Jill "xtingu" Knapp

Traveling musician. Singer. Road warrior in bursts. Dork. Easy to spot. Gauche eyeshadow fan. Unreasonably happy.

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I wrote this maybe 10 days ago.

I forget where I left off, but I was living full-time in NJ at my folks' place from 2/8 to 2/28*.  Most of that time I was away from Matt because he was working in Maryland, music directing a show.  It was a really hard three weeks.

(*which does not include the 5 then 6 days in January we were up there, too.)


One of those February weeks my dad was in the hospital, so with my Mom's routine disrupted she was extra spacey. Once Dad came home, things slowly returned to normal, but Dad was really struggling with the fact that for the first time he wasn't just *bing!* back to normal. He is not used to feeling weak and needing help.

Anyway, Dad had a bowel obstruction, and thankfully the surgical fix didn't require a bowel resection-- instead there was just a weird piece of string (made out of a strand of scar tissue) that strangulated his guts.

Didja ever cut a raw, boneless chicken breast and there's that weird white tendony-gristly thing that kinda goes through a 3rd of it?  It looked like that.  So the doc snipped it, and in one second my dad went from Guy In Agony Who Could Not Breathe And Wanted To Die to WHEW SWEET RELIEF.  They waited six days before they operated, hoping the obstruction would just kinda clear itself, but after Day 6 they realized they needed to get in there. Three teeny laparascopic incisions and a snip later, and he was fixed up. They watched him for 2 more days and then released him.  

(Side note to Jeremy Moskowitz  and Matt Lichtenwalner : Remember that time in either 2006 or 2009 (I can't remember) when we went for Indian food someplace on Kirkwood Highway and I had to go sit in the car in the middle of the meal, and when you came out I was inconsolably wailing and screaming bloody murder in the back of the car, and you guys took me to the hospital? That was a bowel obstruction. Dad had the same thing. We're built weird, I guess.)

Problem is that while Dad was in the hospital, they stuck a naso-gastric tube down into his gut and pumped his stomach for 6 solid days, to relieve the pressure building behind the obstruction in hopes it would clear itself. During this time he wasn't even allowed to have ice chips, let alone any food, broth, water,  nada.  After the surgery they continued to pump his stomach so he could heal up, so for a grand total of 8 days he didn't move, eat, or drink anything.  He was a withered shell of a guy.  We were afraid he'd never regain his strength or confidence after that.  Once they sent him home, it took him about two weeks of constant care by yours truly, but by February 28th he was back to about 87% strength, which was enough for him to tell me I could go home, so I could do a gig on the 29th.  (Gig was great. More on that later.)

Mom continues to be on Planet Mom. Her dementia is fascinating, honestly. If you talk to her, you would have no idea anything is wrong. She is funny, normal, on-task, quick-witted, well-spoken, patient, friendly, sweet, knows all of her stories and recipes, all that.  It's just that 5 minutes later she won't remember that you had that conversation.  So she'll go to a doctor and will sign in perfectly, will be friendly, will make eye contact, and will tell people things that sound totally reasonable... and 50% of the time she's right.  But while my dad was in the hospital I had to take her to a GI appointment, and she told her GI doctor that she was the one who was in the hospital for a week... and the GI doctor dutifully wrote it down in her chart, because it sounded totally convincing. I had to gently say, "Mom, you weren't in the hospital; Dad was."

"What now?"

"Dad was the one in the hospital, not you. He's still in there now with a bowel obstruction."

"What? Did I say I was in the hospital?

"Yep, just now."

"Was I in the hospital?"

"Nope. I mean, you visited Dad, but you weren't the one being treated."

"Oh. Hmm. ((chuckle)) Well, that's old age I guess."

The GI doc was puzzled listening to us have this exchange. On the way out I popped my head into his office and asked him to please make a note in her chart that she's got early-stage dementia, and to please make sure someone else is in the examination room with her, because otherwise we can't be sure if she'll be giving accurate information. And also, she won't remember any instructions you give her.

Fast forward three weeks later, where we had a follow-up appointment with the same GI doctor. He now sees in her chart the note he wrote-- "patient has early stage dementia."  I am in the examination room with her again.  As he prescribes her antibiotics for something, he looks at her and says loudly, "Now don't forget that you have to take these for 10 days. Don't forget, now!"

Right. Because those are the magic words that make dementia patients miraculously remember shit.  Fucking idiot.

(And no, that wasn't his way of making sure I was paying attention. Trust me on this one. He just doesn't get it.)

She's like a computer with a bad hard drive. If something was written to hard drive before 2017, she remembers it perfectly. Post 2017, it gets glitchy. Starting around Thanksgiving 2019, it's RAM only.  


Anyway. While I was up there, I did not think I would ever be able to come back to DE.  I had several private, epic, Oscar-worthy meltdowns... and in the twitchy aftermath of one of them, my brother picked up on the fact that I wasn't doing so well and he suggested that I go home to DE for one night, sleep in my own bed, attend a Sunday rehearsal that I didn't think I'd be able to attend, and then head back up to NJ afterwards, and he'd watch my folks for that time.  Those were a sweeeeeet 20 hours, I'm not gonna lie. It's amazing how much one can recharge in a short amount of time. Everyone at rehearsal was so, so, SO lovely and supportive, and genuinely asking not only how my folks were doing, but how I was doing. This was weird for me... I've never really been the one who needed a supportive hug; I'm the one who gives them. I didn't even know that many people even knew about my parental situation. I felt really loved and cared for, by people I didn't really think ever gave me much thought. 

While I was in NJ, I contacted 41 home health agencies to lend my folks a hand... and only TWO serve Warren County (the ass-end of cow-town NJ where they live). One agency had caregivers that live in Newark, which is about an hour away from my parents. Generally speaking, Newark folks don't understand country life, they don't understand deer and bears and how your nearest neighbor is a cow a few acres away. They also don't drive generally, so when we tried one caregiver we had to pay a $68 Uber ride each way for them. How would they be able to give my parents a hand if they can't even drive?  So they weren't a good fit.  But the other agency, Home Instead Senior Care, is based about 8 miles from my folks, and their caregivers live in the area. They understand the ways of the cows. After some shuffling and scheduling, we now officially have Wendy the caregiver spending 3 days a week with my mom for 4 hours at a clip. This basically frees up my Dad to turn his brain off so he can putter in the garage, go have lunch with the guys, snooze, pay bills, whatever. Wendy makes sure my mom is entertained, fed, takes her meds, helps with meal prep, can take her to get her nails/hair done, take her to doctor appointments, etc.  It's a huge relief.  Of course now with all of the COVID-19 lockdowns, I'm not sure how long this will last... but I'm comforted that at least for now there's an extra set of competent eyes making sure she (and Dad) aren't experiencing any symptoms. 


Now we're home. I'm writing this part on 3/15/20 now.

So anyway, I've been home since March, and I've mostly been hermiting. Like, pretty much staying in my PJs, leaving the house only when absolutely necessary. I've been doing a decent amount of voiceover work, and 

On Friday March 13th, Matt's Ramones band had (53rd & 3rd) a gig at Oddity Bar, which was comfortingly bleachy, and not very well-attended due in part to collective nerves, and the Delaware State of Emergency which didn't make ir clear if folks should stay home. We were all OK with the attendance, honestly. The 25-ish folks who did attend really wanted to be there, and we all amused ourselves coming up with silly, inventive ways to greet each other without shaking hands or elbow bumping. Everyone tipped the bar-staff very well, knowing they had it rough. Some of us even ate at the Chinese place next door and overtipped there, too. 

In other news, the stores have been busy but not nuts, and fairly well-stocked. They were out of bleach, hand sanitizer,  and rubbing alcohol, and low on bread, but nothing we couldn't work around. (Besides, we already had bleach and rubbing alcohol on hand Because Adult, and also Because Burning Man.)  We feel prepared for a week or two (or  of isolation if it comes to that.

I bleach-washed the bejeezus out of the kitchen floor and the entire master bathroom, so I feel like I've accomplished something. I'm hoping my burning lungs are from the bleach and not a symptom of COVID-19. 

Anyhoo, there's more to tell, but this is already hella long. 

As a reward for reading this long, blathery post, please enjoy this delightful thing by making with the clicky (fixed link!):

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3/16 '20 9 Comments
I can’t imagine your stress. I’m glad you’re back at your home.
Thanks, m'dear. Very glad to be back home... though the guilt is pretty overwhelming at times. Trying to just stay present and breathe, y'know? 💗

Love to you guys.
Glad your back and rebuilding your spoon inventory. Offer still stands, if needed. Don't be a martyr.
Super glad Dad's back on track and that Mom's got additional help so he can get some peaceful Dad time. Also, that Wendy knows the ways of the cows, because yeah.

Most importantly, I'm glad you've got your life back. When this pandemic is over, I'm very much looking forward to catching up.

Love you and love to the folks.
Everything is beautiful, isn’t it?
I can see Derren Brown, but was there a particular tweet you wanted to share?
Weird-- not sure why the link isn't working. When I edit the post it's fine, but once I post the post, it just takes you to Derren's profile and not the tweet.

Anyway, I think I was just able to fix it now.