She kept us on our toes for six weeks, clocking an impressive array of medical emergencies one after the other. Who knew that heart failure could be so stunning, and tragic, and poignant. I got front row seats to a thoracentesis procedure, where the fluid was sucked out of her lungs through a long needle. I got to sit with the MRI technician at 3 am as he isolated the network of carotid arteries on the screen, searching for the occlusion. I got a crash course in thyroid function and how it slowly but steadily weakened one system after another, the signs flashing by without me recognizing their urgency except in hindsight. She racked up to eleven specialists/teams coordinating her care by the end, with visits nearly every hour ’round the clock.
The oncologist said the cancer was already growing for around 10 years – in other words an indolent or low-risk biology. It was just one of the problems I watched her ignore when I found out about it nearly a year ago. There was no convincing her, as she discontinued all medical visits and her one medication, in what I think is her way of going away quietly without being a burden to anyone. She thought she was being kind, thinking quietly of others in her unobtrusive way as she had done all of her life. Except things don’t work that way. When her dementia finally set in enough to allow me to take charge, I pushed aggressively for the medical visits and tests. By then she trusted me for everything. But all the medical advances at the hands of an incredibly coordinated care team at Mount Sinai Hospital wasn’t enough. The descent into progressive systems failure isn’t painless and, in her case, accelerated a dementia that wouldn’t have taken her as quickly if she’d just continued her healthcare regimen. None of these stick around in her memory because the neurons and pathways have deteriorated, and there’s little energy to spare past the increasing chronic pains. Meanwhile, people who love you watch helplessly and run around like chickens with heads cut off, scrambling to make things better.
It’s a raw emotional landscape, uphill in every direction with few high ground. You go from berating yourself for not doing enough, to resenting her for not taking care of herself. In the midst of all the bad-to-worse news you get one small breakthrough, and then the universe takes that away. And it cycles around again. So you take it out on everyone else who love you while retreating from friends and others who try to reach out. And you feel horrible through all of it. But you do it all again the next day.
I know all my wants are selfish – she has a right to her decisions and the pain even if she didn’t ask for it. She likely knew what she was doing.
I wish I knew if she understood any of what happened these six weeks, or still recognized how much we love her, even after her brain finally let the fading memories go, including who I was.
I wish I can say thank you or buy chocolates for all the strangers or colleagues or friends who braved that miserable fog themselves, and are giving a guiding hand or are simply there through the fiber optics.
It’s done now, after nearly six weeks of intense days with her. It was sudden and shocking and sad.
Til next time, Mom. I love you both and know you’re together again..