Last week, I told you about the hellish experience of trying to find a suitable assisted living facility for a parent — even with a (practically) unlimited budget.

You can read about it if you want, but here’s the gist:

• When my mother-in-law’s health took a turn, we tried to care for her at home, but eventually had to make the difficult decision to move her into assisted living.
  

• I visited the most expensive assisted living facilities in Philadelphia, and they were shockingly shitty.

Ok, you’re caught up.

Our only option

I was exhausted, disappointed, and frankly, pretty damn mad.

I thought that with a budget like ours, we would have plenty of quality assisted living communities to choose from for Judy’s new home.

After reviewing over a dozen facilities, we chiseled down our list to just two.

But here’s the infuriating part—

Narrowing our options down to two facilities wasn’t an exercise in seeking added benefits. It was an exercise in avoiding severe deficiencies. 

We eventually settled on a facility which, for the purposes of this article, I will refer to as The Community — a luxury assisted living company with nine facilities across five cities.

🏊 It had an indoor pool.

🎬 It had a movie theater.

📚 It had a library.

🍷 It even had a bar.

And notably for us — it was the only facility that offered two-bedroom apartments, which was important since my husband and I wanted to frequently visit overnight.

But, like every other facility I visited, it had no communication technology for resident advocates to be transparently kept informed.

But the care offering seemed acceptable:

With all the stress we had endured caring for Judy over the previous six months, the relief we felt finally making the decision to leave her in the care of trained professionals was intoxicating.

That relief was horribly short-lived.

The rent in Hell is $10k per month  

Not long after Judy’s initial onset of dementia, doctors prescribed new medications which stabilized her cognition quite well.

By the time we moved her into The Community, her cognitive symptoms were just a little bit of confusion and forgetfulness — not hallucinations or delusions.

As long as she took her meds, ate well, and had social stimulation, she was very close to being back to her old self.

With all of this in mind, we needed her care plan to include:

• Administering her medications

• An escort to the dining room for each meal

• Reminders and some assistance with bathing

• Assistance with choosing appropriate clothes for the weather

• An escort to activities

This was in addition to standard services included in the base rent, like food, housekeeping, and laundry.

We were informed our requested services would be a “Level 3” care plan (whatever that means).

The price for all this?

$10k per month.

Yikes.

But Judy had just enough income to cover it, and we wanted the best possible care for her, so it seemed like the right decision.

It was a disaster from day one

We extended Judy’s at-home caregiver’s employment by a couple of weeks to help Judy transition into life at The Community.

And it was she who first reported the neglect within days of Judy being there.

Judy wasn’t always receiving her medications, and at times, was even being given the wrong medications.

We leapt into action, and requested an immediate meeting with The Community’s Executive Director.

We also asked for a log of the medications that had been given to Judy so we could take it to her doctor and find out if she was in any danger.

We called and called. The Executive Director’s voice mailbox was full. Emails went unanswered. 

So we got in the car and showed up at her office door. 

Since she couldn’t ignore us once we were standing in front of her, she spouted the appropriate lip service, apologizing for the errors, and telling us that she would look into the problem.

But the logs? Well, those don’t exist. Apparently. 

To this day, I don’t know if they truly don’t log medications, or if they just didn’t want to give us those logs. 

But she told us they don’t log medications.

And she also said that we should direct any concerns about Judy’s medications to the nurse on duty.

WTF — the Executive Director was deferring responsibility to an hourly employee.

My brother-in-law, who lives closer than we do, began showing up daily, around meal times and med times. 

It was more of the same.

Judy’s medications were missing, late, or wrong — and to top it off, she wasn’t being given meals regularly. Every time he was there, he had to chase down staff to give her food and vital medication.

The excuse they made for Judy’s neglect was that they were under-staffed — every time.

So I hopped on LinkedIn, and looked up the company’s VP of Clinical Operations & Compliance. ✊

I wrote him an urgent message explaining what was happening, and requesting an immediate call.

But he never responded to me

Instead, I received a call from the Regional Clinical Director. 

Just like the facility’s Executive Director had kicked responsibility down the ladder, so had the VP of Clinical Operations & Compliance.

I demanded a sit-down with the Regional Clinical Director, which I attended with both my husband and my brother-in-law.

By this point, I had begun keeping a record of all the instances of neglect that we witnessed, so I sent it to her for review before our meeting. 

We were not f*cking around.

We arrived at the meeting, and were shocked when the Regional Clinical Director behaved like a petty teenager. 

We asked about her plans to address the chronic under-staffing, and she simply threw her team under the bus.

She claimed that when she was doing their job, she was able to serve far more residents with far better accuracy. 

There were no plans to increase the staffing levels. 

In her eyes, the staff’s complaints about being short-handed had no merit. They were just not as talented as she was. 🙄

Well — whatever the issue was, it had to be resolved immediately. Our mother’s health was declining rapidly as a result of their negligence.

So we made a deal— 

Until we could be sure that the clinical operations were back on track, the staff would text me a photo of the pills in Judy’s hand every time they administered a dose.

One simple action would verify:

1. Her meds were given on time

2. And that they were correct 

The Regional Clinical Director agreed to this temporary measure to regain our confidence, and asked for 24-hours to make sure this new policy was communicated to the entire team.

—

❌ I never received a single medication text message. 

Three days later, I moved into The Community.

And nothing could have prepared me for what I was about to experience.

The not-so-undercover operation

When I arrived, Judy was in such a delusional state that she couldn’t find the front door. 😥

I was shouting to her from the hallway, listening to her wandering around the apartment, opening closets and bathrooms, unable to follow the sound of my voice.

Once I got inside, I was stunned. The apartment was filthy. 

But more importantly, Judy was starving. It was 3pm, and she hadn’t had lunch. She had lost a ton of weight, was very frail, and was having trouble walking.

So I immediately took her to the dining room, where I was told there was no food. 

What in the actual f*ck.

Meals were supposed to be available every day 7am - 7pm, but a sheepish staff member who looked about 12 years old said they wouldn’t be ready to give Judy anything until dinner service started at 4:30.

So l ran out to get her food, and then hunkered down. 

I was not going to leave her side until I was confident she was safe.

Over the next 10 days, the neglect I witnessed probably would have put her in the hospital (or worse) had I not been there to intervene.

When I tell people that I “went undercover in an assisted living facility”, they comically imagine me dressing up like one of the Golden Girls and blending in.

But what actually happened was far more sinister.

I never planned to be “undercover”. 

But no one was taking care of Judy –ya know– the thing we were paying them $10k per month to do.

So they simply didn’t notice that I was living there.

In the 10 days that I spent living at The Community, not once did anybody:

• Escort Judy to the dining room for meals

• Offer Judy a shower or any help with dressing

• Provide any sort of housekeeping or laundry

• Bring Judy to any activities

Due to her neglect, Judy had devolved into severely incoherent and paranoid dementia.

I spent my time chasing down food and medication, and doing my best to comfort her.

And I was recording f*cking everything. ✍️

We weren’t alone

I began connecting with children of other residents, and found that they all had the same complaints we did.

Like us, they felt desperate, and were doing everything they could to resolve the issues with The Community, rather than having to find another care facility and go through the moving process all over again. 

Most importantly, we validated each other.

One of them shared an email with me that had been sent from the former Culinary Director (who quit about a month before we moved in) to the top dog — the President of The Community’s National Holding Company.

Quotes from this email include:

And quite shockingly:

I quickly realized that this company had an absolutely criminal culture problem, and they should never be trusted with the responsibility of anyone’s care.

I began the process of moving Judy out — right under their nose.

This is far from resolved

When all was said and done, I had recorded 50 pages of neglect by The Community.

And if you’re wondering what I did with that document, it was promptly sent to the Pennsylvania Attorney General. 

The AG has yet to contact me.

The Community is still operating. Their Google Reviews are heartbreaking.

Since leaving The Community two years ago, Judy has been living at a different care facility (the other one on our original list of two).

It’s almost as expensive as The Community. She’s in their memory care unit. She was never able to re-stabilize her cognition after her neglect at The Community. 😔

A friend or family member visits her almost every day.

She’s being given her medication. She’s being fed. And she’s safe.

But she’s not happy. She’s not enriched. She has no purpose.

The facility where she’s currently living just hired a new Director, who has a proclivity for not returning phone calls…

And there is absolutely no platform or system to keep us updated on her care.

We’ll see.

—

Are you dealing with a loved one with dementia, or in assisted living? 

I’m here for you. ❤️

Reach out anytime for a chat or a drinking buddy.

Cheers! 🍻

-Kristin :-)

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