If I’m the Problem, Why Don’t You Visit When I’m Gone?
If I’m the Problem, Why Don’t You Visit When I’m Gone?
Let’s start with the obvious: dementia didn’t just happen to her.
It happened to all of us.
Her brain is glitching, my life is on fire, and somehow the group chat has decided the real crisis here is… that I set boundaries. #burnbadassburn
If I’m the problem, riddle me this: why don’t you visit when I’m gone?
The Villain Origin Story (Apparently, It’s Me)
Somewhere between her first, “Wait, what day is it?” and the 24/7 supervision phase, there was a quiet vote.
The role of Devoted, Exhausted, Emotionally Unstable Caregiver went to me.
The role of Others went to… well, you.
Opportunistic. Tragic. Hardly Ever Right.
You know who you are:
The distant relative who breezes in every three months and announces, “She seems fine to me.”
The sibling who reposts mental health quotes but can’t manage a 20‑minute visit. #unhinged
The friend who says, “Just call me if you need anything,” and then develops a rare allergy to phone calls. #ghosts
Yet somehow, when I say:
“No, you can’t just ‘pop in’ during her sundowning meltdown.”
I become the villain.
Not dementia. Not the system.
Me.
When You See Her, She’s Charming. When I See Her, It’s 3 A.M.
When you see her, she’s on her best behavior:
Dressed cute (because I dressed her).
Hair Professionally Styled (because apparently I moonlight as a salon). #failed #iykykyk 🤣😂😘
Smiling, chatty, cracking that one old joke her brain hasn’t deleted yet.
You leave thinking:
“Wow, she’s doing great. Are you sure it’s that bad?”
When I see her, it’s:
1:37 a.m. – She’s in the hallway with her purse, convinced she has to go to work… from the job she retired from five years ago.
3:05 a.m. – She’s furious because someone took her “things,” and I am now a very suspicious‑looking stranger who just happens to resemble her biological mother.
4:22 a.m. – I’m Googling, “how do caregivers make it safe and everyone happy?” like there’s a secret level no one told me about.
You see the performance.
I see the outtakes, the bloopers, and the scenes so dark they never make the reel.
But please—tell me more about how she “seems fine.”
The Caregiver Math No One Likes to Do
Let’s do a little emotional accounting:
Her brain is declining.
My capacity is declining.
Your involvement is… what’s the word… theoretical.
I manage:
Med schedules
Doctor visits
Insurance nightmares
Meltdowns, confusion, paranoia
Her grief over losing herself
My grief over losing her while she’s still here
And then on top of it, I’m supposed to manage your feelings about how uncomfortable this all is.
You’re upset because I gave real information and said: schedules, routines, no surprise visits, and no, she doesn’t want to sit next to you while you scroll your phone. She wants to do things you actually plan and participate in—like a child who still deserves intentional time, not background noise. #receipts
Meanwhile, I’m:
Calming her down when she accuses me of stealing her things, and refusing to throw “others” under the bus just to get a temporary pass.
Explaining for the 19th time today that yes, you did call at 4 a.m. and again at 7:30 a.m., and yes, there were texts all day and night.
Pulling up the call log like a prosecution exhibit.
But sure. You’re right.
The real problem is my tone.
The Fantasy Version of You vs. the Real One
In my fantasy world, you:
Visit regularly without needing a parade or a cookie. Pat on the head?
Step in for two hours so I can go to the store alone, shower, cry in my car, or stare at a wall like it’s a spa treatment.
Talk to her, not over her, not down to her, and not like you’re the main character in a Hallmark movie about your own generosity.
Ask me how I’m surviving, and genuinely want the honest answer—without twisting it into an accusation about what you know you’d never be able to do. (#guiltymuch)
In reality, you:
“Mean to come by,” but “time just gets away.” It’s wild how that only happens in one direction.
Call just long enough to feel better about yourself.
Critique my choices from a safe distance while you #gossip, #blame, and #redirect.
Get very offended when I say, “No, today doesn’t work.”
Let me make this brutally simple:
If you’re not here helping hold the weight, you don’t get to critique how I’m carrying it.
If you can’t help, get out of my fucking way.
Boundaries Look Like Control to People Who Don’t Help
Here’s the part you really hate: I have boundaries now.
They sound like:
“Please don’t correct her when she gets the story wrong. Just go with it.”
“Don’t argue with her reality. It makes things worse.”
“You can’t promise her things I can’t deliver.”
“If you visit, I need you to be present, not scrolling.”
“If you talk badly about me to her, you don’t get access to my kindness. You might also start something from 1986. #justsayin”
To you, that sounds controlling.
To me, it’s survival.
Dementia is chaos. If I don’t set the rules of this little collapsing universe, it eats us both alive.
So when I say:
“No, you can’t take her out alone anymore; she doesn’t like that.”
it’s not about punishing you.
It’s about keeping her alive.
But again—I’m the problem.
Let’s Talk About When I’m Gone
You say I’m overprotective. Dramatic. Exaggerating.
Cool. Cool.
Umm, who’s the delusional one?
So picture this: something happens.
I get sick. I burn out. I land in the hospital. Or I finally collapse under the weight of all this.
And suddenly…
It’s not me answering the phone.
It’s not me escorting her to the bathroom.
It’s not me tracking meds, moods, and a hundred invisible details.
It’s not me keeping this precarious, terrifying, sacred mess afloat.
Will you visit more when I’m gone?
Will you show up then?
Will you rearrange your schedule for her once the person you love to criticize is removed from the equation?
What would you do without me?
If I really am the problem, removing me should fix everything, right?
Spoiler: it won’t.
Because the problem is not me.
The problem is a disease eating her brain and a culture that loves to observe caregiving, perform concern, and then vanish when there’s actual work to do.
What I Actually Want From You (Yes, You)
You might be waiting for the sentimental twist where I say, “I know you’re trying your best.”
I’m not there today.
I’m the one living the past through someone else’s life and failing mind. I’m the one who listens to the real when I’m mistaken for her mom instead of her daughter. I’m the one who deletes the awful words you text her—words she obsesses over—so her feelings can calm down and we don’t have to rehash how tragic reality is versus her bubble.
Here’s what I am going to say:
If you love her, prove it in behavior—not in opinions about my behavior.
Here are some wild, radical, borderline‑illegal‑in‑this‑economy ideas:
Come sit with her for an hour so I can run errands without sprinting.
Bring a meal that isn’t wrapped in guilt or commentary.
Learn about Alzheimer’s or dementia so you stop saying, “But she just told me…” like that means something.
Ask what actually helps instead of deciding what should help from the comfort of your couch.
And if you can’t do any of that?
Then, at the very least, don’t make this harder. It won’t be tolerated here.
Don’t:
Gaslight me about what I’m living 24/7.
Tell her I’m “too strict” or “too controlling” when you drop in for 30 minutes and leave me to deal with the fallout.
Act like I chose this out of a hobby‑level interest in suffering. Her life changed. My life changed. Not yours.
For the Other Caregivers Reading This
If you’re reading this and nodding so hard your neck hurts, this part is for you.
You are not the problem.
You are the unpaid staff. The on‑call emergency line. The grief sponge. The emotional punching bag. The physical one, too. The historian. The nurse. The security system. The bodyguard. The last line of defense between your loved one and a world that doesn’t get it—and doesn’t really want to.
You’re not “too much.” You’re not “too intense.” You’re not “making it bigger than it is.”
You’re just close enough to the fire to actually feel the heat. #scorched
People far away will always insist it looks smaller.
One Last Question
So I’ll ask it again, not as a joke, but dead serious:
If I’m the problem, why don’t you visit when I’m gone?
Because when that day comes—when I can’t hold this role anymore—you’re going to wish you’d listened.
To her. To me. To the reality you didn’t want to see.
Until then, I’ll keep being the “problem” who keeps her safe—and keeps your spoiled asses in check about what’s real and what you’d rather it be.
You’re welcome.
If you’re a caregiver and this hit a nerve, you’re not alone. Save this for the nights you start to wonder if you’re really the crazy one.
You’re not.
You’re just the one still showing up.
