Wednesday - May 21st, 2008

Dave stays at the hospital until noon and then Lena comes in. Twice a week, Lena will stay until 10 pm, make sure mom gets her Ativan around 9:30 (which will help her sleep) and gets her pain med around 10:00. Then Lena will go, mom will be alone - hopefully asleep, until Dave gets there around 12:45 am. Other nights, Lena will leave around 6 or 7 pm when I arrive after work. I think we'll be able to keep this to about 40 hours per week for Lena, and Dave and I can cover the rest.

Wednesday, I was at a client's when the hospital number showed up on my caller id on my cell phone. I answered it, and found that mom was calling me to tell me that she was done with this shit. (her words, not mine.) I was to come to the hospital immediately and take her home. I have to say that I am getting very good at not freaking out about these calls anymore. If I were here, I'd be angry too; I'd want to go home too; I'd want things back to how they were a few month ago. I do want them back to how they were.

I told her I'd be over as soon as my meeting was over, but that it might be awhile. I knew Lena was in the room and wasn't worried that mom would try to "escape" before I got there.

I called Dave and learned that mom had been very upset this morning. She had misunderstood the doctor, and in response refused medical treatment... no pain meds, no ativan, nothing. I found out that he had talked to her about putting in a PEG to help keep her from vomitting all the time. She got very upset about this conversation. And even after Dave left for work, and Lena was there, she was very agitated and angry.

On my way to the hospital with Damara (she'd been at the meeting with me, and hence was about to make an unplanned detour with me,) I called mom. She was upset about bizarre things. Dave hasn't been to see her in weeks... uhmmm, okay. And he was going to steal all of her money... uhmmm, what money? And how could he leave her alone like this... yeah, okay mom, men suck (we've had this conversation many times... and no, I don't believe that, but there wasn't any point in having a discussion about it right now.) It was the "men suck" comment that led us to the path of how much she hated her doctor. She thought he had told her that she was going to die. (Maybe he did.) And she thought he wanted to put the tube back in her nose. Actually, he wants to put in a PEG (a tube that goes into her abdomen through her side to drain her stomach since her intestines are not fully functioning). But she only heard part of what he had said, and she was really, really upset by what she thought she heard.

I talked to her for the entire drive, and by the time I was in Edina, she was calming down. I told her I wouldn't let Dave steal her money (not that he ever would, but it was what mom needed to hear). I told her that I wouldn't let Dr. Boente put another tube in her nose. I told her that Lena would help me beat up all the men who were messing with her if they didn't stop (she actually laughed when I said that.) And I told her that I would bring her a fillet of fish with lettuce and tomato from McDonald's. She loves McDonald's fillet of fish...

When we got to the room, she was still angry, but not as bad as she had been. I checked her med listing right away, and sure enough, she hadn't had any Ativan since 1 am the night before. When I asked about this, the nurse told me that she had refused any meds in the morning, and that on subsequent visits to check on how she was, mom never said she needed Ativan, she just said she felt "weird." Yeah, weird is how you might feel if you had cancer, anxiety issues, pain, and didn't get your meds.

And so, it seems we are on a roller coaster ride. I am not a fan of roller coasters anyway, but this one is really awful. I feel like I didn't have a choice about getting on, I can't see when the hills, dips and curves are coming, and I don't know how to get off. All I can so is try to minimize how I feel when we go around the curves and up and down the hills.