My wish was that, "As we hold onto hope for a day to call an important tomorrow, the remaining time that we have together shall be peaceful as can be"
Mar 15, 2013
Yesterday Tracy (the social worker) came to visit. It seems that at the team meeting, they talked about how Hajime wanted to give up the other day. Then they talked about his pickline and decided that they would put off replacing it according to Hajime's wishes. ...which means that if he were to have an infection later, they would not be able to give him antibiotics through the pickline. They would use only antibiotics that they can give him though his G-tube. Depending on the infection, they may not be able to destroy the bacteria.
I thought they had said before that even if Hajime were to say he wanted to give up, there would be no immediate effect on the course of his medical treatment. This was a huge shock. But that is something to be decided according to Hajime's wishes, so if Hajime refuses the pickline (replacement), then this is what will happen.
I've heard that people who are ill begin to change in some ways as they approach death. It seems the body is preparing itself (for the end). But I don't see that in Hajime. That's why I think he can hang on for a lot longer.
I had Tracy ask Hajime some hard questions.
1. What made you say you wanted to give up the other day? Did you feel something in your body? Or was it more an emotional thing?
. . . . . It was my emotions.
2. Do you think that you are closer to dying?
. . . . . No, I don't.
Are you getting weaker?
. . . . . I don't know.
3. You may think that you would feel discomfort if the respirator were removed, but when you are given medication, you don't feel discomfort...Knowing that, do you want to remove it?
. . . . . No, I don't, but I do want to be able to remove it when I want.
4. Your pickline will be taken out, but do you want a replacement after that? (he's already been told about the risks after removal)
. . . . . I want a pickline put in.
5. If your heart has stopped, if you have quietly passed away, or your soul has left, do you want resuscitative measures taken?
. . . . . Yes, I do.
6. Do you want to give up now?
. . . . . No, I don't. I wanted to tell you what I had been thinking before.
7. If your illness continues like this, how long can you fight?
. . . . . I don't know.
8. If you don't recover from ALS, can you still live at peace?
. . . . . Yes.
9. If you get an infection a month from now and you get sick, can you prepare yourself?
. . . . . No.
I asked him questions like these. I asked him many other questions but I'm giving you an excerpt.
It seems that Hajime wants to be included in discussing these questions. Until now, we had been careful not to let him hear when we talked about these things, but I think it is better to include him in these talks from now on.
I was anxious as we asked him these questions, but I was very glad to hear that Hajime does want the pickline put in.
The doctor and Mary will be coming today. I will talk about many things with them.