Amy Elisabeth L.

The Wizard of Assisted Living: When “Care” Becomes Someone Else’s Convenience

Let me tell you something about taking care of a person with Alzheimer’s:

Nobody prepares you for the fact that sometimes the hardest part isn't the disease itself.

Sometimes, it's dealing with the ridiculous “solutions” and “recommendations” handed down by medical professionals and executive directors who seem more interested in solving their own problems than protecting the person in their care.

A little background.

As many people know, my mom lived with me for six months.

I picked her up from her now-ex-husband one day, and by the second night, I knew something wasn't right. We didn't have much of a relationship at the time, so initially, I wasn't sure whether what I was seeing was simply my mom being my mom.

Then I learned she had been diagnosed with early-onset Alzheimer's.

I tried.

I really did.

But picture this:

I work full-time.

I live with my cousin, who had never had any kind of relationship with my mom.

And I have two rescue dogs who are basically one open door away from sprinting down the street after a rabbit.

I set up brain-stimulating activities for Mom before starting my workday. I put signs around the house to help her navigate. I even arranged “playdates” with her friends so she could socialize and I could occasionally get a break.

After six months, I had to be honest with myself.

I needed to protect my own mental health, and Mom needed more stimulation and support throughout the day than I could realistically provide while working full-time.

So, I moved her into assisted living.

At first, things were fine.

Mom was still mobile. She fed herself. She dressed herself. She socialized. She walked around without a significant fall risk. She made friends.

This was pretty standard assisted living.

Then Creepy Senior entered the chat.

At first, he and my mom were friendly.

Then my mom rejected his attempts to become more than friends.

And that's when things changed.

He became a full-blown, relentless stalker.

Here's the part that made this even more infuriating:

He is cognitively intact.

He isn't in assisted living because of dementia. He is there because of physical limitations.

He knows what he's doing.

And he was choosing to harass my mother.

I reported it.

My mom reported it.

Staff reported it.

Other residents reported it.

And what was the facility's brilliant solution to protect my mother from this behavior?

They moved my mom to the third floor.

Because, of course.

Move the victim.

Problem solved.

Except, shocker, it wasn't.

Not only did the move create additional disorientation for my mother, but Creepy Senior kept finding ways to come around.

So the facility tried solution number two:

Put them on different meal and activity schedules.

Still didn't work.

This guy was so determined to be a nuisance that he eventually started making allegations that staff had physically pushed him, causing him to fall out of his wheelchair.

Except that's not what happened.

He fell while trying to speed-wheel himself down the sidewalk to get to my mom, who was out for a walk with one of our favorite recreation staff members.

When solution number two failed, the facility came up with option number three:

“Maybe we should move her into Memory Care.”

Excuse me?

No.

That isn't a solution.

That's moving my mother into a secured environment because the facility doesn't want to manage a problem involving another resident.

You're not solving the problem.

You're moving the person you're supposed to protect.

I didn't back down.

As most people who know me will tell you, I'm competitive.

And I really don't like to lose.

Especially when I'm fighting for something I believe is right.

So I voiced my concerns to the executive director.

I called corporate.

I called the Ombudsman.

I called the local police.

Eventually, I was invited to sit down with the executive director, the director of nursing, and someone from corporate.

Lions and tigers and bears, oh my!

They presented their latest idea.

Because they were short-staffed on weekends and couldn't always keep an eye on Creepy Senior, Mom could “assist” in the Memory Care unit.

She could help with activities.

Attend events.

Basically, she could spend her weekends in Memory Care.

Except that was not what I agreed to.

The first weekend this plan was implemented, I visited.

I found my mother in Memory Care, alone, wandering around and extremely stressed.

This was not the plan we discussed.

This was not what I agreed to.

And this was not acceptable.

So I made another call.

This time, I called the New Jersey Department of Health.

The state investigated.

And two weeks later?

The big, powerful, wonderful Wizard of Assisted Living was fired.

It turns out state law requires certain incidents to be reported within 24 hours.

Apparently, the executive director had a stack of reports sitting on her desk.

And she wasn't doing anything with them.

Suddenly, the Wizard lost her powers.

Which brings me to today.

There's a new director now.

I'm sure she was handed a file on me with a giant warning label attached.

Hopefully, somewhere in that file, it says:

“She reads people very well. She asks questions. She doesn't scare easily. And she will not back down when she believes her mother is being mistreated.”

Because that's where we are now.

I recently received a call from my mom's primary care doctor, who works with the facility.

Apparently, he had noticed that Mom was “a little more confused than normal.”

And his official recommendation?

Move her into Memory Care.

“Some people without brains do an awful lot of talking, don't they?”

Scarecrow had a point.

Because the timing of this recommendation is, well...

magically convenient.

Apparently, because someone handed my mother her morning medication and she didn't immediately know what to do with it, the answer is suddenly:

Lock her in Memory Care.

Absolutely not.

My mom can walk.

She feeds herself.

She dresses herself.

No, I can't guarantee her shirt won't occasionally be inside out and backward.

But she's dressed.

She enjoys spending time with her friends.

She participates.

She socializes.

She still has meaningful engagement with the world around her.

And putting a relatively high-functioning woman into a locked care environment surrounded by people in much later stages of dementia isn't automatically “care.”

It can be culture shock.

It can be profoundly disorienting.

And from everything I've learned through conversations with dementia specialists and other caregivers, unnecessary moves can create significant distress and disruption.

So no.

I'm not going to accept a recommendation simply because it comes wrapped in a doctor's title.

I don't care how many degrees you have after your name.

I don't care how many acronyms you can put behind your signature.

And I certainly don't care how impressive your office looks.

You don't get to use a doctor's recommendation as a broom to sweep the facility's liabilities under the rug.

You don't get to make the caregiver absorb the consequences of a system that doesn't want to address its own problems.

And you don't get to convince me that moving my mother is the best option simply because it's the easiest option for everyone else.

I've fought this battle before.

I fought the last administration.

I involved corporate leadership.

I involved the Ombudsman.

I involved law enforcement.

I involved the state.

And eventually, the state found serious enough problems that the person running the facility was removed.

So if this new team thinks I'm going to fold because they've wrapped the same old solution in a doctor's recommendation?

They're about to learn something about this particular caregiver.

I may not have a medical degree.

I may not have a wall full of credentials.

But I know my mother.

I know what she was capable of yesterday.

I know what she is capable of today.

I know her personality.

I know what makes her happy.

I know what frightens her.

I know what confuses her.

And I know when something doesn't feel right.

I'm not asking anyone to pretend my mother doesn't have Alzheimer's.

She does.

I'm not denying that her needs will change.

They will.

And when she genuinely needs a higher level of care, I will be the first person advocating for it.

But that decision needs to be based on her needs—not someone else's convenience.

That's the distinction.

Care should be about the person receiving it.

Not the facility's staffing problem.

Not a liability concern.

Not an administrative headache.

Not making someone else's job easier.

My mother's care should be about my mother.

And if that means asking uncomfortable questions, making uncomfortable phone calls, challenging recommendations, or becoming the person everyone hopes doesn't show up at the front desk...

Well.

I've already learned something important.

The Wizard doesn't actually have the power.

Neither do the flying monkeys.

And neither does the person standing behind the curtain pretending everything is fine.

Because, as Glinda reminded Dorothy:

“You've always had the power, my dear. You just had to learn it for yourself.”

Maybe that's the real lesson in all of this.

Sometimes advocating for someone you love means finding your voice when you never expected to need it.

Sometimes it means refusing to accept the easiest answer.

And sometimes it means standing in the middle of a broken system and saying:

“No. We're going to find a better way.”

Because my mother isn't a problem to be moved.

She's a person to be cared for.

And as long as I have a voice, I'll keep using it.