The End Comes at a Cost
Every decision feels heavy now: burdensome, heartbreaking, and loaded with consequences no one else seems eager to carry.
The Alzheimer’s diagnosis was never the worst part.
The duodenal mass simply made everything more tragic.
Once Upon a Time, She Was a Force
Once upon a time, she was controlling, independent, stubborn, and powerful. She was a hot mess who chose the wrong life partner, both first and last.
Yet that choice gave her the three best parts of her life: two sons and a daughter.
I’m the daughter.
I became her lifeline when I was twelve.
Eventually, she found the courage to leave her mistake behind and go it alone, whatever it took. She formed lifelong friendships early and cultivated her ride-or-die alliances during the pivotal years of empty nesting, quietly absorbing the toll it all took.
She steamrolled through life, creating a path for herself and sometimes for everyone around her. She adapted. She played different roles depending on the relationship. She even stayed friends with the dreaded ex until she no longer had to.
Her connections with family were reflected in the friendships and relationships surrounding all of us. Her memory was legendary. It was so sharp and powerful that when she was diagnosed with Alzheimer’s, many people didn’t believe it.
They thought the doctors must be wrong.
They trusted her words because they couldn’t see her internal struggles. They didn’t witness her rapidly changing needs or understand what was happening to the daughter she had trained to toe the line, figure it out, and forge ahead.
For better or worse, that became our path forward.
The Bubble She Built
In the cottage she helped envision, and later told everyone she had built, she created a Bubble.
She carefully chose what to reveal, what to hide, and who was allowed to know the truth. She shared only with a select few.
She had always found ways to cope, from the disastrous stepmom years to the unapologetic later days of:
“I have Alzheimer’s. I don’t remember shit.”
She schemed, planned, and charted her own course.
Long before she understood how much her life would change, she prepared a living will, a general will, and a power of attorney. She revised everything when she realized she could no longer live alone.
The disease began taking pieces of her long before the doctor visits, tests, blood work, and scans finally explained why she was forgetting things she never would have forgotten before.
One day, she didn’t know where she was.
She only knew that she should know.
During the middle years, she was hyperaware, filterless, and almost childlike, except inside a doctor’s office. There, she could perform brilliantly.
“I doubt anyone would recognize that I have Alzheimer’s,” she would boast.
Loud, proud, and forever the actress, she reveled in showing off her brilliance.
And she was brilliant.
That was part of the problem.
When the Family Fell Apart
She was dealt a brutal blow when the family she had so carefully cultivated could no longer come together in peace.
The harsher blow came when they blamed the person she trusted more than she trusted herself.
Me.
They tried to make her “see reason.” She would listen, work it out in her mind, talk about it on repeat, and attempt to forge ahead as she always had.
She knew her feelings didn’t align with what they told her. Still, she enjoyed holding court and having everyone’s attention, no matter what it cost.
She couldn’t see the consequences of her decisions or words. She only knew they were back in her personal world, giving her the attention she desperately wanted while their own busy lives kept passing her by.
She fought.
She begged.
She fought again.
She cowered, persevered, and struggled.
How could she keep everyone together, preserve the peace, and remain in her beloved cottage, the one place she had lived for more than seven years?
She wanted peace, not stress.
Instead, she got chaos and heartache.
So she created a new version of the Bubble:
“If I don’t remember, it never happened.”
Period.
Down the Medical Rabbit Hole
We told the specialists these things while they searched for some holy grail capable of softening the finality.
Routine blood work led us down another rabbit hole: a complete gastrointestinal train wreck.
A large duodenal mass was causing anemia, and it was in a terrible location. It was discovered six years after her Alzheimer’s diagnosis.
Still brilliant and hyperaware, she wrote down her wishes, verbalized them, and even made a recording.
Her trusted doctor, along with several others, told her the Whipple procedure was not a reasonable option. It is an extensive surgery that can take ten hours or longer, carry serious risks, and require the removal of portions of several organs.
Her directive was strong and unmistakable:
“Cure me. Fix me. Keep me comfortable. But don’t make me worse.”
No chemotherapy.
No radiation.
Let her live peacefully, with quality in her new, stress-free life.
Keep her out of pain.
It was spoken, written, recorded, and shouted from the rooftops to anyone willing to listen.
The Surgeon’s Workaround
The surgeon proposed a workaround.
He planned to remove her gallbladder and, hopefully, reach the mass, remove it, or at least obtain a biopsy.
The morning of the procedure, she agreed. We brought her in, and she was sedated.
I was told the operation would take approximately two hours. There was no reason to remain in the waiting room. They would call when she was out of surgery.
One overnight stay, and all would be well.
Thirty minutes later, my phone blew up.
I was needed back immediately.
I was downstairs in the coffee shop. The phone rang twice more while I waited for the elevator, asking where I was.
I was frantic.
When I finally reached the surgical floor, they placed me in the little consultation room reserved for no-good-news conversations.
“We weren’t able to do what we wanted,” the surgeon explained. “I found the mass. It’s close to, or approximately, ten centimeters long. There is no blockage. The Whipple is the only option.”
He assumed we were alone in the room.
Physically, we were.
But I’m excellent at dictation, and I was typing everything into our family group chat in real time.
He said I was upset.
Damn right, I was upset.
He had already told her we shouldn’t agree to a Whipple. Three other doctors had agreed it should not happen.
And yet, with her sedated and unable to speak for herself, he asked me for the one thing she had expressly refused.
The group chat confirmed it went against her wishes and her doctors’ recommendations.
He closed her up and sent her to recovery.
Somehow, I Became the Problem
I called for reinforcements to join me at the hospital for the postoperative conversation.
The surgeon never came.
A nurse eventually told us to go home and rest. He would not be coming that evening, and we could talk in the morning.
Six minutes after we went downstairs for coffee, he appeared. He later documented that we were nowhere to be found.
The next morning, he came into her room. I immediately put him on the phone with another loved one from the group chat.
Later, her discharge paperwork stated that I had been mean to him and his staff.
I wasn’t mean.
I was dismissive.
I was also exhausted, furious, and trapped in an impossible situation. I had been asked to violate her written and spoken directives. Then I was criticized for asking what came next and requesting that she be allowed to go home, as she was begging to do.
From that point forward, no doctor seemed eager to discuss the mass.
Her symptoms were intermittent and elusive. I treated them with over-the-counter medications recommended by her pharmacist or GP. We avoided uncomfortable conversations because she was strong, charming, and presenting beautifully.
Ever the actress.
If I mentioned symptoms she didn’t remember, or didn’t want to discuss, I became the liar.
I was inaccurate.
Dramatic.
Exaggerating.
The bad guy.
And the people who preferred that narrative happily accepted it.
Karma Has a Sick Sense of Humor
The following year, she woke up cheerful and spicy.
“My side hurts. Do you think it’s my appendix?”
We began asking important questions she couldn’t answer, couldn’t recall, or simply wouldn’t share.
She was in pain. That was enough.
I called her GP, and we all agreed she needed to get into the car and head to the emergency room for a scan.
Karma is a bitch.
It was her appendix.
And guess who was on call to remove it?
The same surgeon who had documented that I was mean and difficult the year before.
I called for reinforcements. Someone stayed with her while the hospital prepared for surgery. Someone else gathered her favorite post-op necessities.
We expected to stay a day or two.
The appendix had to come out.
Three days later, she was home recovering from another abdominal surgery, and still, no one wanted to discuss the mass discovered the year before.
Nothing to do.
Nothing to discuss.
Maybe, they suggested, the appendix had caused the symptoms I kept asking about.
Sure.
Why not?
Blood, Hospitals, and Forgotten Shoes
Approximately eight months later, she announced that she was going to watch her show.
“Lock the door on your way out. See y’all in the morning.”
Ten minutes later, she called in a panic.
Her nose was bleeding, a lot, and it wouldn’t stop.
We rushed the ten feet to her cottage. Blood was pouring from her nose like a broken faucet.
We asked the important questions. We attempted triage. We called 911.
The ambulance arrived, followed by fire trucks and enough commotion to fascinate her completely. Eight emergency workers somehow fit inside the tiny cottage with a gurney.
They whisked her away, and I followed in my car.
“Don’t forget to bring her shoes when you come.”
Of course, I forgot the damn shoes.
After two cauterizations, they packed her nose and repeatedly told her not to remove the packing.
So naturally, she removed it.
She treated IVs the same way. Once she decided it was time to leave, no one could stop her.
“Well, I took it out just like they put it in,” she would say, waving like a princess as she marched toward the hospital’s wide exit doors, and any car that looked vaguely familiar.
She wanted to go home.
Back to the cottage.
Back to the cat.
Back to her Bubble.
The Symptoms Nobody Wanted to See
Iron infusions followed a few months later, managed by the newest doctor on her constantly expanding team.
The first series included three infusions.
Her numbers looked terrifyingly low to me. I know just enough to recognize patterns, observe signs, and notice symptoms.
Not once have I questioned what she wanted.
Not once has this been about what I would choose for myself.
When she decided to live with us all those years ago, she already knew something was changing. One night, she sat us down for a serious conversation about what she expected, what she wanted, and what she knew she would eventually need.
During the second round of infusions, new symptoms appeared. It looked like she might be receiving too much iron.
Still, we followed the directions.
Eventually, life softened into a less stressful routine.
Several months passed before more symptoms appeared. I mentioned them during a follow-up appointment with the hematologist.
He ordered scans, reviewed them, and didn’t seem overly concerned. Her blood work had changed despite no corresponding medication changes. Her sense of taste and food intake were changing, too.
No one appeared concerned when I mentioned it.
So I stopped pushing.
I have learned that when I push too hard, with family or specialists, I become the problem. I’m dismissed, criticized, or accused of being dramatic.
Eventually, you start wondering whether they’re right.
Maybe I look too closely.
Maybe I try too hard.
Maybe I need to back the fuck off.
Her following appointments were easy and mostly worthless in terms of useful information. They collected the blood work, saw the version of her they wanted to see, and maintained the status quo.
But the symptoms that had once been random became consistent.
They weren’t leaving.
Her appetite changed.
The foods she could tolerate changed.
Her sleeping patterns changed.
Her weight changed.
She experienced discomfort, nausea, constipation, and pain that required constant management.
Still, it was considered normal-ish.
No one seemed concerned.
Did I Fight Hard Enough?
Did I fight hard enough for her?
Did I push enough?
What the fuck do I know?
I ask questions. I listen. I accept the answers from everyone involved.
Want to block me?
Cool.
Want open communication?
Cool.
Want to call me mean?
She called me worse for decades. She still does. Alzheimer’s didn’t steal that talent, I must admit.
Why would that bother me?
I was trained by a master.
She’s impressive.
Her advice has always been:
“Just apologize and move on. I don’t care if you’re right. The fight isn’t worth the pain it will cause.”
Meet people where they ask to be met.
But the symptoms still weren’t leaving.
To me, they seemed consistent and increasingly worrisome.
Her follow-up appointment was the next week.
We would ask again.
Don’t You Lie to Him, Young Lady
On the day of the appointment, her blood work revealed several changes.
When I explained that she had symptoms that weren’t going away, she looked directly into my eyes.
“I do not. That’s not true.”
Then she turned toward the doctor.
“Don’t you lie to him, young lady.”
Suddenly, I was five years old and caught in a fib.
She continued talking to him about events from thirty or fifty years ago, depending on the story and which names she used.
He suggested another scan.
We agreed.
Later, his clinic notes stated that if the mass caused a partial or complete blockage, they would not intervene surgically. The notes referenced palliative treatment or hospice.
I asked for clarification and contacted her beloved GP.
The specialist had said concerning things during the appointment, but getting a direct explanation was nearly impossible. She wanted to talk about the past and sounded completely competent while doing it.
Damn, she’s good at hijacking a doctor’s appointment.
Four to Six Weeks
Preparing her for a fasting scan was a production of its own.
Short-term memory loss, cramping, nausea, missed medications, and a powerful desire to skip the scan and get Starbucks do not create a smooth morning.
The extra medications made her spicier, more tired, and sleepier, but at least they controlled the worst symptoms.
Antinausea medication three times a day.
Senna morning and night.
Miralax.
Constant discomfort.
Problems with underclothing.
Another two pounds lost in one week.
When the doctor entered to discuss the scan findings and recommendations, I asked twice whether he could document everything clearly. I also asked whether we could follow up without memory loss muddying the conversation.
Instead, he looked directly at her.
“If I told you that you would die within four to six weeks without bypass surgery, would you do it?”
He did not call it a palliative procedure, as he had when speaking to me.
He called it surgery she needed to avoid dying.
Of course she answered yes.
She was being respectful to her doctor.
Then he contacted the surgeon who had already opened her, failed to obtain a biopsy, been unable to remove the gallbladder or mass, asked me to approve a Whipple against her directives, and documented that I was difficult.
The specialist did not ask whether we wanted to return to that surgeon.
He went on autopilot and pushed forward.
His office called me to arrange the consultation.
Now, if another endoscopy, MRI, Whipple, or biopsy isn’t considered safe, what makes a duodenal bypass safe?
She is nine years into Alzheimer’s.
We have known about the large mass for three years.
It couldn’t be biopsied.
It couldn’t be removed.
Most importantly, she had already told us what she wanted.
Cure Me. Fix Me. Keep Me Comfortable.
The cardiologist completed the necessary testing and found no significant heart problems.
“See you in a year,” he said.
She develops what looks and behaves like pneumonia two or three times a year. The last time, they didn’t do an X-ray. They simply prescribed medication.
It kept her safe, comfortable, and healing in the way she wanted and needed.
Why put her through more stress when we all know this may be another hard part of Alzheimer’s?
After discussing the scan, we walked toward the elevators.
“See you Tuesday for the next iron infusion,” we said.
Then the doctor quietly added:
“If you notice yellowing of her skin or eyes, take her to the emergency room and, of course, call us.”
This warning has hovered beneath the surface of her last three appointments. It is usually delivered without drawing her attention.
Yet that same doctor asked her whether she would consent to bypass surgery if refusing meant she would die within four to six weeks.
A procedure could mean nurses around the clock.
Drains she would hate.
Tubes she would try to pull out.
Sedation.
Confusion.
Pain.
Her quality of life could disappear.
Vanished.
Over.
Period.
The Promise I Made
I promised.
I vowed.
Decades ago, when she asked me in her blunt, matriarchal fashion to do the hard things, I said yes.
I will not fail her now.
Maybe you believe I have already failed her. Maybe your perception of how this story should unfold differs from mine.
Apparently, I’m not supposed to share it.
Apparently, I’m not supposed to have my own story.
Remember, I “got what I wanted.”
I got control.
But remind me: Who in their right mind would want this control?
Who would choose the responsibility, blame, accusations, exhaustion, and impossible medical decisions that come with this sordid saga?
This isn’t some grand Shakespearean tragedy performed safely on a stage.
This is our life.
There is no script.
There is no intermission.
And there is no understudy waiting in the wings to take my place.
What Would You Do?
I am her sole caregiver and medical decision-maker.
I get little help because, apparently, I “got what I wanted” when I established structure, built a routine, and kept the chaos out of her home.
So, what would you do?
Would you approve another procedure because a frightened person with Alzheimer’s said yes after being told she might die?
Or would you return to the wishes she expressed when she fully understood what she was asking?
What choice reflects who she is, what she wanted, and what she needs now?
I’ll tell you what I did.
I asked every doctor involved to create a real plan based on her directive, her needs, compassionate care, and quality of life:
“You can cure me. You can fix me. You can keep me comfortable. But you cannot make me worse.”
I don’t know how this will play out.
I don’t know what happens next.
But I know I will not stop advocating for her.
I promised.
I pledged to give her safety, fun, and stress-free living, with the best quality of life I can provide, for as long as I possibly can.
The end comes at a cost.
I just refuse to make her pay more than she already has.
Author’s Note From Dazey
This story is mine.
It is my experience, my perspective, and my truth as the daughter standing in the rooms, answering the calls, reading the medical notes, managing the medications, and carrying the decisions home.
You may believe it.
You may question it.
You may read it, ignore it, judge it, or walk away from it entirely.
Do whatever brings you peace.
I didn’t write this to convince everyone I’m right. I wrote it because caregivers are constantly told to remain quiet, protect everyone else’s comfort, and swallow the parts of the story that might make someone uncomfortable.
I’m done swallowing.
Caregiving isn’t always about finding a miracle treatment or saying yes to every available procedure.
Sometimes, it means standing in a hospital consultation room and remembering the promises everyone else has conveniently forgotten.
It means separating what can be done from what should be done.
It means protecting the person someone was before the disease changed how they answered questions.
Sometimes, it means becoming the bad guy in someone else’s version of events so the person you love doesn’t have to suffer through another chapter they never wanted.
I can live with being called difficult.
I’m not sure I could live with betraying her.
There may be a book at the end of 2027.
Then again, life has taught me not to promise what the universe hasn’t finished screwing with yet.
Until then, this is the story as I lived it.
Believe it, read it, or ignore it at will.
Love ya. Mean it.
Dazey
Dazey’s Hot Tips: Advocating When the Decisions Get Heavy 🔥
Document Everything
Keep copies of advance directives, powers of attorney, living wills, recordings, medical notes, and written care preferences.
When the room becomes emotional and memories become selective, documentation can speak clearly.
Ask Doctors to Explain the Goal
Is the procedure intended to cure the condition, extend life, relieve symptoms, or improve comfort?
Those are not the same things.
Request the Realistic Aftermath
Ask about drains, tubes, rehabilitation, sedation, hospital time, pain, confusion, and the level of care that will be required at home.
Don’t settle for hearing that a procedure is possible. Ask what life may look like afterward.
Separate Capability From Quality
A procedure being technically possible does not automatically mean it supports the person’s quality of life.
Just because you can do something doesn't mean it's the right thing to do.
Bring Reinforcements
Use a group chat, speakerphone, written notes, or another trusted person so you are not carrying every medical conversation alone.
Stress can blur details. Extra ears matter.
Return to the Person’s Established Wishes
When dementia affects someone’s ability to understand or remember a decision, return to the values and wishes they documented when they could clearly express them.
Don’t Let “Difficult” Silence You
Asking direct questions is not cruelty.
Requesting clarification is not disrespectful.
Protecting someone’s wishes is not being mean.
Remember the Real Assignment
You do not have to fix the unfixable.
Sometimes, your job is simply to protect comfort, dignity, safety, peace, and whatever joy can still be found inside the Bubble.
