Chapter 1,000 in The Mama Saga
When I left the house to have an early morning mammogram, I checked in and she was lucid and fine. When her aide arrived half an hour later, The Mama was lucid and fine. She was fine when I came home. She was fine until sometime around noon when the aide sent my daughter up with the message that The Mama was having a stroke. My daughter clearly thought one of them was being dramatic (both are maybe prone to that, and since TM has both dementia and 50+ years of MS, we can’t always tell what’s going on). But the aide, who is wise and has seen a few things, was correct. So I stuck an uncoated aspirin under TM’s tongue and called an ambulance. Dithered a bit about whether to have her taken to the Level 1 Trauma ED, where I have had a number of pretty non-happy experiences that went on for hours and hours, or the Level 2 to which I usually take her because it’s fast, nicer, and reliable. Went for Level 1, partially because that’s the hospital that has a floor dedicated to the Hospice outfit that we’ve had good experience with. It turns out that being a critical case in a Level 1 is an immeasurably different experience than being a mere kidney stone or busted something or other. Other than to say that from beginning to discharge, every human we had contact with was operating at peak humanity and peak competence, I’ll spare you the details. What was interesting was The Mama. First, in case you ever wondered, no matter how entangled/close/intimate you might be with your loved one, when they super-focus on you pleadingly in the ED and repeat “NO, NO, NO…” over and over, you will probably not know what they are saying “no” to. “Don’t let me die,” “don’t let them take me away from you for a CT scan,” “I am damn well NOT having a stroke,” and “let me go; no intervention” are all among the possibilities, and aphasia pretty likely will make it impossible, absent a Vulcan mind-meld, for you to tell what you are being asked to do or not do. This is the point where I offer a public service suggestion: you cannot possibly imagine how important it will be to have a legal directive and a POA with you, because the ED is definitely not the place to figure out that stuff, let alone have to make guesses or judgement calls. Because no matter how good you are in an emergency, you will be dumb enough to ask a neurologist you will later find out is an MD/PhD whether he has any experience with MS, and that is no predictor for good decision-making.
Back to The Mama. It was a monster arterial clot. Since, unlike invasive interventions, are on the table, I okayed TPA but no transfusions should it cause a bleed. It worked like whoever invented it dreamt it would. She was better 15 minutes after they administered it. Which meant we were back to her normal cycle of mild aphasia followed by periods of clear speech, followed by milder aphasia-Lather, Rinse, Repeat. There were three interesting bits: the first was when she spent 20 labored minutes trying to get out a sentence that finally formed into “I don’t want anything to be wrong with me that will affect anyone else!” Since this is about 8 hours after she’s been admitted and I am several flavors of gonzo-tired/wired, my unspoken immediate response to that was “too late for that one, Mama!’ But I did what you do and kissed her on the forehead and said “I know. It’s okay.” The second happened shortly after that. She’s gotten super-sensitive to discomfort as the dementia has progressed. She has a particular animus for BP cuffs and pretty much always looks at me like I am feeding her to a dragon when a nurse pumps the cuff. Having spent much of the day fretting at it, she suddenly figured out that she could slip it off, so she did. And then spend a good 2 minutes giggling maniacally. That was both hilarious and disconcerting. I was glad my daughter was there to see it. Otherwise the whole family would have accused me of hyperbole later… And the third interesting/revealing/weird moment was during one of the every-20-minutes neuro-exams—the verbal part. It went sort of like this:
Nurse: What’s your name?
TM (giggling and twinkling her eyes): Devon.
Nurse: Do you know where we are?
TM (still twinkling): Devon
Nurse: What’s your birthday?
TM (twinkling and bobbing her head happily): Devon
Nurse (with infinite patience): Do you know why you’re here?
TM (serious now): Devon
Nurse (giving up, looking at me quizzically): Well, that was interesting.
My Daughter (looking sympathetically at me, talking to the Nurse): You have no idea.
Me: blank, blurry “save me” stare at the ceiling, then nod to nurse, who then seamlessly moves on to the physical part of the exam and pretends she didn’t just witness that. I figure that the nurses in the Neuro-ICU probably see lots of weird interactions.
So here we are back home and back to what vaguely passes for normal. The world inside my house certainly runs in extremes. On the one hand, I started sobbing while carrying a basket of laundry upstairs this morning. Not a big deal—I suspect this will happen off and on for a few days. But my 19-month-old grand-daughter, who lives here and was behind the gate in her parents’ living room about 20 feet away (her parents were talking about job hunting and didn’t hear me—I wasn’t very loud) heard me and came over to the gate, leaned her head against it and started chanting “Oma, Oma, Oma!” until I took a nice deep breath and told her I was okay. Then she went back to stepping on all her noisiest toys while her parents were talking. Like a toddler should.