For those who aren’t keeping up with the accounting here, I’m only writing Work From Home What the Fuck on weekdays. Weekends are normal weekends so while it’s still complete chaos with the kids, and there’s still time-shifted work to be done, this open diary is really about what’s going on when I’m sitting, or standing, at my brand new home office desk.
It’s really fucking difficult to focus not knowing what’s going on with my dad.
The issue is a combination of realities converging that there’s nothing anyone can do about. The normal communication systems that hospitals typically use to keep families informed about patients are not set up for this kind of remote update scenario so the entire process is falling apart. Privacy laws and hospital procedures can make things complex to begin with but then under the strain of everything having to be done remote, and the increased patient load, and so on, the usual systems become easily overwhelmed.
Furthermore, the staffs themselves are being stretched thin and overworked at this point so even if there was a better communication system in place it might still fail under the weight of lack of functional manpower at this point. Staff has to prioritize treatment on an increasing number of patients. Those patients all have far more issues to look after with this disease than a normal patient would have. So they just don’t have as much time to put in to the additional communications even if there was a channel for it.
Finally, and this cannot be stressed enough, is we just don’t know enough about the disease yet to really understand what’s happening. We don’t know what treatments should be used so it’s a lot of focus on the symptoms and not necessarily the underlying disease, but even then, there’s a lot of educated guessing going on and not a lot of concrete answers even when you can get someone to tell you what’s going on with your loved one. This means a lot of the conversations come down to “they’re alive, they’re comfortable, that’s all we know and have time to tell you.”
Meanwhile, he’s going through this all alone. Everything is on lockdown so there’s no visitors. Not that some of the family can visit anyhow because of our own underlying health conditions, myself included, but for those who could be bedside for him they aren’t allowed. Hospitals have to prioritize their own communication needs so things like patient access to WiFi then becomes limited and cell service becomes strained as more people try to get on-network. Not that he could necessarily use a personal device sedated in the ICU at the moment anyhow, but when he is moved chances are the ability to keep him company is going to be strained as well.
While where I am in Westchester County has roughly double the number of confirmed cases as the next closest county and a higher death toll than anywhere else in the US at the moment he’s fortunate that were he is in Jersey isn’t as hard hit yet. It’s frightening hearing about the shortages of everything at local hospitals right now. Hand sewn facemasks? Seriously. This is where we’re at that staff are reusing personal protective equipment and having to fashion gear out of household items to keep themselves safe? There are freezer trucks being rolled into parking lots because the morgues are full. Triage tents are being setup in parking lots because there isn’t ER space in some places. Hospitals are talking about the what-ifs of having DNR policy that supersedes patient and family directives knowing full well they are going to run out of PEEs, the are going to run out of Vents and crash carts, the are going to run out of beds, they are going to run out of support staff, and so on.
Capitalism at it’s finest means waiting for companies to voluntarily shift production to needed equipment and then charging hospitals for the equipment. Of course, hospitals are for-profit too so they in turn are charging dying patients families too. Large parts of the population are going to go bankrupt trying to survive this and some percentage of them will die leaving their grieving families the burden of not only the loss of life but debilitating debt too. Debt for care that was, in fact, substandard because the necessary equipment wasn’t available to everyone, there wasn’t staff enough available for everyone, and so on.
I would feel angry about this even without it directly affecting me. I’ve been bitching for several weeks now about how awful this is being handled across the board. Before my padawan and I got sick. Before my dad got sick. Before anyone was being given stay-at-home orders other than proactive companies like mine who were watching out for us up front.
If you think it sucks being stuck at home for the time being imagine for a moment what it must be like for those sick in the hospital going through this completely alone because family cannot be there, because there is barely enough staff to come around and even attend to you at the normal intervals. To have to hear all the chaos happening around you, knowing people are dying down the hall from the same thing that’s got you hooked up to a ventilator that you’re still struggling to breath while using. Imagine how it’s got to feel then and maybe you’re having to skip your usual bar night or trip to the gym might not be so bad after all. Not to minimize being furloughed or laid off but even that’s gotta be a little better than potentially dying alone in an overcrowded hospital where they didn’t even try to resuscitate you because they couldn’t save everyone.
My biggest fear now is my dad had contact with people before being diagnosed himself because he was out running erans for everyone that couldn’t always do it themselves. He prioritized trying to keep older and sick family members away from the grocery store and pharmacy and so on despite himself not being a spring chicken and likely exposed himself to it. The issue is the virus remains asymptomatic for such a long time in carriers it’s difficult to really gauge the full extent of exposure he might have had with others including those he was trying to help by going out for them.
This is why all of these shelter-in-place things are so important … it’s entirely too easy to be a vector and not realize it until it’s too late. And, while it’s just now beginning to show effects in New York City what’s happening here is a result of exposures that date back as far as two weeks ago by best estimates. It’s going to hit other cities too because the shut down process hasn’t been universal and because the necessary fear fo the virus really isn’t instilled in people. There’s entirely too much ‘well, it’s not not affecting me or anyone I know right now it must not be a problem.’ By the time it does affect someone you know it’ll be too late. It probably already is. That’s why it feels so apocalyptic here sometimes.
Anyway, like I said, exceedingly difficult to concentrate knowing he’s laying there alone and I can’t even video chat with him to let the padawan tell pepe to get better as a way to keep him company and remind him he’s got a supporting family here awaiting his recovery. It’s even more frustrating trying to figure out how to explain to the padawan what’s going on. I mean they know pepe is sick, like how dad and bear were sick, only worse, but it’s not like this is something easy to really get adults to grasp forget about toddlers.
Busted out the iPod today and just put the “prog” category on shuffle and skipped around a lot. I know, it’s sacrilege to listen to concept albums out of order. I know it’s even stranger to consider that I’m using shuffle on prog today when for the better part of the last few week’s I’d been listening mostly to full albums top-to-bottom. I just felt like listening to certain things today and this was the easiest way to get to them I guess.
Yes — I went with my dad to see them on the Union tour when they played as a theatre in the round and had both drummers. It was so intense and such a great concert memory with my dad.
Dream Theatre — he went with me to a number of DT shows over the years and they were always great experiences, especially during the college years when he’d roadtrip with my friends and I all over new england for them
Rush — Of course I listened to Rush, duh. Surprisingly never saw them with my dad but man did we listen to a LOT of Rush together over the years.
Porcupine Tree — Never got to see Ptree with my dad but did get to introduce him to Steven Wilson once and that was neat. Got him a bunch of autographed stuff over the years but I always got the impression he was more into listening than collecting the memorabilia.
King Crimson — I remember my dad being pretty excited to introduce me to the sounds of King Crimson when he pulled out the copy of “In the court of…” the artwork alone was enough to inspire hours long conversation about how amazing the band was.
Pink Floyd — I actually think I did more to introduce my dad to the wonders of Floyd than vice versa. Surprisingly, I think we probably listened together more to other band’s covers of Floyd than Floyd themselves which is fine, the music is awesome either way, but I listened to all originals today.
Kansas — Carry on and a couple of the other hits were staples in our regular listening rotation, so it was inevitable that I’d skip on over to them today too.