04: Clouds Were Gathering

October 1 to 7, 2011

Gabriela had only been home from the hospital for one week before we both knew she needed to see Dr. Wreck, her neurologist.  She was spending her days almost exclusively in bed, ruminating.

She ate and drank only what I brought to her. She wasn’t bathing, brushing her teeth, combing her hair, or even dressing for the day. She had stopped participating or even having a desire to participate in the world around her, no matter how small that world had become. Out of the house events were rare.

I wasn’t working much; leaving her alone was almost out of the question. I wasn’t concerned that she would attempt suicide but concerned because she had started to be careless about herself.

One afternoon I needed to run in to work. As soon as I’d parked my car I called Gabriela to see how she was doing. Had she eaten?  Had she had anything to drink, taken her medication? She almost always flew into a rage when I asked these questions, but I always asked anyway.

On this particular day she answered yes to all three questions and asked me to “just leave her alone!” She hung up the phone.

I took a deep breath and tears welled in my eyes.  I just moved forward, trying to stop the strain I could feel in my throat. The feeling of the impending dam bursting and the flood gates opening … I had become accustomed to the feeling that I was always so close to losing it, just curling into a ball, and crying endlessly and giving up.

In less than five minutes my phone rang, it was Gabriela.  I looked at the phone and thought for a minute I wouldn’t answer. But I picked up the call knowing that she just might need me.

“Mom, I don’t want you to panic because I’m freaked out enough. I need you to tell me what to do.”  It was about 3:00 PM and I was walking across the parking lot toward my office. I stopped.

“What happened?” I asked calmly, panic building inside.

“I took my morning meds at 11:00 AM, and now I just took my night time meds.”

She shouldn’t have taken those for eight more hours! “Call 9-1-1,” I instructed, seemingly without emotion. Internally I could feel my stomach turn, my blood pressure rise, and my lips starting to tingle.

“Well are you sure, do you think it’s that big a deal…”

I cut her off, “Call them right now, don’t argue!”

I hung up and called her neurologist. But I sure as hell wanted to know that if needed, the paramedics were right there.

Gabriela called back while I was on hold for Dr. Wreck.

“I called 9-1-1, they are on their way.” She casually tossed out the idea, “Don’t you think we need to call the Doc?”

“I’m on hold with them right now, I’ll call you back when they’ve answered.”

I hung up on her.

All resolved well.  The paramedics talked to Gabriela and left and the doctor adjusted the timing of her medications for the next day.

This was just one more item to add to the list of daily routines that had fallen by the wayside. One of the many reasons my work day had now become more and more restricted. Work was a one hour drive from our home and in my mind that meant that if there was an emergency, like the medication, or something worse, I was one long hour away.

Gabriela and I decided that together we would make a call to her neurologist’s office and see if we could get the follow up appointment moved up. Dr. Wreck’s assistant was nice, but explained that the doctor was very busy and had no openings; that she (Dr. Wreck) felt that Gabriela would be fine until the scheduled appointment three weeks in the future. We both explained that things were not going well at all and asked if we could at least be put on a cancellation list. That was agreed to.

As the next week passed I had completely stopped working. I spent my days watching over Gabriela and looking for help for her. I spent hours on the Internet searching, and just as many hours talking to behavioral health facilities trying to find out what, if anything, I could do. I called our family physician to try to get emergency psychiatric help. I searched for mental illness advocates. I searched for any programs that directly or through referrals might be able to help. I failed.

Everyone was “very sorry.” I was sick of hearing how sorry everyone was that they had no advice or recommendations…. that the only possibilities were more than a month out. We needed help now!

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  • Nancy J.

    Well done. As a parent, I would have questioned the doctor as to why you needed to wait a full month to go see her or that you would NOT wait, but insist on seeing her sooner. Also, all doctor’s have emergency appointments. Her calendar should have accommodated your needs, not hers. I would have seeked another Neurologist’s help. No one seems to understand when a parent needs help now. Everyone always seems to be caught up in their own dramas.

    Why didn’t the doctor discuss what they had observed Gabriela doing in the hospital with you privately and how this medication was going to help Gabriela cope? It sounds like she went into a depression from the medications she was taking and this also should have been monitored by her physicians or at least told you this was a side effect of the medications. I hate doctors who seem uninvolved with their patients. This is a human being who needs their medical care and help. Sometimes they treat patients like they are not human but just an object with no feelings or even a brain.

    • bshufani

      There are many things you said that I completely agree with. But there are a few items that I need to clear up.

      Typically the follow-up appointments after a monitoring are set at one month, this gives the patient enough time on the new medication or new dose to evaluate for the doctor how everything is going. I do agree that when Gabriela and I felt there was a growing problem her doctor should have made time to see her, but she didn’t and wouldn’t. There was also no immediate availability to see another neurologist, specialists typically are months out on scheduling, and my daughters case was to complex to head into ER for whoever was on staff.

      I believe the doctor didn’t discuss Gabriela’s behavior during her stay at the hospital because it wasn’t what she were interested in. The doctor was looking for seizure activity only. Also, no new medications were introduced at that time, only changes in dose and timing.

      I agree, sometimes doctors forget that their patients are people.