Not Everything Is As It Seems: Caregiving Behind Closed Doors

Dear Diary,

The structure and routines I’ve built on this wild-ass journey have been called unhinged, uncaring, crazy, and full-on vicious bitch vibes. In their version, I’m the villain—the reason they feel “abused” by the very structure, routine, and consistency we’re told she needs for less chaos, less stress, and a better quality of life. They want the benefits without the boundaries.

So how do we make this work when they don’t think the rules apply to them? How do we protect ourselves and survive this vile disease while still owning this sassy-ass, nothing-is-as-it-seems Alzheimer’s caregiving life? If there’s a handbook for that, I haven’t seen it.

What I’m told to do and what actually works often don’t line up. The “teachings” say one thing; real life kicks my ass. The duality is strong, and the realities are harsh. I would never leave her. I would never give up. But damn—nine years in, this is rough.

“Don’t put me in a home, L. They say it would be easier if you did.”

Things have gotten quieter on the outside, but underneath it all is this steady hum that I’m the problem. They tell her I keep them away, that I’m the reason they don’t try. We all know it’s not that simple. I’m their excuse, their easy out, the convenient bad guy, so they can back away and stay clean in their own story. I’m the evil; they’re the “pious.” I’m the villain in their victim narrative.

They didn’t like the structure or the routine. They didn’t think it applied to them—and how dare I become the brick fucking wall.

“Scheduled outings are always put on this group text thread: time of pick-up, where you’re going, and approximate time of return. As I will be paying for that lunch, I need to know so she has an appropriate amount of money on her. This is not negotiable. It’s not about permission from me—it’s schedule and routine. If you still can’t fucking follow simple needs, that’s not my problem. Amp her up, and I have to give anxiety meds, and then this will be EVERYONE’S problem with me. I warned you. You won’t win against someone nine years into this journey. No one is hurt by this except her. We will not have chaos today. Make it pleasant, or don’t reach out.”

This is today’s version of a letter drafted with an attorney who wondered why we thought a letter would help when a restraining order would be better. The reason? SHE DID NOT WANT TO GIVE UP ON THEM. SHE JUST WANTED PEACE AND COMFORT AND THE CHAOS TO STOP.

Get in her Bubble, understand her LOOP, and let her have a peaceful quality of life in a world that is already frustrating and scary to her.

There are endless opinions about decisions made for independence and quality of life in memory care. But unless you’ve lived it yourself, can you really understand?

I closed one of my business locations, but I still work more hours than most people do in a regular week. I moved to balance work and caring for my loved one. It’s not easy, but it was the best choice for us on this memory care journey. I didn’t choose this role, but I stepped up when it called my name.

There’s a big emotional gap with people who haven’t gone through this. Their views have some truth, but they often miss the bigger picture. Experts tell caregivers to be consistent, manage stress as best as possible, meet loved ones where they are, and communicate needs and wants. We have to be their voice and their sense of time. We have to do what’s needed.

I’m good at this. People often tell me, “You make it look easy.” Maybe it seems that way, but only time will show what this long journey is really like. I know it’s hard—it’s just something that has to be done.

We do it all: prepare meals, keep a structured schedule, make sure it’s safe, and always stay alert. Managing medications and planning outings are key to a good quality of life. Adult caregiving is not for the faint of heart.

“Who’s the parent, L?”
“Depends on the day, N!”

If you’re watching from the outside, remember you only see a tiny part of what’s really going on. Most of it is about restoring dignity and kindness where they’re needed. The person in care hasn’t lost their mind; they just can’t remember the details anymore. What stays with them is how it feels.

Those feelings last. They shape a person’s sense of independence and their need to control their own space. Being an adult isn’t easy, and dealing with memory loss on top of that can be overwhelming, even for the smartest people.

Here’s why it may look easy:

• Schedule

• Routine

• Consistency

• Flexibility when everything falls apart

• Consult those who know more than I do

• Learn

• Absorb the hard-earned knowledge

• Rinse and repeat daily

• Patience

• Kindness, even when you’re exhausted

• Drive to succeed

Ignore the drama. Seriously—let it scream into the void without you. Stay locked on the long-term goal. I know I don’t have all the answers, but I will try almost anything that might make the days calmer, safer, and less discombobulated for the woman I care for—the woman who, by the way, wanted and needed the structure we built.

Am I controlling? No. I am intentional. I am dedicated. My job is to build a healthy, safe, as-low-stress-as-possible environment for a woman with Alzheimer’s who is still her own person on her own journey.

It is not my job to make everyone else feel comfortable, validated, or entertained. I don’t spend my energy worrying about whether this setup works for people outside this caregiving circle. Their inconvenience is not my emergency. They can manage their own feelings; I’ll manage her care.

Here’s my advice after nine years in the trenches: Make the decisions. Set the boundaries. Then hold them—tightly. When the outside world starts to interfere with your core goals of safety and well-being, be clear and direct. Be honest and blunt. You’re not auditioning for approval; you’re protecting a life. Find what truly supports the journey you’re on, and stay rooted in one thing: peace and kindness for the one who needs you most. Everyone else can adjust.

From the outside, it might look rigid, controlling, or “too much.” But not everything is as it seems. The color‑coded schedules, the firm boundaries, the group texts, and the hard no’s are not about power or perfection—they’re about protecting one woman’s peace in a world that keeps shifting underneath her. What looks like a brick wall from the outside is actually a safety net on the inside. You don’t have to understand every decision I make, but if you’re going to step into this story, remember this: behind every “rule” is a scared, funny, stubborn, beautiful human being who deserves calm, dignity, and kindness more than anyone’s comfort or convenience. That’s the part you don’t see—but it’s the only part that really matters.