Surprise, Surprise, Surprise

Entry 1     10:40 a.m.

If you read Caringbridge, you know that Jenny has had a miraculous recovery. She is doing so well, in fact, that not only has she stopped having hallucinations, become lucid again, gained weight, has a normal blood pressure, and is walking without risk of falling. I haven't any idea what happened, but it is nothing short of a minor miracle, truth be told. My relief was so great that on Saturday I slept for hours during the day. I'd call it a nearly complete collapse. I am recovered, if not restored. The girls' worry has abated greatly, Leiney still wary that a reckoning with this disease is near. 

 Entry 2    3:00 p.m.

Last night Jenny convened a meeting with family, the girls included, to discuss what hospice looks like.  This arose, initially from her anger at my Caringbridge post of last week. She has zero memory of how sick she was, and truly thought I was being maudlin, overreacting, or perhaps engaging in wishful thinking.  

Dave and Moni, Mike and Jane, Leiney and Abby, Chris, Jenny and I all gathered around the fireplace. Abby was sitting in the wing-back, Jenny and I on the floor in front of the fireplace, Jane alternated between the bar and floor, with everyone else on the sectional.  Jenny had a poster board sized sheet with two lists on it.  Wants and Needs.  Jenny wasn't sure why she called the meeting. None of us was quite clear whether she was about to announce hospice (never going to happen) or tell us she never wants it. The discussion was good. We talked about the difference between a DNR and an advanced directive. Jenny made it clear she doesn't want to have artificial feeding or to be intubated.

There were a lot of tears. The meeting lasted a long time--well over an hour and a half. People were telling Jenny over and again how sick she was--she has no memory of the last week--and she finally got it. Really got it. She was shocked, and when I tell her the random stories of what transpired as they come up in my mind. She is still trying to disbelieve, but can't. 

Ultimately, the talk centered around decisional capacity, and how we would address this crisis should it arise again. There was no answer to that, but every one assured Jenny that we would never usurp her decisional authority while she is competent, and when incompetent would make whatever decision we were to make based on what, while she was lucid, enunciated would be her wishes.

Jenny after discussion with the girls,  agreed that she would not have guests at the house after 4:00 p.m. so that the family might be together--so that she could spend time with the kids.

This fucking emotional roller coaster. The outpouring of grief from friends and relatives as we thought she was to join the departed, was a lot to bear on top of my own grief. One person, begging to come see her, said to me when pleading to visit Jenny, "I missed my chance to see my mother when she was dying, and have never forgiven myself." Get a therapist. Another couple texted me in tandem, and then as a duet, proposing times and dates for visits. 8, 9, 10 texts later, and I was done with being polite. I was saying no 1000 different ways and still they poked and prodded. I realize that when I die it will be much more like Ebenezer Scrooge's lonely death in Stave IV of A Christmas Carol. I'll be glad for that for my relatives, who don't have to deal with the marauding hordes, seeking to assuage their own fear of death, their own sense of loss. Let me die and decrease the surplus population.

Entry 3     6:30 p.m.

Jenny's dear friend Kim flew in from Pennsylvania today. It was a surprise, and truth be told, the visit is rather a nice surprise-I remember Kim as one of the most thoughtful and kindest people Jenny has known. She was here earlier in the year and that was smooth. I learned of her coming when Kim texted me on Saturday. Other friends from Massachusetts and Los Angeles I was able to dissuade from coming right now. Of all the people that might have come, it is a relief it is Kim. 

I am nervous, though. I picked up Kim from the airport around 5 and brought her here. She and Jenny are downstairs now. I adore Kim, really. She is, as noted above, kind and smart. If memory serves, just lovely to be around. But I am so incredibly exhausted and simply drained, I am worried. We have such little time alone as a family these days, with the caregivers coming in every day, I crave the time of day when it is just us. When people come to visit, as Amy and Peter did a couple weeks ago, that down time sometimes never comes. I am just tired. Bone tired. Hopefully, she will be as aware and empathetic as I remember her to be.

Entry 4    7:05 p.m.

The appointment slated for today, in which the ball may have started rolling for hospice care was repurposed this morning. The palliative care doctor told Jenny this is the most remarkable recovery he has seen, and she is the most resilient--the toughest in fact--patient he has had in all his years. He had invited a PA to join him, I presume to introduce her to how he conducts the hospice talk, but instead, they ended up talking to Lazarus. 

I feel such relief, and such dread for the ongoing suffering. Jenny has thrown up twice today. But also, she walked all the way up the stairs, went out with her sisters without her walker, and has a blood pressure that is so normal it is more normal than the blood pressures measured even before she was diagnosed. She is waking in the middle of the night again from the pain--which she hadn't done in about 2 weeks--actually good news. She still has low energy, and sits on the couch mostly. And there are tiny remnants of confusion hiding in her eyes when in conversation. I don't know if it will emerge again, I pray it won't. It was the most terrifying things I have been through. It isn't the first or the last time I will likely see such delirium in someone, but I hope if it returns to Jenny, it is a long time from now.