Thursday, August 28, 2014

Update on John

John is more unsteady on his feet.  He can still walk from the house to the car, but with two people to keep him upright.  What scared me most though was that he couldn't eat lettuce, had to pull it out of his mouth.  He said it wasn't a swallowing problem but not being able to move it around his mouth to chew it.  But if his tongue muscles are going, the swallowing muscles are too.

Elizabeth and I and John's wine friend David and Deborah King sat around after his birthday dinner (after he went back to the nursing home) and talked about what he soon wasn't going to be able to do.  I encouraged David to move towards having the wine dinners in the small dining room at the Downs; he said sometimes he has been scared John would fall when he was helping him in and out of the car. Elizabeth found a thermostatic control that will work for John's wine refrigerators, instead of his system of adjusting timers as the temperature of the basement changes.  We also talked about the swallowing problems, which David has seen, and that John's drinking fine wine would be over at the point where he has to have thickened liquids.

I brought the first two points up with John over the next several days.  He said that he didn't think a new control system for the refrigerators was needed this year, though he accepted my saying it would make me feel better.  He said David hadn't said anything to him about being uncomfortable about helping him in and out of the car. I didn't discuss thickening liquids--he would just say he isn't having swallowing problems.

Elizabeth and I talked about what might happen while she is away at school. We agreed that he is getting close to the point of losing quality of life and would not go to the hospital and probably not get further antibiotics if the first ones used don't work (no therapeutic escalation). She wants to come home when something happens, and we will try to have the funeral within a week.

It hurt to feel her pain facing such difficult things.  I also feel so torn between my own instinct to come to terms with and plan for the end and John's denial that he is losing quality of life. I find it hard to feel my feelings when I know he would tell me that they aren't accurate.