This Shit Is Bananas, Part Four: Invisible Until I Break and What It’ll Take to Change This Story

This Shit Is Bananas, Part Four: Invisible Until I Break and What It’ll Take to Change This Story

People love the “strong” caregiver story.

They love the version where I’m endlessly capable, endlessly patient, endlessly available. Where I’m the one who never drops a ball, never loses my cool, never says, “I can’t do this anymore.”

I remember the meds. I juggle the appointments. I manage the bills and the moods—including the ones you don’t know you caused but still blame me for the fallout.

The public scenes. The private grief—hers first, maybe mine, if there’s anything left.

I send the updates, answer the questions, and say, “We’re hanging in there,” even when I’m not sure we are.

From the outside, it looks like I’ve got this.

On the inside, it feels like I have slowly disappeared.

The Caregiver Who Vanished

My old life. My old hobbies. Pre–memory care versus now. Yesterday versus nine years ago.

Nine years of chaos and drama that forced me to understand the Loop, the Reset, the Bubble of cognitive decline—and to fight for change for caregivers who are left to defend the indefensible and somehow create safety (mental and physical) for the one in care.

And often, we do it alone.

The ones who have no help and many spectators.

The ones surrounded by people who don’t get it, don’t want to get it, and have been told a version of events that’s nowhere near the truth.

Because here’s another banana twist: caregivers are made into the villains, while everyone else believes the cognitively impaired.

And that’s the part that really fries my brain:

The better I get at surviving this, the easier it is for everyone else to underestimate what it costs. #asyouwish #fuckit

“This Shit Is Bananas” started as my way of telling the truth about 24/7 Alzheimer’s care—past the polite filters and the “she seemed fine when I saw her” drive‑bys.

• Part One: The Bubble.

• Part Two: When Alzheimer’s turns caregiving upside down.

• Part Three: Boundaries, blowback, and burnout.

Part Four is about something else:

How do we open a real conversation so people can actually see what’s happening—and stop repeating the same painful patterns with caregivers like me?

Because this isn’t just my story.

It’s a pattern I see everywhere.

Why It’s So Easy to Miss What’s Really Going On

I don’t think most people wake up thinking, “How can I ignore caregivers today?”

I mean, there might be a few who wake up wanting to cause chaos for me just for shits and giggles, but not the average person.

What I see instead is this:

People catch a tiny snapshot of our life and assume it’s the whole movie. They want to believe things are okay because that feels safer than facing how hard this really is.

They’re not sure what to do, so they fall back on:

• old habits

• their own perception of what it “should” be

• cultural stories that say, “You’re the daughter, that’s your job.”

If you’ve ever thought or said any of these things, you’re not alone:

• “She seemed fine when I visited.”

• “Her story is different.”

• “I don’t want to hear it, she said…”

• “Medical updates only.”

• “You’re unhinged.”

• “You’re dead to me until you treat us better.”

• “You’re doing great, you should just do it our way instead.”

• “You never accept help.”

About that last one: I actually begged for help.

And every time, it came with a price. The emotional bill got so high I couldn’t afford it anymore. There was no energy left for the verbal volleyball, the drama, and the fallout.

Here’s what it looks like from my side:

• By the time you visit, I’ve done hours of prep, so it feels calmer than it really is.

• She might rally for company, then completely fall apart after you leave.

• I don’t always have the energy to translate every hard moment into something that feels comfortable for you to hear.

So we get stuck.

You see the highlight reel.

I live the director’s cut.

You ask a question, I answer honestly, and my blunt truth “triggers” you.

In that gap, my reality gets minimized, and your good intentions don’t quite land as support.

In fact, my truth has landed as:

• attacks

• accusations

• unfounded perceptions

• total disconnect

I’ve heard things like:

“L, how would you think your writing might help someone else? You say, ‘Don’t be like you or do as you do and did’… yet you’re out here giving advice and sharing what you think will work.”

“You aren’t anything more than a stylist living on your mother's good reputation.”

#iykykyk It really is my favorite fallacy!! #fuckit #beleievewhatyouwill #ideas #notadvice

Well.

Years in, I have pretty firsthand knowledge of what doesn’t work, and a lot of ideas about what might work for you or someone you know.

I know what works today versus 5 years ago, 8 years ago, last year, and last month in our journey and the journey for other caregivers I have met along the way.

Just sayin’.

The Strong Caregiver Story (And What It Hides)

The story people like goes something like this:

“You’re amazing. You’re so strong. I don’t know how you do it.”

It sounds like appreciation.

It can also land like a job description I never agreed to.

Because here’s what that story almost never asks:

• What is this doing to you?

• What do you wish people understood?

• What would actually help this week—like, in real life, not in theory?

When I’m labeled “strong,” a few quiet things happen:

• My exhaustion gets treated like a personality quirk instead of a warning sign.

• My boundaries get read as negativity instead of necessity.

• My pain gets edited out so the story can stay inspirational. My feelings were never a consideration. “You got what you asked for.” Now I simply don’t have feelings for anything outside our bubble and supportive teams.

No one has to be a villain for this to happen. So my “don’t be me” is a life lesson—make it what you need for your own specific journey.

It just takes everyone staying on autopilot.

Part Four is me turning the autopilot off. #burnbadassburn

A Different Kind of Checklist: Questions to Sit With

I’ve written my fair share of spicy checklists for spectators.

This one is different.

It’s not meant to shame you.

It’s meant to start a conversation.

If there’s a caregiver in your life, try asking yourself:

• What am I not seeing?

• Am I basing my opinion on a short visit, a phone call, or a social post—and filling in the rest with assumptions?

• When was the last time I asked about them, not just the person they care for?

• Do I know how the caregiver is sleeping, eating, coping, or if they’ve had a real break that wasn’t just running errands?

• Do I wait to be asked before I act?

• Is it possible they’re too overwhelmed, too tired, or too used to “handling it” to know how to phrase a request?

• Have I ever gently asked, “What feels hardest right now?” and then just listened?
  Not fixed. Not explained away. Just listened.

• Do I assume they’re okay because they’re still functioning?

• Would I see the same situation differently if it were happening to me?

These aren’t gotcha questions.

They’re starting points.

You can ask them silently, in your own head. You can also ask them out loud—to the caregiver in your life—and then let their answers be the truth, even if it stretches what you hoped was happening.

What Real Support Looks Like in Practice

“Support” can sound vague, so let’s get concrete.

Here’s what actually helps caregivers like me:

1. Specific offers instead of open‑ended ones

“Let me know if you need anything,” puts the work back on me.

Instead, try:

• “I can come over on Wednesday from 2–5, so you can leave the house—would that help?”

• “I’m free Saturday morning. I can sit with her or run your errands. Which would be more useful?”

Give me something real to say yes or no to. And be OK if it doesn’t work out and needs to be adjusted without explanation or TMI, depending on what is shareable in the moment—or wait and see what happens next. Rollercoaster Alzheimer’s vibes here.

2. Action that matches the words

• “You’re doing so much. I’m taking X off your plate this week.”

• “I see how hard this is. Here’s when I can be there, and here’s what I’ll take responsibility for.”

• “I’ll do my best to fit into her schedule and Bubble. We support whatever is needed for her and for you.”

Don’t just admire the load. Pick up a piece of it. Or get out of the way without temper tantrums and more isolation. #ykykyk

3. Respect for our actual rhythms

We need downtime, and we need sleep.

That looks like:

• Not calling after 8 p.m. or before 7 a.m.

• Asking what times are least disruptive.

• Believing us the first time we say, “That doesn’t work for us.”

4. Listening without rushing to fix the story

When I say, “This is really hard,” I’m not always asking for solutions.

Sometimes I just need another human to say:

“I hear you. That makes sense.”

That’s it. No TED Talk. No silver lining. Just presence. Patience.

5. Checking in on patterns, not just crises

Instead of only reacting when something dramatic happens, try:

• “How has this been for you lately?”

• “Has anything gotten a little bit heavier or a little bit easier?”

Be ready to hear about the slow, everyday weight of it—not just the emergencies.

Hell, in the early days, any want of understanding would have been beneficial, instead of the selfish “you treat us badly, we hate you” vibes given.

6. Respecting boundaries the first time

If I say a visit time, outing, or plan doesn’t work anymore, you don’t have to agree to believe me.

Trust that I’m the one seeing the full picture.

None of these fixes Alzheimer’s.

None of this makes caregiving easy.

But it does something vital:

It tells the caregiver, “You’re not carrying the emotional reality of this by yourself.” You didn’t ask for it, but you stepped up knowing no one else would or could, and because you were asked to by the only one that counts… the one in memory care.

If You’re the Caregiver Reading This

You might be where I am:

• the “strong” one

• the default one

• the one who is always there

You may have been hurt by people who didn’t see the full cost of what you’re doing.

You may feel:

• protective

• guarded

• tired of trying to explain

Same.

I’m not asking you to open up to everyone.

Not everyone has earned that.

What I am saying is this:

• You’re not wrong for feeling invisible.

• You’re not “too much” for wanting to be seen as a person, not just a role.

• You’re allowed to tell the truth, even if it changes how other people see the situation.

This series—“This Shit Is Bananas”—is my way of practicing that in public.

Not to blame, but to name.

Not to attack, but to invite.

Invite what?

• Better questions.

• Clearer conversations.

• More honest support.

If You’ve Been on the Sidelines

If you’re reading this as a friend, relative, neighbor, or “spectator,” I’m genuinely glad you’re still here.

You don’t have to get this perfect.

You don’t have to have the right words.

You can start with something as simple as:

• “I’ve been thinking about you and realizing I don’t really know how hard this is. Would you be open to telling me more?”

• “I’m realizing I might have assumed you’re okay because you’re good at handling things. Is that actually true?”

• “What is one small thing that would actually make next week easier for you?”

You might feel awkward.

You might feel late.

Come anyway.

Every time someone chooses to lean in instead of look away, this story shifts a little.

Not just for me, but for every caregiver who has been carrying more than anyone realizes.

Where This Series Goes Next

Part Four is my attempt to step out of the “us versus them” box.

There is me, in the thick of this.

There is you, maybe watching from a distance, maybe wanting to help, maybe afraid to say the wrong thing.

Somewhere in the middle is a conversation we haven’t quite had yet.

I don’t know exactly what Part Five will be.

But I know it will keep asking this question:

What would it look like if caregivers didn’t have to break before they were believed?

If you’re a caregiver, I see you.

If you’re a spectator who wants to do better, I see that, too.

This shit is still bananas.

But maybe—together—we can stop pretending that means we’re powerless to change anything at all.