This Shit Is Bananas: When the Bubble Meets Everyone Else’s Comfort
This Shit Is Bananas: When the Bubble Meets Everyone Else’s Comfort
Dear Diary,
At some point in Alzheimer’s care, you realize you’ve been quietly recast.
You started as the loving, devoted one. The daughter who stepped up. The reliable presence who “always has it handled.”
Then, without a single costume change, you become something else:
the gatekeeper #brickwall
the fun police #unhinged
the one “keeping everyone away” #controlling
the Unhinged Villain #burnbaddieburn
What changed?
You committed the one unforgivable sin in a denial‑soaked family system:
You set boundaries.
You set routines.
You set schedules.
You stopped doing workarounds.
You started doing grown‑up, boring, basic risk‑management things like:
taking the car keys because she is no longer safe to drive (or accepting them when she hands them over freely and you stand there thinking, well, that was some shit)
asking people to stop calling her at 3:30 a.m. to “rehash what you don’t like.”
saying no to big family gatherings, she absolutely cannot handle — because she begged not to be the one enforcing that
insisting major health updates go through you, so she isn’t fielding ten overlapping questions she can’t track
requiring that all scheduling runs through you, so visits and outings don’t blow up the routines that keep her even semi‑regulated (per her request)
From inside the Bubble, this is called basic safety.
From certain seats in the bleachers — out in Comfort World — it’s called:
“You’re being controlling.”
“You’re keeping us from her.”
“You’re making it all about you.”
It’s not about them.
It’s not about me.
It’s about her.
HER.
Somewhere between preventing falls, blocking scammers, and calming 1 a.m. meltdowns, I apparently auditioned for The Unhinged Villainous Caregiver. #wearthecrownproudly
I got the part. #caregiverslife
The Thunderstorm Night
There is one night that lives in my nervous system like it happened yesterday.
Thunderstorm. Nine p.m.
Rain is dumping sideways.
Lightning is cracking too close.
No shoes.
No umbrella.
She’s at the corner of a busy street, on the phone with an “other,” trying to step into traffic to go find whatever nonsense they’re hyping up on the other end.
I’m sprinting after her in the dark, soaked to the skin, heart doing that sickening stutter‑thump that says: If this goes wrong…
We get her back inside.
I’m shaking, soaked, furious, and terrified. I send a very toned‑down version of what I am actually thinking to the group chat:
“Please don’t amp her up to wander in a storm. You are promoting wandering, and we already have this issue here. Make it stop. If I’m blocked by whoever is currently on her phone, help shut it down.”
In my head, this is the nicest of the group chats lately. This isn’t the first time I’ve caught her outside in the rain, chatting on the phone, staring toward the apartments across the super‑busy intersection.
What comes back is not grown‑up:
group‑text dramatics
pearl‑clutching about my “tone.”
declarations that they “won’t be part of anything outside of medical.”
Alzheimer’s is a medical condition. Seriously medical. We are literally talking about brain atrophy. #alzheimersismedical
Every symptom is medical ~ physical, and mental.
But sure. Let’s make my terrified, adrenaline‑spiked text the emergency. Let’s make my tone the problem. I used to be civil. Direct and blunt. Today, you get who you get.
Energy for energy.
That night becomes Exhibit A in a private case file in my head and in texts, labeled “This Shit Is Bananas.”
Custom Bubbles, Clashing Comforts
One of the cruel jokes of dementia care is that every Bubble is custom‑built.
What worked for someone’s grandma ten years ago might implode here in thirty seconds.
What keeps our days even slightly calmer might not make sense in:
Your “helpful tips” Facebook group
Your cherished holiday traditions
Your need to believe everything is “not that bad.”
People love to trade stories:
“My cousin’s neighbor’s aunt had Alzheimer’s, and she did just fine going to big family parties.”
“My grandfather drove until he was ninety‑five; taking the keys is cruel.”
They say it like their anecdote is a universal truth instead of one data point in a disease that shows up differently in every brain.
Here’s the part everyone forgets:
Every Bubble is its own ecosystem. Created in the suffering brain.
The routines that keep her steady here are not theoretical. They are built from:
Specific triggers we’ve lived through
Specific disasters we’ve cleaned up
Specific medical realities, her chart does not sugarcoat
You don’t have to understand her hyper‑aware, sassy‑ass, fight‑mode Bubble.
She is not daft. She has not checked out. She has short-term memory loss with a black belt in fight‑or‑flight, and the fight is strong with this one.
But if you want to be anywhere near her Bubble without making things worse — for her or for me — you do have to respect it.
Because the caregiver isn’t your problem.
Your perception of what happens when you aren’t here — that’s the problem.
For decades, I was the one people leaned on, benefited from, counted on. I was useful. I was convenient. I was the one who “could handle it.”
The second I stopped making their comfort my top priority and put her needs first, I became “the problem.”
It couldn’t possibly be them.
Of course not.
It had to be me.
This is what I mean when I say: this shit is bananas.
Caregiver vs. Audience: The Bubble Cut vs. the Highlight Reel
From the outside, our lives are dangerously easy to underestimate.
She can still have good minutes. Good hours, sometimes. On the right day, with the right audience and enough adrenaline, she can still pull off a performance. #Oscars
You might see:
a coherent story about the past
a familiar sparkle in her eyes
a joke with perfect timing
a moment of startling clarity
You leave thinking:
“She seems fine to me.”
“Everything seems normal.”
“You make it look easy.”
What you don’t see is the director’s cut.
You don’t see:
The confusion when the call ends, and she no longer knows what day it is
The wave of anxiety an hour later: “Someone’s stealing from me.”
The way your visit stirs up old memories, her brain can’t file correctly, then leaves me to untangle the knot
The Looped questions and accusations that echo for hours once you’ve gone home to your quiet house
Here is how the split actually looks from where I stand:
Caregiver (Bubble World):
Sees the full twenty‑four‑seven arc
Live the meltdowns after the visits on repeat
Cleans up the emotional mess after the “honest conversations.”
Adjusts meds, routines, and safety plans so she can sleep at night
Audience (Comfort World):
sees twenty‑minute highlight reels
gets charmed, thanked, maybe even remembered
gets to leave
Then the Audience goes home and discusses “what’s really going on” based on:
that one decent afternoon
her performance level that day
their own terror of what it would mean to admit how bad it actually is
From that distance, it’s easy to say:
“You’re being too protective.” #controlling
“Maybe you’re overreacting.” #unhinged
“She told me she’s doing great…?”
You believe someone with a diagnosed memory disease and several years in this diagnosis over the one who lives in her world and your world simultaneously?
Underneath, what they might really mean is:
“I’m scared to accept how much has changed, and it’s easier to believe the parts that feel familiar.”
That doesn’t make them evil.
It makes them human.
But after years of receipts, invitations, explanations, and crisis‑mode cleanups, “I didn’t know” starts to sound a lot like “I didn’t want to know.”
They hold tight to their highlight reel.
I live the Bubble cut.
And yes: this shit is bananas.
The Unforgivable Sin: Boundaries
There is a script for the “good daughter” in families like mine.
She is endlessly available.
She never complains.
She cushions everyone else’s feelings.
She absorbs every consequence.
The minute you deviate from that script, people notice.
They notice when you say no to a visit that will blow up her bedtime and turn into a 2 a.m. panic.
They notice when you refuse to hand out keys — physical or emotional — to people who use them like weapons.
They notice when you shut down a group text that has turned into a performance of concern instead of actual support.
They call it controlling.
They call it cruel.
They call it selfish.
They upgrade it to: narcissistic, childish, vicious bitch, unhinged control freak who “writes a blog to make them look bad.”
What they do not see is the other version of selfish — the one where they get to feel like good people at the cost of her safety and my sanity.
No one said, “Don’t help.”
What we said was: your help comes with specific needs.
If you cannot or will not adjust to those needs?
Get out of my fucking way.
So yes, I set boundaries.
I said:
You cannot call her in the middle of the night to process your feelings.
You cannot show up unannounced, spin her into a frenzy, and then leave me to clean it up.
You cannot ignore medical reality and then blame me when I enforce it.
From here, that is what love looks like.
From the cheap seats, it looks like villainy.
Thorny crown on, baby.
Dazey’s Hot Tips: Telling the Bubble from Everybody Else’s Comfort
Because if you’re living this too, you need more than validation. You need a damn field guide.
Hot Tip #1: If It Calms Her, It’s Bubble. If It Just Calms Them, It’s Comfort.
Look at any request and ask:
Does this help her feel safer, calmer, less confused? Bubble World.
Or does it mainly help someone else feel less guilty, less scared, less left out? Comfort World.
You are allowed — obligated, actually — to prioritize Bubble over Comfort every single time.
Hot Tip #2: Watch the Aftermath, Not the Visit.
If someone swears they’re “so good for her,” but:
She doesn’t sleep that night,
She spirals into paranoia the next day,
or she loops on the same fears for forty‑eight hours or 15 days,
That visit did not go well — no matter how pretty the photos looked.
Judge by the crash, not the snapshot.
Hot Tip #3: Your ‘No’ Is a Safety Device, Not a Debate Topic.
When you say no, you are not inviting a family referendum.
No to midnight calls.
No to chaos visits.
No to dragging her into everyone else’s unresolved drama.
You are not required to give a PowerPoint on why. “It dysregulates her” is enough. “It breaks the Bubble” is enough.
Hot Tip #4: Stop Explaining Your Brick Wall to People Who Like Open Doors.
Some people are addicted to access. To them, any boundary feels like punishment.
You can:
Explain once, clearly, like an adult,
Send one follow‑up in writing,
and then let their reaction be data.
If every boundary turns into a meltdown, congratulations — you’ve found the problem, and it’s not you.
Hot Tip #5: If You Can’t Respect the Bubble, You Don’t Get a Front Row Seat.
If someone:
refuses to adjust their behavior,
weaponizes guilt when you enforce limits,
or keeps blowing up her Bubble and calling it “love,”
Then they get demoted to the balcony.
They can send cards. They can get the generic update. They do not get unfiltered access to the person I am trying to keep safe.
That’s not cruelty. That’s brick‑wall caregiving.
Dazey’s “How NOT To” Guide: Creating Chaos in an Alzheimer’s Bubble (Please Don’t)
Since some folks insist on being the main character, ‘the others’ in her medical saga, let’s spell it out.
How NOT to treat an Alzheimer’s loved one who is hyper‑aware, sassy, and stuck in fight‑or‑flight:
Do NOT call at 3 a.m. to “talk it all out.” That’s not support. That’s nervous‑system arson.
Do NOT stir up old drama, then hang up and sleep great while she lies there shaking.
Do NOT tell her she’s “playing mind games” when her brain literally can’t file memories correctly.
Do NOT dump your guilt, grief, or anger on her and call it “being honest.” That’s emotional abuse, not vulnerability.
Do NOT gaslight her when she reacts. If she feels hurt, scared, or angry, her feelings are real even if her timeline isn’t.
Do NOT play “good cop” on the phone and then text me that I’m the one who has to clean up the fallout.
Do NOT weaponize her diagnosis — “Well, she won’t remember anyway” — as a free pass to behave badly.
Do NOT text what you don’t want reread on repeat til ww3 verble attacks need my attention to help ‘fix’.
If you recognize yourself in that list, I say this with all the love my brick wall can muster:
For her sake and mine, step back until you can step in without setting her Bubble on fire. Block her, block me… keep it fucking blocked. Come into her Bubble with kindness, or get out of it completely.
Call to the Other Bubble‑Dwellers
If you’re also living between Bubble World and Everybody Else’s Comfort, I see you.
You are not crazy. You are not cruel. You are not “making it all about you.”
You are the one standing in the storm, soaking wet, heart pounding, dragging her back from the edge while everyone else argues about your tone.
You are the brick wall between her and the bullshit.
If you know another caregiver bracing themselves between those two worlds, send this to them. Let them know they’re not the only “unhinged villain” out here choosing the Bubble over everybody else’s comfort.
Because out here in the real world of Alzheimer’s care, that’s not villainy.
That’s love — with a spine.
