Though last weekend is behind me, I am still rattled. Not so much by what happened—or didn’t—to Robert, but by what happened, by what could happen, and how things are handled.

I was in my Friday night position, around 9:00 PM, situated in front of the television, watching still another streaming show, (so far over 130) when the phone rang. The caller ID was that of the nursing home and it was way too late for the Covid-robo-call-update.

Deep breath. Hello.

I was informed that “everything is alright,” but…however…throw in the conjunction of your choice that will make you take pause and gulp.

“He had a blister on his big toe and a Doppler showed there is no circulation to the foot.”

Robert was sent to the ER, alone, to a hospital of my choice. A man whom I no longer recognize, who I do not believe could speak for himself, at around midnight. Of course, when you know this is happening you do not rest well and your mind teeters on the cliff between rational thinking and anxiety. I checked my phone during the night; there were no messages, no calls. But then, no phone ring, but a message at about 8:30 AM, which I returned to someone in the hospital’s non-medical staff who wanted to update me. They were sending him back. They were waiting for transportation since 4:30 AM.

Robert was able to tell this woman to call me and he told her my name. He knew his date of birth. Well, that was good. They wanted him to follow up with a vascular surgeon.

No one called me to tell me whether he had arrived back. Or had left. Or what the real story was. That was left to me, the middle-woman. It progressed.

Hospitals and physicians now are using “patient portals” through which one can obtain, immediately, information about tests and results as soon as they are available. By Saturday morning there were blood panels and interpretations and the like, popping up on my phone. Most results seemed to be fine. A few blood tests seemed to be out of the normal range. OK so, what was the bottom line? Monday morning another test result popped up indicating a diagnosis, planted at the very bottom of the page of ACUTE PERICARDITIS. My eyes bugged out and I swung into action.

Phone calls to the ER: a PA told me that if I had any questions about the report I should “bring it back to the hospital for clarification.” Not gonna happen, I said.

While Robert was safe in his bed, I called the main switchboard of the facility, the nurse on the floor, left messages on machines, spoke to anyone I could. “The man has an acute heart infection and no one here seems to have the report or even knows.” People began to get defensive. Fingers were pointed. The doctor on staff had left five minutes ago. I left message after message and no ne returned my call. I emailed the social worker, the person in charge of recreation but my messages were hitting the wind; there was nothing they could do. No one at the facility had the report that I had. I faxed it to them and it caused more confusion.

The PA at the hospital then called to tell me that she spoke to the doctor who was in charge of Robert’s case, and that she would call me and she did. A young woman was at the other end of the line, in the hospital, and she seemed to have the info I needed. I learned that Robert was seen by a vascular team, that he did NOT have an indication of pericarditis: his feet were warm, the Doppler was normal. This she repeated several times as if to replay a tape.

OK, so the reports recommend that he return to the hospital to follow up with a vascular surgeon. I do not make the appointments, how do we do that? She gave me the name of a doctor whose office was not in the hospital.

Back to calling the facility, leaving messages, after I left word for the doctor, and providing the info, she told the nurse to send Robert back for treatment, treatment which now seemed unnecessary.

It was all a very frustrating, anger-provoking fiasco of miscommunications. And most of the people I needed to speak to were unavailable. So I left more messages: Don’t send him back to the hospital! Now they say he is OK!

I was able to finally get in touch with the nurse on the floor and have an over-the-phone head-shake in unison. From him I learned that the next day a vascular surgeon was going to see Robert in the facility. I didn’t even know this was possible.

No one followed up with a call. Nope, not once. And so many hands and arms were acting independently.

There was a man in the bed who sent for testing and I get it, you have a machine that gives a report of “no blood flow” and that is serious stuff. It was ass-covering time. That was the right thing to do.

During this time I was at home conjuring my own diagnosis: He had two J&J vaccines and they possibly had caused this known heart issue. A heart issue that wasn’t. I was all set to demand my honorary medical degree.

Possible test artifact, said the doctor who treated him in the hospital. It can occur if you move. They should send him back if he complains of chest pain. But Robert never complains. Yet someone in the facility said he did.

I don’t know what the heck happened but I do know when I saw Robert a few days prior he wasn’t very responsive, I left with a funny feeling. One of those Madeline-Miss Clavel moments when the gut speaks. And I do know that when you are a caregiver you live in the land of hyper-vigilance, waiting for that other shoe to crash to the floor, taking you with it, pulling you down, down, leaving you on your own to claw your way back up and out of that black hole of fear.

I have bought into the adage, the self-serving and self-protecting words: No news is good news.

Because his heart was deemed to be broken.

And mine already was.

📌The series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

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