in the past 24 hours:

—i learned my mom, who is basically all i have in the world, has Stage IV pancreatic cancer

—called my dad to let him know & heard weird noises in the background. “where ARE you?!”

he’s been in ICU with covid for a week and no one even told me
just talked to Dad again. I asked him how he’s feeling about Trump now — having voted for him — lying in his bed in the ICU in Florida

him:”I don’t know if he’s stupid or lying ...when I heard him say it’s not that bad ...are you kidding, I wouldn’t wish this on my worst enemy!”
my estranged stepmom (who is younger than me) called me to make up & read me bible passages & apologize for not telling me.

her: “we did everything you could possibly do to keep from getting the disease” (except for not going to visit her parents in rural Brazil)
mom refuses to go to the Mayo Clinic cuz she had a neighbor 40 years ago who went there and they removed and cleaned all her organs before replacing them in her body

me: “Mom! I went to the Mayo Clinic for my migraines and they didn’t even remove any of my organs!”
turns out both my mom and sister knew my dad was in the ICU and decided not to tell me cuz they didn’t think i could take that much terrifying news all at once 🤔

(i mean ... what if he had died and no one had even told me he had covid (?) what a fun social experiment!)
delusional optimism: “maybe i’ll use this time to write and lose weight”
i loathe every person on this flight

also: sobbing under your face shield fogs it up to the point you can’t see and other people comment on it and turns into a hilarious bit!
dad’s millennial wife posting videos of him getting out of the hospital
dad has never been so emotionally available as when he was trapped in the ICU, no visitors for 10 days, watching his ward-mates code right and left. it’s been a high water mark in our relationship tbh
mom is anxious about what the biopsy will show.

me: “how could it possibly get worse?!”

mom: “well...what if it’s Stage IV?”

(we already know it’s Stage IV. i realize no one told her, trying to keep her positive. i get so nauseous i leave the room & bend over, deep breaths)
“she’s a good kid.”

— my dad, over and over, regarding his wife, who is literally the same age as his kids
“well, at least you’ve finally reached your goal weight.”
thanks to all who told me to go to the ER last night. i fractured my right elbow on top of everything else. have to see the orthopedist and get a cast tomorrow (i’m in a splint). when the doc told me i won’t be able to type i just lost it. (this tweet typed with my left thumb) https://twitter.com/julie_bush/status/1317569299939295232
my sister can’t believe this happened considering my nephew has used this bathroom for years with no problem. but i think that the profound disruption & upset of having both your parents being very sick is bound to come out somehow—in my case via accident in the most benign place
having one handed phone sex (cuz of the broken arm) next to my mom’s hospital bed. never ever quit yall
hope literally every person i encounter is enjoying my uncontrollable weeping!
“there’s no hope.” (big smile)

— my personal doctor, in a refreshing moment of honesty for a doctor
South Carolina’s near constant chorus of cicadas and insects is doing nothing to distract me from the ever-present drone of eternity
treating myself to an oxycodone. I’ve earned it!

me to the orthopedic surgeon this morning: “if a fractured elbow isn’t the time for an oxycodone script, when the hell is the time?!”
my sister’s favorite method of communication is post-it
my mom went from driving carpool and painting cabinets to lying in the hospital on morphine in 2 weeks
i talked to one of my mom’s best friends Donna. she said she already made her own celebration of life video herself so her “scoundrel sons won’t get the last word”
Dad is still voting for Trump despite the fact that he almost killed him. “With these taxes, I’ve got no choice!”
my cast goes all the way from my fingers to my armpit ... hooray! it doesn’t itch night and day at all
my sister struck this faustian bargain long ago where my mom offered to be her nanny (literally taking unpaid vacation days off work so she could enable my sister & brother-in-law’s constant business trips), eventually moving into their huge bland suburban house this year to help
mom sold her house in August & her symptoms emerged a month after closing. she moved into my sister’s house & put most of her stuff in storage, planning to buy a home close to my sister’s house. then she got pancreatic cancer (diagnosed 2+ weeks ago). so i had to come here too
my sister hasn’t taken any time off from her job as a “Global Solutions Leader” at a big intl consulting firm. I have done 90% of the caregiving, and then my sister expected me to also take over my mom’s nanny duties. when i strongly asserted my boundaries, I felt like a monster
despite the fact my sis & her husband are both in their home offices 12 hours a day ... somehow i’m supposed to put my career on hold and fly cross country to this awful suburban wasteland to serve as the free servant their narcissism & entitlement have come to expect from my mom
so there was a miscommunication at the hospital today, where the nurse thought they were planning to send her to “rehab” after the hospital (which is basically Hospital Halfway House). i told them that’s not what we want, with covid, & 2 daughters at home who can care for her
i just got home and my sister said “i mean, maybe that’s what i want” (about sending her to rehab). and her husband chimed in to support the idea. and i realized w sinking feeling that now that they’ve used her up they just see her as an impediment to their controlled family life
there’s been this feeling during this episode that my sister thinks she makes the rules since we’re all under her roof. aka my sister is in charge of my mom (she thinks) because it is such an inconvenience to her family (who have used mom as a servant for more than a decade)
and i seriously want to punch the both of them in their horrible corporate middle manager faces. i told my sister about how awful the rehabs our uncle was in post hospital and she said “well maybe they couldn’t afford a better option.”
so i feel helpless & alone. it’s not like i can just bring mom out to california (esp with covid & she’s in no condition to fly). so it’s like we’re both trapped here in this place where we’ve lost our utility to these people
she’s lost utility cuz she can’t nanny and cook for them anymore. i don’t have utility to them cuz i pushed back hard on the expectation that i’m supposed to drive the kids to tennis & riding etc *when i’m here to take care of my mother who has the deadliest cancer there is*
we were politely disagreeing about this rehab thing just now and i said “why don’t you just ask them about it at the hospital tomorrow.” and my sister said “oh you expect me to go tomorrow?? that would be...challenging. i mean i could go for 2 hours....” what i felt was pure rage
the hospital only allows one visitor for each entire day (no trading out shifts). and i had assumed (like a normal person) that we would trade days and never leave her alone. my sister literally said she can’t do it cuz the kids have horseback riding tomorrow.
and she won’t be available much this week cuz of work (again, she’s taken no time off her stupid pointless zoom meetings whereas i’ve had to put my career on hold just to come to this hellhole where she cleans up after me every time i leave a room & the dog eats all my stuff)
how can anyone be this entitled, after she’s been given so much? since i’m not married & don’t have kids, every resource in our family (including my mom’s time) have been devoted to her & her spoiled kids. now they seem mad cuz they have to carpool (“why can’t Tante Julie do it?”
my sister and her family have literally never visited me in california. in fact i’ve received almost no visits from anyone in the family. they act like because i don’t have kids i don’t exist, like i’m not a real person whose life matters. so now the thought that these selfish...
assholes may succeed in controlling my mom’s time here on this planet, that they may send her to a rehab for her last months just because it will make the home smoother and more controllable for them ... it’s unbearable. i don’t know how to fight back against these dead souls
i am really struggling with this awful dynamic (and it’s only been two weeks!). i would appreciate hearing from anyone who has thoughts or suggestions, even if we don’t know each other. thanks for listening and letting me get it out ❤️
mom received a card in which the lady reveals she too has cancer (Stage 1 Breast) which is treatable unlike what mama has. lady asks for mom’s well wishes & support. “wait, is SHE asking YOU for support—from your hospital bed?! Get in the back of the line lady!”
having fun carrying contraband in my sling like an 80’s terrorist
“I’m NOT gonna let you force-feed me like a GOOSE!”
mom’s biggest priority is making sure I don’t bother the nurses for anything she needs (like oxygen)
i was delivering devastating news to someone over the phone while in the background my niece blared DREDEL DREDEL DREDEL I MADE IT OUT OF CLAY on her flute

little comedy beat to break the tension
respiratory therapist is prattling on and on about herself ... do we look like we have all the time in the world lady?! wrap it up!
mom urging me to watch an Amish influencer on youtube
in mom’s world, the Amish are not allowed to dye their hair but they are allowed to use electricity and start youtube channels.

“well ... they have to adapt, too!”

“isn’t the entire point that they never adapt?!”
i’ve been wearing short dresses to the hospital because it’s impossible to pull my pants up with a broken arm. one of mom’s oncologists was going on about chemo and metastasis while staring at my legs. still got it!
mommy got the news she’s likely terminal this morning—alone—before visiting hours even opened. the oncologist gave her the option to do chemo or not do it. she wants to try. she facetimed us crying & told us. seeing your mom crying on facetime, knowing she’ll die soon...no words
mama: “at least we know we’ve hit the bottom of the barrel right? it’s only up from here!”
me: “well at least you’ve done the hard part [telling her sister] ... it’s all downhill from here!”

mama: “all downhill ... right into the grave!”
mom now calling me Kathy Bates from Misery
did i mention i had to drive myself to the ER with my non-dominant left hand, severely painful broken right arm hanging at my side? cuz the other adults had work to do in their home offices (on a saturday evening)? i’m truly living the horror movie version of terminal cancer
I’m renting out my house in Big Bear (cuz who knows how long I’ll be here)

mom: “wow you must be raking it in.”

me: “yeah every time you take a turn for the worse I see dollar signs above your head.”

now every time something horrible happens we say to each other “cha-ching!”
Mama has gained fifty pounds of fluid in one week. 3 weeks after diagnosis. Pancreatic Cancer is a *hideous* disease
just openly weeping as i stand in line at Walgreens to pick up another oxycodone prescription for my broken arm
the affirmations app is *not helping*
She’s dreaming out loud a lot now — both talking in her sleep in German, her native tongue, & murmuring pleasant nonsense when she’s awake ... “those CUTE dresses ... “you’re warming my heart ...” like a conversation she’s having with someone who isn’t here
She’s looking forward to seeing all her puppy dogs again ❤️
Her eyes are very shiny and wide open and shockingly blue, like someone visiting from another world
now whenever i hear the constant drone of always-on zoom calls echoing throughout the house, i’ll always think of my mother’s impending death 🙏🏻
my sister lives in the kind of neighborhood where people drive trick-or-treaters around in golf carts
mama has been having mild hallucinations (we’re hoping due to the 48 hours straight chemo). she keeps saying things like “do you see that man crouching in the corner?” i asked if they could be ghosts. she said she knows they’re not real. feels like she has one foot in each world
need help in South Carolina: my mom has been in the hospital for two weeks and she *really* wants to vote today. does anyone know how people in South Carolina who are in the hospital can vote? (nb she’s a lifelong Democrat in the South and she gave money to Jaime Harrison)
i’m starting to understand why i feel so gaslit in this house: i overheard my nephew asking my sister about abortion (like where does she stand?) and my sister’s husband answering for her that she is against it but doesn’t feel it should be legislated. THE FUCK?
she said she wouldn’t want abortion for anyone in her family (inc her daughters?) we grew up in a liberal house, went to good colleges, she has a high power corporate job. we all vote blue. but its like invisibly, she became a right-winger who isn’t racist so she still votes blue
another example: my mom’s primary care doc failed to even order an ultrasound after a month of severe belly pain (until my mom threw a fit & they discovered Stage 4 cancer). now they’re charging her a $250 cancellation fee *cuz she doesn’t need a wellness doc when she’s dying*
my horrible sister has them on speaker phone trying to cancel, and when the person said “do you authorize this card for the cancellation fee?” i said “no we don’t!” and my sister jumped down my throat. sister: “she signed a contract so she’ll pay it” oh a precious contract! sorry
cancer is pretty much all indignities but one of the many is how canned and stale all the jokes are. on the other hand, it’s easy to kill at a deathbed
my sister “doesn’t have time” to spend time with my terminal mom (beyond visiting twice in 2 weeks at the hospital & popping in for a few minutes three times a day into mom’s room which is literally across the hall from her villain lair, her **home office**
today i overheard some weird zoom coming from her home office & asked her what it was. apparently her global consulting firm is hosting a conference about the “shadow pandemic” (domestic violence while ppl are trapped at home). “it’s so important and no one’s talking about it”
(she says literally standing over her own mother’s deathbed, which she only has a couple minutes to do cuz she has to get back to raising awareness for pandemic domestic violence by watching a zoom)
meanwhile i’m doing 95% of the caregiving (cuz there is no choice, not for me anyway, not for the best most loving mom in the world). sister seems to think that managing her own life on her own, w/o her nanny (mom) is sacrificing as much as me who has had to put my career on hold
today we were watching The Golden Girls and Blanche’s sister reveals she’s dying (after Blanche said a bunch of insulting stuff). mom laughed really hard but i was just gutted at her — who is actually dying — laughing hard at a joke about someone revealing they’re dying
i showed mama a pair of boots i’m gonna order. she told me to get her a pair too. *she almost can’t get out of bed and can’t walk on her own and can only move a few feet.* just gutted by this. but i told her i would order her some
i find myself swallowing any noises about places we’ll go together, things we have to look forward to before they come out of my mouth
this morning mama was so sick she couldn’t face trying to get down the stairs to go to a doctor’s appointment so we had to miss it. heaving “i remember my dad toward the end, they had to carry him up and down the stairs. he was just a bag of bones.” she’s said this over and over
when she was hallucinating, there was a moment when i think she thought she was quoting a movie (I think Young Frankenstein??) but she had made up the “quote” and then was laughing really hard at her own wit. just a charming person through and through, even when not in right mind
we spent all day at the Cancer Center today (8:30-4:30) with no food cuz we arrived with a flat tire and had to get the car towed while mama was receiving “replacements” (replacement blood, platelets, electrolytes, etc). no one told us an appointment for labs would last all day
when we got home i watched my precious always-loving mother crawl up the stairs on her hands and knees. it took thirty minutes and she still had to be carried the last few steps
mom had to be taken to the ER by ambulance yesterday cuz she felt the walls were closing in (lungs filling with pneumonia). when i arrived this morning she wasn’t responding. i asked the oncologist to tell us if my sister needs to come. her: “i’ll try but only god knows for sure”
she just came to briefly and asked what time it is. i told her to look at the clock and tell me herself (we’ve all been trying to test her cognitive status all day). she responded (slurring and barely audible): “Julie. You’re not my shrink.”
mama grew up in Austria where everyone skied (her dad was a cobbler). when she was 10 she fell on the slopes. her dad told her to ski through it, stop whining. a neighbor carried her down the mountain on his skis. they took her to the doctor the next day and she had a broken leg
i’ve been telling this story to explain why she’s never said the word “pain” to any medical professional, why she argued that i was overreacting when i took her to the ER last time (and she wound up being admitted for 2 weeks). prob why i drove myself to the ER w the broken arm!
she still talks about how much that leg cast up to her hip itched. she lost crochet needles in there trying to scratch it
tues night the head nurse on the oncology ward pulled me out of the room & put her arms around me & said “i need you to know she’s close. we can’t know for sure but as an old oncology nurse, i think it will be 2-3 days. say what you need to say now. tell her what’s on your heart”
i started bawling and i kept saying over and over “no one would tell me...i asked everyone how long and not even the doctor would say...thank you for telling me. thank you so much for telling me.” she said they don’t want to take away hope
i walked back in the room bawling (after the head nurse held me for a while) and mom came to (for one of the only times that day) and said, slurring, barely audible, “Julie! Why are you crying?” “because you’re so sick Mommy.”
she’s mostly “asleep” now (which palliative care says is not sleep but a fog, like diminished consciousness). she moans a lot which they say is physiological. she’ll occasionally “wake up” and respond with a word, showing she understands, and it means so much to me. i keep trying
a few weeks ago i said to her, “you know how Oma comes to us in red cardinals and David comes in blue birds? what are you gonna come to me as?”

mom: “you’re gonna be living in that movie The Birds.”
she keeps saying “wow” which makes me even more unimpressed with Steve Jobs’s last words “oh wow” when he died of pancreatic cancer. some genius!
I put Dad on the phone so he could say what he needed. He apologized for being “such an asshole” & asked her forgiveness. He said now he’s on a spiritual journey (w his evangelical 4th wife) he understands he met a demon when they were married & the devil led him astray. Thanks!
he also mentioned that the demon had five husbands (“FIVE husbands!” he repeated) before she died of substance abuse. he said he & mom would still be together today if he hadn’t met that demon, and in her barely conscious state mom rolled her eyes
mama keeps laughing to herself in her twilight delirium ... soft chuckles, presumably at her own hallucinations. like i said, it’s easy to kill at a deathbed
mom’s sorority sister called & was going on about the christmas cactus mom gave her. strategizing how she could get it to us. “we’re not focused on the christmas cactus, thanks!” i hung up & said to the housekeeper “NO ONE CARES ABOUT THE FUCKING CHRISTMAS CACTUS!” mom laughed
then she called mom’s long-time neighbor & asked her to pick up the christmas cactus before driving the 2 hours up here to see her. me: “IGNORE THE CHRISTMAS CACTUS. IGNORE THE SORORITY BOOKS. WE’RE NOT DOING THAT NOW. NO ONE CARES.”
mom’s neighbor lived next to her for decades before mom sold the log cabin i grew up in 2 months ago. neighbor is a medical connoisseur: “i’ve had 25 surgeries!” she insisted on spending 48 hours straight w mom in hospital a few weeks ago & wouldn’t have left if i hadn’t insisted
neighbor revealed “well, you know, mother was an invalid most of her life ...” and then it all added up
neighbor was here saying goodbye this afternoon & she goes “are you gonna cremate her?” *in front of my mom who was actually awake & understanding.* then she goes “you could scatter her ashes on the mountain.”
mom: “that scares me.”
me: “WE’RE TRYING TO FOCUS ON TODAY. THANKS!”
i’m finding there are Grief Vultures. my mom hadnt been lucid in days but suddenly she was...so the housekeeper shot her shot. “do you remember me? i cleaned your room when you were here before. I’m Sharon. remember me?”
THIS MAY BE MY LAST CHANCE TO SPEAK TO MY MOM SHARON. GTFO
mama was a legal secretary for many years. i just saw her raise her hand to her ear and say “can I help you?” the way she used to when she would answer the phones
mom is so beloved, i’ve been walking around with two phones in my hands like Anna Chlumsky in Veep, fielding all the calls, facetimes and texts from family, friends, co-workers, neighbors, my childhood friends, people i’ve never heard of, etc etc
the death watch hospitality cart
mama’s having lots of conversations with the ghosts. she sounds like Hal at the end of 2001: generating random spurts of her typical conversations over a lifetime. “ok! we need to get going.” “i’ll make the cheese straws.” “yeeeep.” “oh boy.” “wow” “i’ll let you know the results”
it’s like running the hardest marathon in the world where the prize at the finish line is your mom dies
it’s really nice to have my sister and brother-in-law here to tell me what to do for my mom after i’ve been doing this full time for five weeks
when you’re caring for your terminal mom, you develop systems that don’t need to be messed with by tourists who come an hour a day. thanks for throwing out MY SPOON, now i have to ask the passive aggressive RN John (who said her breathing wasn’t his problem) for another SPOON
my sister is literally playing tennis with her kids right now (when i haven’t left the hospital campus in a week). it’s honestly a blessing
me to the passive-aggressive RN John a few weeks ago, before we reached comfort care:

“i want you to tell the oncologist she can’t breathe cuz breathing is what allows her to stay alive.”

“well, that’s true for all of us.”

🤯 “EXACTLY!”
long-time readers of this thread will know why i find the following posts that popped up in local Big Bear facebook groups while I was literally watching my mom’s chest to make sure she’s still breathing so meaningful ❤️
love to spend some of my mom’s last lucid moments listening to a consultant who manages other consultants yammer away loudly on a zoom right here next to her hospital bed
also love having my mom tell me that me complaining about my sister zooming in my face cancels out all the wonderful things I’ve done for her over the last 5 weeks
i swear the obsession with work über alles is cultural and social sociopathy enacted at scale by the corporations that manage every detail of our lives. that my mom is *on her deathbed* saying i’m in the wrong cuz my sister “can’t stop doing her job” ... pure rage. no words. 😡
my sister *doesn’t want to stop doing her job cuz she’s happy to rely on corporate welfare in the form of her sister doing everything for our mom and enabling her sociopathic devotion to her pointless and meaningless consultant-for-consultants job.* fixed it!
we transferred to hospice yesterday. mom just picked up her phone and started playing Austrian yodeling on youtube. i honestly can’t tell if she’s enjoying it or she’s hallucinating again
i told her about how when she was unresponsive the nurses told me to play music from her homeland so i played Austrian folk music ... the peppiest percussion & accordion you’ve ever heard. she stirred from her dreams & said “noooooo.” i told her about it just now and she laughed
my sister revealed her strategy for dealing with our step-mom/sister (who thinks she knows everything & takes charge of all situations despite being the least educated among us): my sister treats her like a dementia patient. “that’s her level.”
my dad visited the hospice today and (surprise) my teenage bulimia is BACK BABY
mom doesn’t seem to understand that she’s going to die soon. she keeps saying things like “what about the spiral project?? well i guess we can finish it when we get home ...”
today she wanted me to help her get up to go to the bathroom just to see if she still had the strength. (she hasn’t moved from bed in 10 days) when she couldn’t even sit up & was panting from exertion, she said “i’ll take a break now but let’s make this a priority to do tomorrow”
a hospice room is not the *ideal* place to dust off your old bulimia ... there are nurses coming in and out and people dying on either side of these walls. not a great space for wretching (tho i do have plenty of practice in quiet wretching from high school)
cancer delusions:
“we have GOT to get going”
“what i DON’T understand is why you won’t help me get out of bed.”
“it’s clear this isn’t working. we need to figure out something different.”
“i have asked u again & again why you won’t let me just sit in the yard.”
“i need exercise”
i remember seeing posts about other people’s moms dying & thinking “they must just have a normal mom, there’s no way that could happen to me. there’s no way someone who loves me this much could die.” now it’s happening to me & i’m beginning to understand everyone feels that way
“i just don’t foresee anything good coming from this.”
usually when going through a really hard time, you can sort of identify one thing you have to look forward to and hold onto that. but what do i have to look forward to? my mom being dead and me being all alone in the world?
they over-medicated her in the middle of the night (ativan plus dilaudid at once) so now mama keeps falling asleep while i try to feed her. i tapped on her mouth with the spoon & said “open the hangar.”

she murmured: “here comes the airplane ....”
Dad’s 4th wife stood over the hospice bed of my mom (his 1st wife) and started crying, telling her she feels like my mom is her mom ☹️
I guess one thing I do have to look forward to is no longer having to make life-or-death decisions with my sister the consultant
my sister: “we need to find a way to let you get a good night’s sleep.”
me: “well you could sleep next to her. there’s no reason it always has to be me.”
sis: “noooo... I don’t think it’s necessary. not if she’s waking up asking for water then falling back asleep.”
I loathe her.
before this i had been telling her about how mom is getting agitated at night, waking up calling my name multiple times a night, begging me to help her out of bed.
sis: “welll this is your chance to deal with a newborn. this is what it’s like. [eyebrows raised patronizingly]
scum
everyone in our family (except her husband & kids) is shocked at how she’s acting. even Dad who always favored her as kids. literally everyone is commenting on it. it’s this sociopathy she picked up along the way, maybe from consulting, maybe from her husband’s emotionless family
she justifies not doing any caregiving with “i’m at peace with whatever happens.”
mom has been her nanny & housekeeper for over a decade. mom has allowed her & her husband to do simultaneous business trips w 3 kids for over a decade. mom has spent all her time helping her. rage
my niece just asked me if i’m not married cuz i don’t want them or they don’t want me. “i think it’s cuz they don’t want you.” she went on to say people become too old to get married and she thinks that’s me. (i swear this convo just happened.) i’m living in a terrible indie
mama said almost nothing intelligible yesterday except one thing: we were watching HGTV’s Flip or Flop, and when Tarek came on screen, she said “whattttt an idiot”
three generations watching The Golden Girls together (mama, who is nearly unresponsive, laughed at one of the jokes 😍)
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