the agreement

day three of my visit here was unimaginably difficult for the family. They did not give Leif steroids that day- can't remember why so he was in a lot of pain. Eric had left when I arrived around 2. Mary texted him and he did not return her texts. Her level of agitation and frustration at him just kept rising as Lief's pain could not be controlled. He was sweaty with horrific diarrhea. Changing him was nightmarish with him screaming in pain, discomfort, humiliation- wearing a diaper at 8 years old. my god. When he sat up to play Minecraft he keeled to one side with fatigue and then became frustrated and angry. he screamed over and over "mama I am so weak!" He wanted to simultaneously watch x-men and was angry we could not download "the Lego movie 2 video game" from the app store. Mary was convinced Eric was at home drinking and was so bitter and angry, recounting every time he had ever "not shown up." She seemed to be building a case in which she had more right to decide Leif's fate then Eric.
The big conflict is that Eric and Mary are not on the same page as to what to do if the current last ditch chemo doesn't work. Mary wants to quit. She is done. She is convinced Leif is done. She thinks any more would just be cruel. Eric can not be done. He thinks if there is going to be pain and suffering then they might as well be trying to save him.  As an old friend of Mary's i see her point but I also see Eric's. I think Mary was working under the assumption that hospice meant the end of suffering but it doesn't and she knows that now because she talked to the doctors and made them tell her what it would really look like. It really looks like a fucking horror show with fluids leaking from all orifices, with unimaginable suffering as the Leukemia destroys the body, as pain meds fail to to control the pain. So if that is "hospice" why not be trying every chemo imaginable? Could it really be worse than that? Maybe. And that's the thing. It could be even worse and longer and more drawn out for nothing. This is my understanding of the choices they are wrestling with. Is there any chance of survival? of beating this? It doesn't look like it.
When Eric came to the hospital I tried to get Mary out of the room. We were all packed, I had her stuff at the door. We almost made it out but Mary couldn't stop herself. She went up to Eric, accused him of drinking? I don't know I couldn't hear, then he said something back and Mary wailed out in pain and began sobbing. She went to Leif asleep in bed and started kissing him and telling him how much she loved him, almost crawling on top of him until he woke. "mommy why are you crying?" "I am crying because I don't want you to be sick and I love you so much" "no mommy, why are you really crying?" at that point I went over and said "mommy's crying because she is way overtired and needs to go get some sleep" It felt like I peeled her away from him. She clenched my hand and I dragged her from the room as she sobbed. I hugged her and held her and tried to say things like "I am so so so sorry" over and over.
When we exited the hospital the night air immediately calmed her and she began to breath. I got her home and followed her from room to room as she did meaningless little tasks. I got her to fill the bath and finally get in the tub. I sat outside and contacted the group about what had happened and asked what they thought needed to be done. I got her into bed with a sleeping pill and a novel- she didn't want self help, she wanted meaningful fiction. I grabbed a Gunther Grass from her shelf and she went to bed.
In the morning I texted them both:
i need a 24 hr agreement from you both to be kind and gentle to one another. if someone is not kind the other is going to fucking pretend the other person was kind and thus respond kindly. i don't care what you really think or how much you have to lie to accomplish this. just do it. thank you.
I don't know if this had any effect but when we went to the hospital both were extremely polite and helpful to one another.  I have a feeling that this is their habit and my tough love was not really responsible for the change in tone. We reorganized the room, Eric got a piece of furniture from home with drawers so they have more storage. Leif got his steroids. There was some calm. Everett and I went into the family room during a changing and Eric came in after us saying he had been directed to come and talk to us. We were finally given the opportunity to talk to him about what he is feeling, get his take on hospice v more chemo and about what his plans were if (we were tactful but it rang a bit hollow) Leif died. His answer was exactly what I expected- a cabin in the woods. He was okay with Mary being dragged off to "away" saying he thought they both approached the grieving process so differently that they would kill each other if they tried to stay together. He said that the house could stay empty for about 6 months if needed. We were able to tell him their were people that would help with a short term rental if mortgage payments needed to be made.