had a long talk with the doctor and he agreed that I could not bring John home in the shape he is currently in. He recommended that palliative care be contacted and I agreed. A few hours later a lovely lady named Glenda, showed up and talked to me and examined John. The result is that John will be moved to Langley Hospice tomorrow morning. It is on the same grounds as the hospital.
This has many advantages including having a palliative care doctor who will do a re-evalation of all his meds and find something to help the pain without causing hallucinations - and to just make him comfortable
More intense nursing care
A room with a couch in it that I can sleep on if I ever want to stay over
Once they get him stable and lucid, thee is the chance to come home on day visits or if he should bounce back, the chance to come home again to live.
I was amazed that they had a bed available.
We have to pay to have him there but it is a little cheaper than a nursing home.
I am not sure whether John fully understands where he is going, but he seemed to be understanding most conversations yesterday. Margie and Trudy were over to visit in the morning and Gilmara and Margie were in in the evening. He seemed glad to see them but none of us could understand most of what he said. I think that some of the hallucinations have to do with bees - and he gets quite angry when I say don't worry there is nothing there. His brother Jim, tells me that he and John and sister Ruth were all stung in an encounter with bees when they were kids so maybe that is where this fear comes from. I pulled a Punch Adams and and told him I had shot them all with a gun. He did not seem amused.
As far as the day went for John it was pretty bad - especially the afternoon. John's muscles spasms have started to effect his whole body at the same time so that he goes rigid and spasms and shakes for 15 - 20 seconds from head to toe. This is new and started yesterday. As you can imagine that is very painful. But because he had not had a BM in 8 days (which is critical in his case because his PD drugs absorbed through the bowel) they gave him a massive enema so that he had pain and cramps from that as well. I told him he must have been having a 10 pound baby but when they changed him the nurse said it was more like a 2 oz baby. In other words it had little effect. But he sure suffered. His hospital gown and bed were absolutely drenched with his sweat and when they came to change him they had to change absolutely everthing because it was all so wet.
The male nurse who came on at 3:30 finally called the doctor and asked for John to be given more Serequil to quieten him down and give him some measure of comfort. The doctor had refused to do that before but this time he agreed. That made a big difference. Although he was still hallucinating and grabbing at his sheets, tubes or anything else he could get his hands on, or fighting off bees,  in between he was able to lay still and rest and the spasms and cramping disappeared.
I am looking forward to getting him moved into the Hospice and then we will see what happens next. More than anything else I hope they can make him lucid and comfortable.

two thumbs down for the day but one thumbs up for the hope of more effective care and treatment