Just when I was planning my next update while I ironed Justin's white coat and cleaned some stuff up after we got home from the hospital where is mom is, the phone rang.
No one but telemarketers and our parents have our home phone number.
So, original thought: We're home. Justin is doing his homework to prepare for his first day of his pediatric outpatient rotation--orientation in the morning and the pediatric cardiology ward in the afternoon (can you imagine anything more sad? besides ped's oncology?)--and I'm doing what I can to help him, which of course is just be housewife-ish. Today we've spent as much time as he can stand talking about Do Not Resuscitate (DNR) and Advanced Healthcare Directives. As far as I gather, Mark is Toni's power of attorney and they have had long discussions about what she would want should such a situation arise. (Yes, I am ever so slightly curious as to whether these discussions took place before all the accidents or during the more lucid moments between the year-round Easter greetings.) She does not have a DNR--which means doctors should use extraordinary measures to keep her alive. Like if her heart were to suddenly fail they should restart it. However, if she is going to have to breathe on a vent or be fed with a feeding tube for the rest of her life then she does not want that. This is what I understand to be true, based on Justin's relaying of information to me. (How does a daughter-in-law discuss these things with anyone but her husband?)
But as far as I have observed in our nearly five years of marriage her quality of life has deteriorated so far that I have to wonder if she could have this conversation today what her preference would be. I mean, if a resuscitation will bring her only as far back to life as she was on, say Monday when she saw two doctors who couldn't explain why on her own she can't walk, eat, read, write... etc., is that what she'd want? There are moments when the answer is so clear to me. We put our pets to sleep when they start to suffer, why do we force humans to soldier on as if they were going to get much further than where they already are? But then I think of the times she smiles at Justin or Mark, or makes a joke and grins because she knows she's made us laugh and I can sort of see why they would want to keep her around.
It's so much harder, I'll bet, to let go of someone you've loved for so long. So much easier to see that that person is still fully present, somewhere inside the shell of the body--present and watching and loving and responding in the way that she can. How could you decide to stop that goofy grin, even if you do have to help her in and out of her wheelchair throughout the day?
Then Mark called. On our house phone. Justin said the words, "oh my God," "I'm sorry, Mark," and "ICU."
Stomach dropping words.
I stood in the doorway of his office and watched him until he waved his fingers at me, and then I moved away quietly. Apparently her blood gas level dropped back down to 60--which is where it was when we brought her into the hospital. It's supposed to be in the 90s, I think. Mark's mom, who takes care of Toni despite her age, her hip surgery and now the use of an oxygen tank has better blood gas levels than that.
Driving back up now is not an option, but Mark is back at the hospital and she is getting shuttled from room to room (apparently not in the ICU, though she was moved for a bit... he just called again...). Tomorrow is a necessary day for Justin to attend class, but Tuesday there is lecture and his usual primary care physician clinic, so maybe we'll go up again, depending on the status of things. Someone can take notes for him.
Justin and I filled out Advanced Directives, chose our people, are the people for our friend. After Terry Schiavo most of the nation gave at least a passing thought to their passing lifetime. I am Justin's first person; he is mine.
But what on earth would we do?
(The phone rings again...)
"OK. OK good." This I can handle.
What do I want? I think of the number of times Justin has been near death, and how glad I am to have him here and functioning and am glad they did whatever they did to keep him going when he lost his foot and when he has that bone infection and when and when and when....
Maybe I'd rather die than live like Toni, but maybe not. She was proud to see him graduate from college, to get married, to be in medical school. When I was taking care of Justin during the bone infection he was less a burden than he was my beloved. I want him to live forever.
They're discussing DNR stuff again, it's not so great. "Even a little CPR... I agree... Yeah..."
As the daughter-in-law who never got to meet the real Toni, it's easy for me to ask whether extraordinary efforts to keep the status quo are worth it. But if it were me.... if I were the patient or the wife or the daughter of the patient...
I really don't know what I would do. I suppose this is a conversation we should all have with our next of kin. I suppose this is something I should really consider and write about and maybe even make clear and legal however one does that.
When someone this close is dying or even close... it's like the dying is everywhere.
Quick update: the doctor's had the DNR conversation with Mark. Basically, they're not going to go above and beyond to save her life, they'll do the minimal. He made it clear to them that she doesn't want to continue on the way she is "living." There won't be machines to breathe for her. There won't be machines to feed her. There could be CPR, but I don't think there will be shocks to restart her heart if it stops.
What a strange phrase. Her heart is in Justin's insistence on a certain brand of olive oil because that's what she used to cook with, in Mark's description of how she made risotto, in everyone's memory (but mine) of a feisty woman.
Justin and I don't completely understand what Mark's explanation of the situation is, but she's in some mid-level between ICU and the Respiratory Care Unit; she's being monitored closely.
I think either way we're going up on Monday night or Tuesday morning.
Sweet Jesus, what's a girl to do?
Justin and I just contemplated Ambien again tonight. How does a boy sleep when he's just told his stepfather that he agrees using "heroic" measures to keep his mother alive is a bad idea? But he has to be up in six and a half hours to go to school. We voted for sleep.
"But what if something bad happens?" he said.
"If anything that bad happens that we're driving to LA again, I'm calling someone else to drive us. We won't be in any condition to drive anyway."
"Yeah. You're right."
Good night folks. Sleep well and tell someone you love them.