To give you an idea of the state of things here at Chez Coffey, the original title for this posting was "Holy Shit, Am I Tired." But since that simultaneously both begins and ends the conversation and there's more to tell, I've opted for an equally direct title that presents me with the opportunity to cough up a series of random facts and whatevers.
But...holy shit, am I tired. So please forgive me if what follows is more disjointed than usual.
About that tiredness. No matter how much I sleep (and it's not all that much these days) or how well (and sleep is rarely sound) I am dragging my sorry ass through every day. Miranda and Dash have also been struggling to get adequate rest, with all of us slumbering fitfully and for shorter periods than we did before Karen's countdown clock began ticking so loudly. Karen, on the other hand, probably has a shot at the Sleeping Olympics should such a thing exist. She's logging somewhere between 12 to 14 hours a night and supplementing that with frequent and lengthy naps over the course of the day.
Despite all the sleep she is getting, Karen is utterly sapped for the majority of every day. It is shocking how quickly she has declined in the last week. The fatigue is the most obvious manifestation of her disease's progression--she is in the grip of crushing fatigue daily and it slaps you in the face with every unsteady shuffling stroll she makes from bedroom to kitchen and back again. Most of her day is spent in bed, with Karen rising chiefly to eat meals and to spend some small amount of time with us every evening.
There are indications of the leptomeningeal disease doing its dirty work beyond just the tiredness. Karen has trouble hearing, especially if there is background noise or a radio muddying up the audio environment. And most nights, during our increasingly more brief evening discussions, she'll ask if I hear some far off music or tone. I never do but I have to say, given the opportunity to select end-of-days symptoms to endure I think you could do a lot worse than ticking the box next to Randomly Experience Lovely Music.
If only that distant music were all she had to endure. Karen has begun drinking using both her hands to clutch her water glass since her hands tend to be numb and she now has trouble holding on to things. Her left foot has begun alternating between numb and achy and something in between, making her already troubled walking even more uncertain. She struggles for words at times and her short-term memory is spotty. And this morning the fallout from the whole brain radiation hit and most of her hair fell out in the shower. I cleaned big clumps of it from the drain before hosing myself off.
She and I both are experiencing recurring waves of delightful free-floating anxiety. We both are adept at recognizing it and white-knuckling our way through but it sure does make something like watching Fear the Walking Dead way more tense than it probably is--all that anxiety seizes on the lurking zombie uncertainty of that show and pumps up the dread to about three hundred times more than it could generate on its own.
I am now essentially on leave from work. While Karen and I initially entertained the thought that I could squeeze in just one more project before checking out to care for her, her deterioration has been breathtaking in terms of its acceleration. We had told my job that we thought I could make this last thing work but our reasoning was predicated on the old model of adapting to the new terrible normal that every new round of treatment introduced. But this time around, that new normal lasts for just a day, replaced the following morning with a newer, more terrible one. At this point, I don't feel comfortable leaving the house for more than the hour it takes for me to hit Crossfit. A multiple day work trip is clearly out of the question.
Right now, the biggest challenge we face is wrapping up all the paperwork. Karen and I had been very proactive getting things ready for the shift to hospice but we didn't count on having to contend with all sorts of insurance complications and other problems that have popped up in the aftermath of her dismissal from Wells Fargo. We hadn't anticipated that Karen's anchor leg and all it entailed would coincide with this bureaucratic clusterfuck. My days have been filled with notaries, long excruciating phone calls, a crazy assortment of byzantine forms, and all kinds of follow-up to make sure that the Karen and our family make it through these next several weeks (and beyond) without having to survive a series of financial neutron bombs on top of it.
It is, to be blunt, a terrible grind. Happily, the Meal Train we set up has been a godsend. Not having to worry about shopping for and preparing dinner every night is a huge relief to me...and to the family, which was getting pretty tired of my half-assed meal efforts propped up by too frequent takeout from too few restaurants. There is actual variety in our diet again and we look forward to seeing what is on our menu every evening--it is truly a highlight if indeed not the highlight of every day. Actually, that's not true: seeing the people bringing the food is the unquestioned highlight of our days. (And if all this has made piqued your curiosity you can check out our Meal Train right here).
This afternoon I began the hospice intake procedure. Tomorrow a nurse will visit to determine our needs. Once we get the official sign-off from Dr. Sherman on Friday, we will officially commence hospice and then the end will be a whole lot nigh-er than it's ever been. While we are surprised by how quickly things are progressing, we are also grateful. No one wants a drawn-out, torturous end. And it isn't looking like it's going to go that way. We'd cheer about that if we weren't all so terribly sad.
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