“Dr. E Doesn’t Run This Center”
Our dialysis story — chapter 41
Three days ago, I wrote about a confrontation with the dialysis center regarding a change in Ben’s chair time from 11:30 am to 10:00 am, which does not work for us. The nurse who informed me of the change said I had to speak to the center’s administrator. I called Boss B twice, left messages, and wrote a note that was placed on her desk, but she didn’t respond.
On Monday, Ben’s nephrologist, Dr. E, was at the center. Ben explained the chair time situation to him, and he assured Ben that he would talk to the administrator and Ben’s chair time would not change.
When I delivered Ben to the center this morning, a nurse called me to the reception window and said that Ben’s chair time was changing, but rather than 10 am, it would be 10:45.
I asked:
So, the administrator is afraid to talk to me?
The nurse smiled and tactfully said:
Well, let’s just say that she’s busy.
I replied:
I told her in my messages that changing Ben’s chair time would disrupt my work schedule and my clients' schedules. Ben’s doctor was here Monday and assured Ben that his chair time would not change.
The nurse leaned forward and almost whispered:
I understand, and I’m sorry, but Dr. E doesn’t run this clinic. The decisions come from our district office. Believe me, I fought hard to have Mr. Ben’s new time be 10:45 rather than 10:30. It’s the best I could do.
My anger was boiling.
This is the third change. The district office does not know us or our situation nor do they care about us. I appreciate that you fought for a better chair time for Ben, but we are being jerked around, and that means I have to jerk my clients around. It’s disrespectful and it’s not right.
She smiled sympathetically but said nothing.
Ben came out of the treatment room, and we left.
We have no choice but to accept the new chair time unless we try to move him to another treatment center, and there’s no guarantee we can get an 11:30 chair time anywhere else.
Ben suggested he could use a transportation service provided by his insurance. I’ve spoken to the dialysis patients who use those services, and they say the vans are nearly always late and pick up several patients, so there are many stops. Two patients told me that using a transportation service adds one to two hours to the four hours of dialysis. That means five or six hours away from home. I will not do that to Ben.
We’re stuck and I’m pissed.
I am nothing to these people other than a driver who delivers Ben and the person who keeps up with his medications, regulates his diet, and worries about his lab results. My schedule, my work, and my life don’t matter.
I don’t matter.
I’m tired of being treated like nobody — not by Ben but by everyone in his medical sphere. Caregivers are expected to be invisible and mute unless the medical staff needs us for something. We do the work, but we don’t matter.
No wonder caregivers get burned out and crash.
Now, excuse me, I have to call two clients and jerk them around.
© Dennett 2024
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