This is a culmination of tweets I sent in 2019 as I was documenting the process of caring for my mother in Florida while she was dying from stage 4 cancer. This post isn’t really for anyone else, I just wanted to keep a longer-lasting record for myself.
My mom was diagnosed with throat cancer & possibly brain cancer today. I’m still a little shocked.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) January 23, 2019
She’s a terrible human being, but I would never wish cancer on her. This is going to be a confusing and stressful time.
Also: fuck cancer in the eye forever
I don’t know what stage she’s in yet, but survivability rates are pretty grim given her age and other health issues. 😞
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) January 23, 2019
Weird thing is that I keep finding jokes to make, but then I feel bad & don’t make them.
It’s not funny. None of this is. Jokes are how I handle stress.
Quick mom update. It’s stage 4 non-small cell lung cancer that’s spread to her lymph nodes, adrenal glands and brain stem. Need one more test result to know which kind, but none are curable. It’s all going to be palliative care moving forward, probably hospice soon.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) February 20, 2019
Yesterday was a rough goodbye. I reminded mom I’d be back in a week, but she spent most of the day crying and sorting her plant seeds. I kept my shit there, but fell apart in the car to the airport realizing that if she planted them today, she won’t be alive to see them grow
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
She alternates between planning long-term projects months from now and the realization that she likely has only weeks left. Sometimes she tells me she wants it to be over, and other times she says she’s sad to know she’s leaving so soon. All understandable things to feel
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
I try really hard not to cry in front of her. It wouldn’t be helpful, and could make her feel worse.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
But my mind keeps flashing back to her tiny body on the patio, babbling about seeds and their packaging and what she plans to grow, while she sobs about what she knows is coming
She’s sometimes coherent, sometimes rambling for hours, weaving together seemingly unrelated stories with thread only she can see. Hard to tell if it’s all the meds, or the tumors in her brain. It’s all still pretty surreal.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
I feel guilty for leaving my sister to manage this week on her own. I feel guilty for dreading going back there next week to give my sister a week off. But mostly I’m just profoundly sad. I’m seeing anger poking through now though, which I suppose is normal.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
Fuck. Nurse just told us mom is going to wake up one day and not recognize us. 😞
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 26, 2019
I guess I was expecting this. I mean, brain tumors, and all. But fuck.
We head back to FL very early Wednesday. Mom tried to light & smoke a nail file because she was out of cigs a few days ago, so I suspect the difference will be pretty dramatic, even after just a week. Here are some nice pics of her and my family tho. (Her bro + SIL, & my sis) pic.twitter.com/ASZfrTRCDL
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 29, 2019
Really hoping my MBP is finished being fixed before we leave so I don’t have to spend another week on Windows tho 😞
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) April 29, 2019
I know that seems like a weird thing to need at a time like this, but working and focusing is hard enough right now. Fighting my tools won’t improve that.
Back in Florida. Mom’s having a bad night and crying a lot. She doesn’t seem to be in pain right now, just very sad and frustrated, which is understandable. Her cognition is a little worse this week, but hard to tell if that’s the painkillers or the brain tumors.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
She was trying to use the tv remote as a telephone (and was very frustrated that it wouldn’t work), and I think she called me by my father’s name at one point. 😞
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
Fuck cancer forever.
She’s been starting to become adversarial about her meds sometimes now. Last night she refused to take them and just told sis to leave her alone and let her die already. (The meds aren’t prolonging her life, they’re just pain relief and anxiety/depression meds)
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
She’s already said she wishes she could just end it. I wish doctor-assisted suicide was legal here in FL. Everybody deserves the right to die on their own terms, especially when in excruciating pain with no recovery possible
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
She’s lucid enough now to be horrible. 🙄 She’s now telling me how much she hated my hair, how fat I used to be, and how she doesn’t like it when women’s butts are bigger than men’s butts, because they had babies and “let themselves go”. pic.twitter.com/Y6IkhCYw2w
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
Ah, we’re now at the “accidentally FaceTiming me from the toilet over and over” and “hitting the Siri button over and over” part of the day. pic.twitter.com/B6S5mkhVfA
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
There is another part to caring for an infirm/elderly parent that's less emotionally taxing, but exhausting nonetheless. She uses the phone-paging button to call me on a whim, despite knowing I'm working.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
Apparently it was absolutely critical that I sweep the patio, right now.
But they kinda have you over a barrel. If you say you'll do it later, they'll try to do it themselves, and potentially fall.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
So you never get more than 5 minutes of uninterrupted time to get work done. Sometimes the interruptions are serious (meds, etc). Sometimes they're BS.
So you get frustrated. And then they cry because they know they made you frustrated. So you get no work done, and they're upset with you anyway. pic.twitter.com/l5ZQLRk2bO
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 2, 2019
I think I just figured out the urgency. She knows she's going to die, sooner rather than later, but she doesn't know when. So of *course* everything is urgent. *Everything* is *now*. Now is all she knows for sure she has.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
It doesn't really make it less frustrating all the time, but I'm hoping that having realized that, I can keep my cool a little better. I can be a little less selfish, a little kinder, a little more patient.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
That's not to say I didn't almost launch my laptop – that I JUST got back from the Apple Store – across her living room, the 456,987th time today she needed something now, or changed settings that broke something that was working before. But I'm going to try harder.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
That's not to say I didn't almost launch my laptop – that I JUST got back from the Apple Store – across her living room, the 456,987th time today she needed something now, or changed settings that broke something that was working before. But I'm going to try harder.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
She weighed in at 66.5 lbs tonight. I can hear her moaning in pain in her room as I write this, and it's too soon to give her another oxy.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
I just have to sit here until she falls asleep.
Fuck cancer forever.
She weighed in at 66.5 lbs tonight. I can hear her moaning in pain in her room as I write this, and it's too soon to give her another oxy.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
I just have to sit here until she falls asleep.
Fuck cancer forever.
She's also having a manic evening, which means I might not be able to go to sleep for another 4 hours. Her nighttime meds include an anti-anxiety cocktail, but this still happens about every third or fourth night. She's knitting what I think must be a Great Wall of China Cozy
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Ugh. She's on the patio trying to rearrange the windows and watering her plants (that were watered earlier today.) This feels like it's going to be a long night, and I haven't had more than 2 straight hours of sleep since we got here.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Update: She’s still awake. Still crocheting. pic.twitter.com/Sc3C4rozp5
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
The logistics here get a little more complex because she has Hep-C, so any bleeding needs to be handled very carefully, lest we risk infecting ourselves or others.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
I just wrapped a skinned knee and put her to bed an hour ago, but then there was another pain spike.
She just fucked up the TV inputs again. She had closed the door so as not to disturb me, but it’s funny how super-bonkers-stress-level reflexes and static TV sounds at 8k decibels gets through a paper thin mobile home bedroom door. I fixed it, but mostly wish she’d lay in bed. pic.twitter.com/J42npwGnjZ
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
I‘ve done my very best tonight, so I’m going to get some sleep for an hour or so, until I’m woken up by her walker, or her crying, or her sweet little crap dog who decides he will whine until someone plays with him, even at inappropriate times.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Night folks. Love you all.
Mom’s never been great at tech, but when we got here I found extensive handwritten technical notes on how to do things, dozens and dozens in steno pads. How to check her email, etc. So I was trying to think of a way to make things less frustrating for her (and me)… pic.twitter.com/vQ05GtKqe3
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
One real point of frustration is that she keeps managing to mess up the TV inputs. The buttons are small, and sometimes she sits in the remote, etc. So she ends up frustrated and spray-and-praying: pushing all the buttons, restarting the cable box, etc.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Then *I* get frustrated, since it was all working just fine 3 minutes ago when I left the room. She gets mad, I get mad, she feels stupid and bad for bothering me, etc. Massively stressful.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
So I decided to write up documentation, just like she would. Including diagrams. pic.twitter.com/PiqycewO5q
It’s not my best work – her shitty inkjet was not printing well so I had to analog this shit (my hand was cramping before I was done with the first page), but hopefully this will bring us a step closer to peace in the house, with her dignity as intact as possible.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Omg y’all. I was telling a story about how I solved a real-life problem through empathy and documentation, and to marvel at her tech writing skills.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
Stop trying to give me technical solutions here. I know what the options are.
(Also friends don’t let friends buy ink jets.)
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
She melted down earlier, partly because of pain, and partly because she washed herself up a bit and saw what her body looks like now in the mirror. It was pretty hard to just stand there and listen to her sobbing, putting my hand on her back, but having no solutions to offer her.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
She finally settled and decided she wanted to wear a cute outfit. She’s always liked how I did my makeup, so I offered to do hers, & we had a fun photo shoot.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 4, 2019
As I was directing, for the second one, I said “okay, give me the ‘I’m disappointed at what you did to your hair’ look” pic.twitter.com/rIvOyxDib4
Interesting thing in providing 24/7 care for a dying parent is how it affects your own cognition. It's as if focusing on 1 thing for a longer time gives your brain time to defrag. Interruptions every 1-5 min for days have left me unable to remember things like words/names
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 5, 2019
It's entirely possible it's just a symptom of not sleeping a lot or well, but that's pretty normal for me. Today has had fewer interruptions so far (bad pain day for her), and I feel like I can kind of form a complete thought again. For now.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 5, 2019
I wish I had thought to take some sort of cognitive baseline test before and then take them again each day I'm here.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 5, 2019
I just stress-ate a cheese danish. Not even a good one from a real bakery, but one of the pre-packaged ones that never go bad (because that’s not creepy.)
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 6, 2019
I hate this. On top of everything else, I’m going to be 20lbs heavier when this is all over, after working so hard to lose
I’m not even a stress-eater. But when we committed to losing weight, I cleaned out everything in our house that wouldn’t work with our new way of eating. Mom’s place is nothing but junk food, pasta, stews, packaged everything. We bought food for us, but stress + temptation = fail
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 6, 2019
I lost it the first time, so I know I can again, but it’s one more thing for me to be disappointed in myself with. Losing my temper, not being kind enough to someone who is suffering, and not even being able to stop eating bullshit I don’t even like. 😞 pic.twitter.com/s4VeJJzWQa
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 6, 2019
4am hospice nurse visit. 🙁
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 7, 2019
I ended up cancelling the nurse visit. The pain finally exhausted her to sleep, so waking her up seemed counter-productive.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 7, 2019
Ugh. I got an hour and a half of sleep last night, and mom slept all day (because pain) so she is WIDE AWAKE now (past 4AM). She’s hard of hearing now and hates her hearing aid, so the TV is blaring, her O2 machine is humming, and @uberbrady is snoring in my ear. pic.twitter.com/EuMd574HqN
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 8, 2019
Her pain levels and moods swing wildly throughout the day (and night. Sigh.) She went from sobbing in pain and sadness and despair to foggily creeping around the kitchen, Blair witch style, and now she’s back in a manic episode, all within two hours.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 8, 2019
I’m so tired. 🙁 pic.twitter.com/49446Usml1
Today was weird. As in atypical for my experience here. She was not in pain much, but zombie-like. They switched her meds yesterday to up the methadone (nerve pain) and reduce the oxy. Hard to say what made her like this tho, because tumors.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 9, 2019
We all expect there to be loss of cognition, between all the meds and the literal tumors on her brain, but she’s never before needed something and not been able to tell me what it was. We may be at that shitty in-between now.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 9, 2019
She was a little more lucid this morning when we left her, but only a little. She’s very weak now, and is having trouble moving around with the walker. Nurse said she doesn’t think it’s the change in meds.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
She cries a lot now, and can’t usually tell me if it’s b/c pain or sad
I think she knows how close to the end of her road we are.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
The look on her face when I said goodbye… shock, horror, disappointment, profound sadness. I told her I’d see her next week and she wailed “Noooo!”
I really hope that’s not the last memory I have of her.
Between my sis and I, it’s like a horrible game of musical chairs, and we never know when the music will stop playing, which one of us will be there when she draws her final breath, and how awful it might be for her.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
She could go peacefully in her sleep, or suffocate while awake. And whoever is there has to see and remember it, and the one who isn’t there will feel trrrible for missing it.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
Btw, I’ve been keeping this journey in the same thread in case folks need to mute it. Many have reached out to me to offer support and comfort, but I know this issue is pretty raw for a lot of people too. Mute at will, I won’t be offended. We all have to take care of ourselves
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
For those that have reached out, if I haven’t responded, I hope you understand. This is all a little overwhelming. Please know that I’ve read every message, and deeply appreciate your support and kindness. ❤️
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 10, 2019
Sis is with Mom this Mother’s Day, and they shared mimosas.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 12, 2019
Nurses have said she’s “transitioning”, medical-speak for actively dying. She’ll be bedridden soon, her breathing and strength both very weak.
I’m sorry I couldn’t be there for what will be her last Mother’s Day. 😔 pic.twitter.com/NObHOe52Nx
She’s not very coherent at times (because brain tumors and heavy meds). Sis said mom told her that “She could see Texas”, and we’re still trying to figure out if that’s heaven or hell. 😁 (I don’t think mom’s ever been to Texas.)
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 12, 2019
One of my favorite memories of her was when we were little and she’d have to drive the trash cans down to the street. When she’d drop it off, she’s let us sit in the trunk with it open and swerve all over the road. Was SO FUN. Like our own rollercoaster. We’d giggle like idiots pic.twitter.com/AGQd7894mk
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 12, 2019
We’re likely down to hours, not days now – tho that broad is stubborn, so who knows. She’s on liquid morphine and haldol now, and is mostly unresponsive. Her best friend from HS asked if she could talk to her one last time and that’s sticking in my craw as particularly sad.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 14, 2019
I’ve never spoken to someone knowing it would be the last time. There’s probably some good closure in there, but it strikes me as so profoundly sad. It’s weighing on my heart a lot tonight.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 14, 2019
She’s gone. Thank you to all who sent love.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 14, 2019
Right now I feel mostly relief. She’s not suffering anymore. It’s not really sunk in yet, but she isn’t in pain anymore and that’s huge.
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 15, 2019
I am sad. Of course I’m sad. My relationship with her was fraught with peril. She fucked a lot up. She also did some important bits right.
Narrator: it was. https://t.co/JnfYfKMcWD
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) May 15, 2019
CW: parental death
— snipe ⭑⭒⭒⭒⭒ (@snipeyhead) October 30, 2019
My mom died of cancer almost 6 months ago. I took photos of her during her last weeks, b/c it was surreal and also true, and I needed to make sure I remembered the truth. I find myself struggling when scrolling through photos. Not sure if I should hide them pic.twitter.com/NCuLrNguhZ
