She Presents Well, and Apparently I’m the Problem
Dearest Dazey and the Peeps Who Don’t Get It,
I said I wasn’t coming back until the book dropped.
I changed my mind.
Because this fucked-up reality, this strange little Alzheimer’s Bubble we live in, deserves some attention.
This month, “I can’t” is the vibe I’m going with.
“It’s good that he’ll be with y’all. He’s the sensible, balanced one.”
“You know how she is.”
“Rein her in.”
“Vicious bitch.”
“Unhinged.”
And all the other dismissive bullshit that comes with caregiving inside the Alzheimer’s Bubble of the Cottage.
She’s super intelligent. She also has major short-term memory loss and something called “showboating.” Yeah, that was a new term for me, too.
It means she can pull off an Oscar-worthy performance when she needs to. She can appear calm, capable, charming, and completely aware of what is happening.
Then come the temper tantrums no one witnesses except a select few.
If you’ve witnessed one of those tantrums, consider yourself part of the inner-inner circle of one brilliant mind experiencing trauma and atrophy in slow motion.
And things.
Because sometimes, “and things” is all I’ve fucking got left.
I Can’t Make This Shit Up
Just so you know, I cannot make this shit up.
Repetitive? I know.
But apparently, it bears fucking repeating.
I’m not that creative.
Or imaginative.
Or devious.
I just can’t.
A medical professional sits in a sterile room filled with instruments and a weird-ass bed-like thing. He pulls up a stool and gets close.
Too close.
She is boxed in by a counter covered in scary shit, a wall, me, and this person leaning toward her with his elbows resting on his knees.
Then he says:
“If I told you that you would die in four to six weeks, would you have the procedure with the surgeon?”
He didn’t tell her it was palliative.
He didn’t clarify what the hell he was talking about.
Neither one gave me room to ask questions.
I lost the fucking room.
Like, for real.
Let that sink in for a minute.
Four to six weeks.
Death.
A procedure.
A surgeon.
She has a childlike understanding of some things, no reliable real-time memory, and flashes of brilliance you would expect from a Nobel Prize winner.
All living inside the same traumatized brain.
When the facts disappear, her brain fills in the blanks.
Then she decides who is in charge.
And in that moment, it sure as hell wasn’t me.
It wasn’t even him.
It was her quiet-ass brain, planning, plotting, and maneuvering around information it could not fully understand or remember.
We were in so much trouble.
That isn’t a threat.
It’s a fact.
And before anyone says, “Well, you got what you wanted,” let me stop you right there.
No, I fucking didn’t.
We can save the full rehashing of that particular pile of bullshit for another day. It deserves its own diatribe.
Today is for the visceral truth.
Today is for all the “get over it” people.
The “feelings are overrated” people.
And honestly, maybe they’re right.
Apparently, I don’t have feelings.
Or, at the very least, I’m not fucking allowed to have them.
Not in this life I supposedly created for myself.
Not in this reality where I’m told I got exactly what I asked for, wanted, and deserved.
Macho misogyny much?
Fair warning: this isn’t a feel-good story.
This is not a “caregiving is a blessing” story.
This is not the part where I say I should feel blessed, grateful, and honored every second of every day.
We’ve done that shit before.
This is not that story.
All of this was placed directly into the lap of a woman with Alzheimer’s disease as though she could calmly absorb it, process it, weigh the consequences, and make a fully informed decision right there in that sterile little room.
And I’m the problem.
I Left for Maybe Fifteen Seconds
I stepped into the hallway to take a breath.
The entire walk took maybe ten or fifteen seconds.
I turned the corner to go back into the room and found him standing outside it, already talking on his cell phone.
To a surgeon.
Not the surgeon’s office.
Not a receptionist.
Not someone calling to ask about availability.
The actual surgeon.
The same surgeon who cornered me three years ago and then covered his ass when I started asking questions.
Questions like:
“Didn’t you begin this conversation by telling me she was in recovery? Then why did you say you had to ‘close her up and send her to recovery’?”
“Why couldn’t you at least get the biopsy you said this procedure was for when we agreed to it?”
“Wasn’t the surgery aborted because the mass was too large?”
“Wasn’t the Whipple procedure no longer an option, just as we had been told during the previous consultations and preoperative visits?”
“And now you’re asking for approval to do something she already said no to, after you and four other doctors said it wasn’t advisable?”
I asked questions because I was trying to understand what the hell had happened.
The discharge papers said she could go home. I had asked for her release after she pulled out her own IV twice.
I asked the most basic question anyone in my position would ask:
“What happens now? How do we move forward?”
Apparently, that was enough to get me dismissed and classified as the unstable, difficult family member.
Present Day
Meanwhile, I was trying to live inside the Alzheimer’s Bubble and the real world at the same damn time.
I was trying to manage the Emmy-winning actress vibes while also handling the symptoms no one else seemed to witness.
I keep a color-coded book to track the days when things happen.
Red for the scary, important shit.
Softer colors for the rest.
Does anyone important in this sad, sorry story ever want to see it?
Nah.
The only person who has shown any interest in seeing it is the palliative care nurse we met last week.
Because how much this month has changed.
I was trying to protect her from medical problems I was never trained to handle.
And that was before adding the memory loss.
“If I don’t remember it, it never happened.”
“I don’t know why you keep asking me these questions.”
“I have Alzheimer’s. I can’t remember shit.”
That patient.
That brilliant, terrified, Oscar-worthy patient.
Decisions Were Being Made Without Me
From the tone of that one-sided conversation, the doctor and surgeon sounded very comfortable with each other.
Best-friend vibes.
#BFF.
The phone call ended.
Then I was told:
“He’s going to have his office call you to schedule a consultation for the bypass procedure.”
The palliative procedure.
Just so everyone is aware, this isn’t some quick fix followed by a juice box and a Band-Aid.
I had been told it would be almost as invasive as the Whipple procedure.
Instead of the ten-hour surgery we had already faced, this one would still take several hours.
It could leave her with drains she might pull out.
It would not save her.
It could mean she would need twenty-four-hour care from that moment forward.
It might prolong her life by a few weeks.
Maybe a few months.
But what kind of life?
Potentially tortured, invasive, medically managed time instead of quality time.
You know, exactly the kind of shit already addressed in the living will and DNR on file.
Circa 1997.
Not to mention that I hold full medical power of attorney.
Yet I was not consulted.
I was not asked:
“Do you mind if I call the surgeon’s office?”
“Would you prefer to return to the previous surgeon or get a second opinion from someone new?”
“Would you like a specialist to explain the potential benefits and risks?”
“Would you like time to discuss what palliative means in this situation?”
Nope.
I was ignored.
Invisible.
Powerless.
The decisions were already being made.
All it took was one terrifying question:
“If I told you that you would die in four to six weeks, would you have the procedure?”
And he got a yes from his super-awesome patient.
The one who presents well.
The one who can deliver the right answer without understanding the full weight of the question.
The one who now believed I had conspired against her.
The one who became viciously angry and so frightened that she couldn’t stay safe in the damn car on the way home.
All because of one fateful visit with someone who had apparently labeled me before ever meeting me.
But I’m the problem.
Always.
I’ll Tell You How That Afternoon Ended
She tried to get out of the car in a fit of rage we hadn’t seen in three years.
We were at the corner of Blue and Air.
In four o’clock traffic.
The door was open.
Her feet were almost out.
That’s how that doctor’s visit ended.
And if that wasn’t enough, she wanted her trusted doctor on the phone immediately. So, from the car, we called his cell phone.
His actual cell phone.
We were trying to help her feel safe again. We were trying to settle her back into the car and somehow defuse what had already become a full-blown bomb.
Then we arrived at the Cottage.
She refused to go inside.
Instead, she started down the street.
She barely had the energy to walk, but she still made it around the fence and onto the porch before collapsing into the rocking chair.
Then came the crocodile tears, her brain still in shock and already plotting, planning, and adjusting.
The same survival moves the dreaded ex and stepmonster trained into her over a lifetime.
So, the cell phone doctor got another call.
This time, I needed to know how much medication was too much medication to calm this batshit-crazy situation down without creating an entirely different emergency.
Following that call, three additional pills were added to her normal regimen.
Three.
And what should have tranquilized most adults only mildly defused the bomb.
Hours later, she finally took a “nap.”
That was the aftermath of one calm little conversation in one sterile little room.
Everyone else left the appointment believing she understood what had been said.
I got the open car door in four o’clock traffic.
I got the rage.
I got the refusal.
I got her walking down the street.
I got the emergency calls about how much medication it would take to calm the storm someone else had created.
But she presented well.
So, what the fuck do I know?
But She Presents Well
She was diagnosed nine years ago.
There were more than three years of symptoms before that.
She has been under the care of neuropsychology all these years, and I have never caused a hiccup. I have never challenged them.
Not one fucking challenge.
Yet no one believes me when I say:
“She presents well, but this is not going to go well.”
No one believes me when I say:
“I am not exaggerating the gastrointestinal symptoms. The endoscopy, scans, blood tests, and even the ‘aborted’ surgeries should have made that painfully clear.”
They see a polished moment.
I live with the aftermath.
They see the performance.
I see what happens when the curtain comes down.
They get the calm answers, the social smile, and the convincing little nods.
I get the fear, confusion, rage, accusations, panic, and emotional wreckage after her brain has tried and failed to process what just happened.
But sure.
I’m the problem.
The Caregiver Is Always the Problem
Apparently, it is acceptable to pretend she is consistently cognitively aware, emotionally present, and capable of understanding something terrifying in a calm, rational, adult way.
It is okay to say whatever the hell you want to her, as long as she looks like she understands.
It is acceptable to ignore the person standing beside her who has spent more than a decade watching this disease chew through her ability to process, remember, regulate, and recover.
It is acceptable to believe the ten-minute performance instead of the caregiver who lives through the other twenty-three hours and fifty minutes.
But when I warn them?
When I interrupt?
When I explain that she may repeat the words without understanding their weight?
When I say she might look fine now but fall apart later?
Suddenly, I’m difficult.
I’m controlling.
I’m emotional.
I’m overreacting.
I’m the one who needs to calm down.
Be reined in.
The unstable, unhinged problem in the room.
Because apparently, advocating for someone with Alzheimer’s is only admirable when the caregiver remains quiet, agreeable, and convenient.
The minute we stop smiling and start telling the ugly truth, we become the problem in the room.
Here’s the Fucking Truth
Presenting well is not the same as being well.
Repeating information is not the same as understanding it.
Nodding is not informed consent.
And nine years in, neither is her meek, overly accommodating “yes” when what she really means is:
“I’m tired, and I want to go back to the Cottage.”
Looking calm isn’t proof someone feels safe.
Answering a question doesn’t mean the person can retain it, process it, or live with the emotional consequences after everyone else has left the room.
Alzheimer’s does not always announce itself with chaos.
Sometimes it wears lipstick.
Sometimes it smiles.
Sometimes it cracks a joke and charms the entire room.
Sometimes it gives people exactly the performance they need to dismiss the caregiver standing three feet away.
Then everyone goes home.
Except us.
We stay inside the Bubble with the fear, confusion, questions, and fallout.
So, yes, she presents well.
She always has.
That does not mean she understands what you just placed inside her frightened, injured brain.
And it does not mean I’m the problem because I refuse to pretend otherwise.
Dazey’s Hot Tips
“She presents well” is not a complete cognitive assessment. A convincing social performance can hide serious problems with memory, processing, reasoning, and emotional regulation.
Palliative care is not simple. Families deserve a clear explanation of what a procedure involves, what it may change, and what the patient’s quality of life could look like afterward.
Medical power of attorney is not decorative paperwork. Include the person responsible for medical decisions when the patient cannot fully understand or retain the information being presented.
Speak with care. Don’t drop a terrifying hypothetical on someone without considering what their brain can understand and retain.
Listen to the caregiver. We are not trying to control the room. We are trying to prevent the explosion that everyone else gets to walk away from.
Do not confuse agreement with understanding. A nod, a yes, or a repeated phrase does not automatically mean informed consent has happened.
Believe patterns, not performances. Medical professionals may see a polished snapshot. Caregivers live through the entire unedited film.
It is rather simple
I am tired of being treated like the unstable one because I understand the reality everyone else gets to visit briefly and then leave behind.
I am not exaggerating.
I am not being dramatic.
I am not trying to take away anyone’s dignity or autonomy.
I am trying to honor the living will, the DNR, and the decisions made before Alzheimer’s stole her ability to understand what is happening now.
I am trying to protect a brilliant mind living through trauma and atrophy in slow motion.
If that makes me difficult, so be it.
I can live with being called difficult.
What I cannot live with is staying silent while everyone applauds the performance, ignores the legal documents, dismisses the caregiver, and leaves the woman unraveling behind the curtain.
Medical Terms, Without the White-Coat Word Salad
What Is a Whipple Procedure?
A Whipple procedure, also called a pancreaticoduodenectomy, is a major and complex abdominal surgery.
It typically removes the head of the pancreas, the first section of the small intestine, the gallbladder, part of the bile duct, nearby lymph nodes, and sometimes part of the stomach. The remaining organs are surgically reconnected so the body can continue digesting food.
It is commonly used to treat certain cancers and other serious conditions involving the pancreas, bile duct, duodenum, or nearby structures.
Translation: This is not a small procedure.
What Is Palliative Care?
Palliative care is specialized medical care focused on easing the pain, symptoms, stress, and suffering caused by a serious illness.
Its goal is to improve the patient's and family's quality of life.
Palliative care can begin at any stage of a serious illness and can be provided alongside surgery, chemotherapy, radiation, or other treatments intended to control or slow the disease.
Palliative care does not automatically mean hospice, and it does not automatically mean someone has stopped receiving treatment.
What Is Hospice Care?
Hospice is comfort-focused care for someone believed to be approaching the end of life.
Under Medicare guidelines, hospice generally applies when doctors certify that the person is expected to live six months or less if the illness follows its usual course.
That six-month estimate is not an expiration date. Hospice care can continue beyond six months when the patient remains eligible and is recertified.
Hospice focuses on comfort, dignity, symptom management, and support rather than trying to cure the terminal illness.
What Is a Bile-Duct Bypass?
A bile-duct bypass, also called a biliary bypass, is surgery that creates another route for bile to flow around a blockage.
The surgeon connects the biliary system above the obstruction to the intestine or to a lower part of the bile duct.
The purpose is generally to relieve problems caused by blocked bile flow. Depending on the person’s condition, it may be performed as a palliative procedure intended to ease symptoms rather than cure the underlying disease.
It is still surgery.
Palliative does not mean painless, risk-free, simple, or minor.
What Is an External Biliary Drain?
An external biliary drain is not the same thing as a surgical bile-duct bypass.
It is a catheter placed through the skin and into the bile ducts. It allows bile to drain outside the body into a collection bag when a blockage prevents it from flowing normally into the intestine.
Some drains are internal-external drains. Those cross the blockage and allow bile to drain into the intestine, an external collection bag, or both.
Drains require monitoring and ongoing care. The exact procedure, risks, recovery, and drain type depend on the blockage location and the patient’s overall medical condition.
A Necessary Medical Note
These definitions provide general educational information, not personal medical advice. The treating medical team should clearly explain the proposed procedure, its purpose, its risks, and its expected effect on quality of life before any decision is made.
Still waiting on that info they still haven’t had the balls to share.
Author’s Note from Dazey
This one isn’t polished grief or inspirational caregiving bullshit.
It’s what happens when someone with Alzheimer’s presents well for ten minutes and the caregiver inherits the fear, rage, confusion, and fallout everyone else gets to walk away from.
I am not trying to steal her dignity, silence her voice, or control every decision. I am trying to protect a brilliant, traumatized mind while honoring the living will, the DNR, and the choices she made before Alzheimer’s began filling in the blanks.
If telling that truth makes me difficult, unstable, or unhinged, so be it.
I can survive the labels.
I can't stay silent while everyone applauds the performance and leaves me alone with the woman unraveling behind the curtain.
Love ya, mean it,
Dazey
