The Life Beneath the Reinvention: What Caregiving Is Teaching Me About What Comes Next

I recently had one of those days that leaves you exhausted deep down to the bone.

I started the morning at the hospital around 10:00 a.m. My dad had been admitted by ambulance from his assisted living facility at 3:30am the previous morning with painful urinary retention.

Two days before he was showing signs of a urinary tract infection and I noticed some cognitive decline. I spoke to the nurse and asked for him to be evaluated. The nurse sent out a culture to the lab to confirm a UTI and told me they would wait for the cuture and antibiotic sensitivities to come back before they started antibiotics. I asked that they start a broad spectrum antibiotic to get a jump start on the infection that was already affecting his cognition. She quoted me policy. I get it. But we’ve been here before and each time ends in an ER visit.

In the ER, the catheter had resolved the retention. But the much bigger issue was still sitting there, untreated.
He has a UTI.

Not a hypothetical one. Not a “maybe.” A confirmed culture had already been done at the assisted living facility, with sensitivities pending. By the time I got to the hospital, he had likely had this brewing for more than four days. And his cognition had declined so significantly that it was difficult to even have a conversation with him. He was mumbling incoherently, nowhere near his baseline.

I asked to speak with his nurse.

She was kind. She gave me report. He was resting comfortably. They were keeping him another 24 hours for observation. Most likely discharge tomorrow. Then I asked the question that should have had a clear answer:

“What about antibiotics?”

She told me she was waiting for the doctor to do rounds. That was the same answer I had heard from his nurse the day before. And yet, there were still no antibiotics while my dad was showing progressive cognitive decline.

I asked about the culture and sensitivities that were completed from the assisted living facility. She had no documentation of it. None.

That moment said everything. This is what makes care transitions so dangerous. Details get lost. Paperwork gets lost. History gets reduced to a chief complaint with no supporting documentation of the course of the chief complaint. The patient becomes a symptom instead of a whole human being with a history, baseline functioning, disease progression, allergies, risks, and context.

The nurse apologized. She assumed that his cognitive status was his baseline. I assured her it was not. I told her he had been declining for four days while waiting for the system to do it's thing. Filling in the missing pieces the nure didn't have elevated the urgency. UTI’s in the elderly can be dangerous.

A couple of other issues were revealed that happened during his transfer of care from the ALF to the hospital ER. My dad’s DNR had not been documented. His allergies had not been documented. His history of present illness had not been effectively communicated. And instead of treating the bigger clinical picture, they were treating only the immediate presenting problem: pain due to urinary retention.

As if the rest of it didn’t matter.
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I called the assisted living facility myself and asked them to text me the culture results and sensitivities. They did. I asked them to fax it to the hospital to help expedite an antibiotic order. That happened around 10:30 a.m.

And there I was, once again, inside the soul-sucking machinery of a broken system filled with good people trying to function inside processes that do not serve patients well. That’s the part that is so hard to explain unless you’ve lived it. Most of the people in the system are not bad people. They are caring. They are trying. They are doing their best to function efficiently and responsibly and provide the best care for their patients.

But the system itself is fragmented, overloaded, inconsistent, and, sometimes, shockingly unsafe.

And family caregivers?
We become the backup system.
We become the memory.
We become the historian.
We become the medication checker.
We become the allergy alert.
We become the person standing there saying, “No, that’s not his baseline.”
We become the one making sure the right paper gets into the right hands at the right time because somehow, in a world of electronic medical records, fax machines still determine whether a patient gets treated.

Oh, and did I mention that when I first tried to communicate with the nurse about what was going on with my dad, he clicked, clicked, clicked on the computer and told me that he couldn’t talk to me without dad’s permission as he did not have Health Care Advocate paperwork on file in the system. I have delivered a paper copy of that document to both medical records and to the clinical floor at least 6 times over the past several years. My dad has been a patient there at least 12 times. I literally carry it with me in a file on my phone and a paper copy in my car for occasions like these, when such paperwork gets lost. I think it happens when system software gets updated. At least that is my best guess. But I digress.

At one point I left to get something to eat. I should have gone somewhere and had a decent meal. Instead, I went to Walgreens and bought jelly beans and chocolate. Honestly? That felt about right.

People talk about caregiver burnout as if it’s caused only by the emotional toll of loving someone who needs care. But there is another piece of it too: the constant vigilance. The hyper-alertness. The knowledge that if you do not stay on top of everything, important things may be missed.

Not small things.
Important things.
Potentially dangerous things.

I went back to the hospital just in time to catch the physician during rounds around 3:30 p.m. She told me they were waiting for sensitivities and that it would take another 24 to 48 hours. I was livid. I took a deep breath before I spoke. I let her know that I was a health care provider and was clear about how the system works and where things are broken. I explained that a culture was done 4 days ago when all this started and that I had the results on my phone from the facility. I explained that they had faxed the results to the hospital, but apparently it never got past medical records to where it needed to go so quick action could be taken.

I showed her my phone with the sensitivity results that were done at the assisted living facility. She said she would start him on an IV antibiotic right away. I told her my dad is actually allergic to drug class she wanted to start him on. The allergy wasn’t listed in his electronic chart!

I told her what antibiotic made the most sense based on the sensitivity report, my father’s history of allergies, and where he would be going upon discharge. If she gave him an IV antibiotic, he would have to go to a skilled nursing facility for treatment. He’s 90. He just wants to be home. If he was given an oral antibiotic, he could go back to his apartment in assisted living. 

She agreed to prescribe the oral antibiotic and consider discharging him in 24 hours. 

At that point, I honestly didn’t know whether to scream, cry, or laugh in disbelief ... or take a deep breath and be grateful that we finally had a plan in place. 

Why weren’t his allergies documented?
Why hadn’t anyone integrated the information that came with him from the facility?
Why was his acute cognitive decline not driving more urgency?
Why did it take a family member standing at his bedside, holding the lab results on her phone, to move this forward?

These are not rhetorical questions. These are the questions caregivers ask every day in hospitals, rehab centers, assisted living facilities, emergency rooms, doctor’s appointments, and during every handoff in between. No wonder I was stress eating chocolate and jelly beans! 

That evening, I stayed until I physically witnessed the nurse give my dad his first dose of antibiotic. It was 6:30 p.m.

After more than four days of a brewing infection.
After significant cognitive decline.
After chasing paperwork and providing missing paperwork.
After documenting missing allergies.
After pushing back on delay after delay after delay.

I was exhausted. I did not get any of my own work done. I had to cancel clients. I lost money. And I didn't give it a second thought. 

Instead, after leaving the hospital, I went to the river and wrote another story for my Caregiving Essentials book I'm working on. Because this is the work too.

Telling the truth about what caregiving really looks like.
Naming the hidden labor.
Exposing the gaps.
Guiding families around how to navigate broken systems.
Helping them learn how to best advocate for their loved ones.
Saying out loud what too many family caregivers and health care providers already know:

Care transitions are dangerous.
Not because no one cares, but because the system is not built to reliably hold all the pieces together.

So family members do it. And it costs us time, energy, peace of mind, our own health, our financial status, and our nervous system, more than most realize. Caregivers end up depleted, running on sugar and adrenaline, trying to hold themselves together while holding everything else together for their loved ones.

I know I am not the only one living this.

If you have ever sat in a hospital room wondering how you became the last line of defense for someone you love, I see you.

If you have ever had to repeat the same history five times to five different people, I see you.

If you have ever caught an error, filled in a missing detail, pushed for a next step, or stayed just a little longer because you didn’t quite trust that the system had it handled, I see you.

If you are tired in a way that sleep doesn’t quite fix, I feel you. 

Caregiver support matters. Advocacy makes a difference. Good communication is essential.
And this is why we need to stop pretending that family caregivers are just “visitors” or “helpers.”

In many cases, we are the continuity. We are the safety net. We are the glue holding fragmented care together.
And that is too much to carry alone.

Sometimes the system really is that broken. And sometimes love looks like standing there until the antibiotic that is 4 days late is finally administered.

​Here is my favorite breathing tool that always calms me down and gets me through. 

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