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Today was another impossibly frustrating day trying to care for my mom.

Not because of her dementia. Not even because of her colitis.

Because of her health care system.

My mom has suffered from IBS for years and now struggles with colitis. Over the last year, she has had several significant flareups. Some have been severe enough to hospitalize her.

A few years ago, when this condition first took hold, I found her curled up on the bathroom floor like an infant. She was terrified. She thought she was going to die.

So when I say she is having another flareup, I don’t mean she’s having an upset stomach. I mean something is wrong.

Her primary care doctor knows this. He knows her history. He knows how quickly these episodes can become serious. And he has specifically told me: When this happens, contact me directly. I’ll take care of it.

That sounds simple.

Except when I need to reach him, I can’t seem to get directly to him.

Every phone call goes through triage. And while I can message her care team through the portal, those messages are typically reviewed and answered by other members of the team.

And every time, I explain the history again: her condition, the recurring flareups, the hospitalizations, the medication, the conversation I’ve already had with her doctor.

And then come the questions.

How long has she had diarrhea? How often? Any blood? Any fever? Would you like to schedule an appointment?

No.

I would like to do what her physician told me to do. I would like you to tell him she is having another flareup.

But the system doesn’t seem designed for that. It’s designed to triage an episode.

It isn’t designed to remember a person.

Today, after several calls, I finally reached someone who seemed to understand. She agreed to contact my mom’s doctor directly and told me she would call me back with his response.

Progress.

Then I missed her call.

The voicemail told me to call back. I was given the general Kaiser number. No extension. No direct way to reach the person who had just helped me.

So I called back.

And where did they send me?

Triage.

Back to the beginning.

Explain the diarrhea. Explain the history. Explain the doctor. Explain what had already happened. Explain that someone had called me. Explain that I simply needed to know what the doctor had said.

Around and around we went.

At one point, I was told that if I chose not to go through triage, that was my choice.

But I’m not refusing care.

I’m trying to access it. I’m trying to follow the instructions her own physician gave me.

Meanwhile, my mom has had diarrhea for more than a week. Every episode takes something from her: fluid, strength, weight.

And she doesn’t have weight to lose.

That’s the part that gets lost somewhere inside all these phone trees and workflows and protocols. There is a person at the center of this.

My mom.

And there is another person trying desperately to care for her.

Me.

Eventually, I did hear from another doctor.

It turns out my mom’s primary is out of the office today. The person I had spoken with had gotten my message through. A covering physician picked it up and reached out to my mom’s GI care team for guidance on the medication. Her primary will be back tomorrow.

I was relieved.

And grateful.

Someone had listened. Someone had acted. The information had made its way to someone who could help.

But I was also struck by how difficult it had been to know that. How much explaining, calling, transferring and starting over had happened while somewhere inside the same system, people were actually working on my mom’s care.

The care wasn’t absent.

The continuity was.

And as her caregiver, I was left trying to bridge all those disconnected pieces.

Today I filed a complaint with Kaiser Member Services. Maybe it will matter. Maybe it won’t.

Kaiser is enormous. I’m one caregiver filing one complaint about one broken process inside an impossibly large healthcare system.

But this isn’t really about one frustrating phone call. It’s about what happens when a healthcare system becomes so consumed by its processes that accessing the people who know the patient becomes an ordeal of its own.

My mom’s doctor and I already have a plan.

The system makes that plan incredibly difficult to carry out.

I can manage medications. I can advocate. I can make the phone calls. I can clean up the messes. I can sit beside her when she’s scared. I can keep telling her she’s safe.

I can hold my mom through so much of this.

What I shouldn’t have to do is fight this hard just to get the right information to the right person.

Today, the very system that exists to help her has left me feeling incredibly helpless.

And I just want to scream.

There are caring human beings inside our healthcare systems. It shouldn’t be this hard to reach them.