So much has changed in just the four days since I last updated this blog.
Karen has not had anything more than a few bites of food and a few sips of water since last Tuesday the 13th--for all intents and purposes she has stopped eating and drinking. She joined us for dinner (albeit she barely ate a thing) on Wednesday the 13th and since then she has not left her bed except to use the bathroom just a couple of times.
It all feels very End of Days. As I write this Karen is deeply asleep at around 12:30 PM after a kinda hellish night and I honestly don't know if she will wake and be able to interact with us ever again. We're just waiting to see. In a couple of hours she will be due for meds again and that usually stirs her from her slumber. I'm clearly no expert, but I'd guess there's a 50/50 chance she'll just keep sleeping right till the end.
Karen's pain has been an infuriatingly moving target. We have struggled to keep it at bay. Her dosages and dosage frequencies keep getting increased. With every increase we enjoy a day or two of substantial pain relief invariably followed by another day or so of waves of agony throughout her body, i.e. the pain is no longer localized in one or two spots like her head.
Part of the struggle has been getting her into a physically comfortable position. We have tried to maintain as normal a life as possible but last Thursday we had hospice deliver a hospital bed so that we can better find a posture that relieves her of pain and discomfort. Here's a big hearty THANK YOU to my videogaming career and the peerless Tetris skills it nurtured and developed which allowed me to reconfigure the bedroom just enough to allow her bed to fit next to mine.
And let me just share an aside as to how awful it is after 26 years of living together to refer to that sprawling, suddenly far too empty king bed as "mine" for the first time ever.
Most of the time Karen is sound asleep, her face slack and sagging in a way that I have never seen before. She trembles and jumps and jolts from a constant barrage of neurological misfires that at times are strong enough to briefly jar her awake. She almost immediately drifts off again, her brow furrowed with some unknowable worry. Her skin is dry and her arms are sleeved in delicate wrinkles like crepe paper. When she is awake, she generally is incapable of carrying on a conversation about much of anything unless it is to ask for pain meds. The pain is the only thing that reliably cuts through the fog these days.
But it's not limited just to physical pain. And that's not necessarily a bad thing.
Last night, Miranda and I were in my room with Karen and she was, as per the last few days, lost in the drugs and the ravages of her disease. She spoke but instead of truly talking she was only muttering "yeah" and "okay" over and over. It was too much for Miranda and she began to cry. I sat beside her and embraced her while she clutched her mother's hand. Through her tears, Miranda told Karen how much she loved her, how she knew she had always enjoyed her mother's unconditional support, and how much she was going to miss her. This was her goodbye (I'd said mine the night before). That cut through the fog like a knife and suddenly Karen was back. Her hands trembling and uncertain, Karen held Miranda's hand with one of her own and clumsily stroked her daughter's arm with the other. "I'm so sorry you have to go through this," she said more than once. It was the most she had spoken in 24 hours. She was, for about 85 seconds, completely present for her daughter. Then she slipped away again. My throat ached for about 20 minutes after thanks to how painfully choked up I was through all this.
Around 5AM Karen woke me to use the toilet. She was agitated and stressed but actually pretty communicative. Since she was up and it was roughly time, I gave her all her meds including her new big dose of methadone. I had to add the jumbo dose of dilaudid to that shortly after in an effort to dull the pain. One hours later she woke me in torment begging for more drugs. I checked with hospice and while they wanted me to wait until 7AM to give her another (but still early) dose of dilaudid I figured "Fuck it, it's close enough and she's in agony" and gave her another big syringe full of dilaudid. That did the trick and she slipped back into sleep.
She's been out cold since then. Her breathing is irregular and kind of shallow. From my very limited experience with this sort of thing--and I'd again like to remind you that I'm no expert so I could be way off on this--I imagine we are within days of the end of this nightmare. Which probably means we are within days of the start of a whole new nightmare.
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