There’s no shrugging in caregiving

Today was supposed to mark a turning point.

Every business has to reach and maintain the heart of its customers or risk breaking the relationship.

After three years of patchwork care, including rotating aides, last-minute cancellations, and more “emergencies” than any system should reasonably absorb, we made the decision to move my dad from a piecemeal approach with two agencies into full 24-hour care with a single new agency. A new era. More structure. More reliability. Less chaos.

That’s the hope, anyway.

Because this is Parkinson’s. And as my dad’s needs have progressed, so too has the complexity of his care. What used to be manageable has become something closer to a full-time orchestration, one my sister and I have been conducting while slowly losing pieces of our sanity (and, at times, our hair).

We aren’t asking for perfection. We were asking for consistency. Competence. Communication. Safety. The basics.

Instead, what we have received, far too often, is uncertainty.

Aides calling out with no backup. Shifts left uncovered. A revolving door of caregivers, some incredible, others deeply concerning. There have been moments where people fought for our dad’s dignity… and others where we questioned whether that dignity was even being considered.

So we made this change.

At the recommendation of the new agency, we shifted from three 8-hour shifts to two 12-hour shifts. They worked with us on the cost structure, which mattered—because let’s be clear about something: We are paying a shit ton for this care. The one thing we shouldn’t have to do is teach the people we’re paying how to do their job.

And the agency fee is on top of the assisted living facility.

Let that sit for a second.

That level of investment comes with a simple expectation: Show up. Be prepared. Be present. Do the job. Above all, be trustworthy. Because that’s what this really is about. Trust. A relationship. 

This morning, that trust was tested immediately.

I arrived at 7:00 AM to meet the new aide, ready to walk them through my dad’s routine, his needs, the nuances that matter. Instead, I walked into something else entirely.

The overnight aide from our outgoing agency (let’s call them BLAH) was asleep.

Not “nodding off.” Not “resting eyes.” ASLEEP. Fully out. In another room. On a couch she had turned into a bed.

Meanwhile, my dad, who she was being paid to monitor, was alone.

Let’s pause there.

Because overnight care comes with one very clear promise: the aide stays awake. That’s the job. My dad has a safety button, yes, but the whole point is that someone is there, alert, present, ready.

She wasn’t. That was problem one. But hopefully an outgoing one.

Problem two: The new agency’s aide, let’s call them SHRUG, wasn’t there at all. No call. No message. No explanation. So I started dialing.

My new “trusted” contact: Voicemail.

Program director: Voicemail.

Overnight line: Voicemail.

At that point, I’m not frustrated, I’m furious.

Eventually, the calls start coming back. Apologies follow. Explanations attempt to take shape. I offer what I’d call “measured anger”, including clear, direct, not screaming, but leaving no doubt: This is unacceptable.

To their credit, Shrug did get a replacement there. 90 minutes late…but present. And to her credit, she stepped into a difficult situation and handled it well.

But that’s not the point.

The point is this: When you are entrusted with someone’s life, especially someone vulnerable, someone navigating advanced Parkinson’s and dementia, you don’t get to miss the first shift.

You don’t get to be asleep in another room. You don’t get to shrug. Because what’s at stake isn’t just logistics.

It’s safety. It’s dignity. It’s life and death.

And for families like ours, peace of mind so we can try to manage our own lives, is the whole reason we’re doing this. We pay a lot of money not to eliminate worry, but certainly to reduce it. To know that when we’re not there, someone else is. Fully. Present. Capable. Accountable. AWAKE. And…trustworthy.

That word keeps coming back. Because here’s the truth: no system works without it. No contract guarantees it. No hourly rate ensures it. Trust is built, or broken, in moments like this.

So now we’re at the beginning of this “new era,” already asking the same question we’ve been asking for years: Can we trust them? At some point, we have to. Otherwise, this process will consume us completely.

But that trust has to be earned. Not promised. Not marketed. Not explained after the fact. Earned.

I love my dad. I worry about him constantly. That’s not going away.

But the goal, the hope, is that with the right people in place, we can worry just a little bit less.

Today didn’t get us there.

But maybe it’s the start of a conversation we need to have more openly: about care, about accountability, and about what families are really buying when they invest in help like this.

Because it’s not just time. It’s trust. And that’s the most expensive thing of all.