My Mom’s Treatment and Mental State Have Taken a Nosedive

By: Loolwa Khazzoom, Founder, Dancing with Pain

November 26th, 2008 • Patient AdvocacyPrint Print

While at the intensive care unit, my mom received outstanding treatment.  The good news is that she’s just been transferred out of intensive care, because she’s been doing so well.  The bad news is that her treatment has taken a nosedive, as has her mental state, with this transfer in units.

Following my mom’s surgery yesterday, I was preparing to come back from the hospital, but my mom encouraged me to get some much-needed rest instead.  “I’m doing great,” she said.  “I’ve been through a lot recently, and I’m getting well.”

After double- and triple-checking that she was definitely well enough to be on her own for the evening, I decided to stay put and give myself some much-needed time-out.  I called several times throughout the evening, only to find that she had been left in the recovery room from 3:30 p.m. until late at night.

While my mom made a few weird comments the last time I spoke with her that night — including an assertion that the hospital was refusing her a room and/or that the hospital wanted to get rid of her, all because she wasn’t paying enough — I didn’t think much of it. I figured she was just experiencing some post-operational confusion.

“They’re just backlogged on rooms,” I explained to her. “You’ll be given a room as soon as one opens.” “Oh,” she said. The hospital had been taking such good care of her until then, it didn’t occur to me she was possibly being neglected.

Before going to sleep, I instructed the nurse to contact me if there were any changes or urgent matters.  When I woke up, I spoke with my mom, who seemed fairly lucid. I then asked the nurse how my mom was doing and was told my mom was doing fine, “though she [seemed] a bit confused.”

I called again an hour or so later and spoke with the nurse, who assured me my mom was still doing fine.  I told the nurse I would be at the hospital in two or three hours. (I was hoping to do my laundry, being that absolutely everything in my possession was dirty by then.)

About an hour later, I called to speak with my mom again, just to let her know I was on the way.  At that point, I was informed that my mother had been gripping the telephone near her bed, saying my name over and over again, purportedly trying to call me.  The nurse thought it was really cute.  I was very concerned about what was going on and left to get to the hospital right away, dirty laundry in tow.

When I arrived, I found a woman I could barely recognize.  My mom looked like she had just escaped a concentration camp, with a gaunt face and bones jutting out of her body.  Worst of all, she was babbling deliriously, non-stop.

“I want Loolwa!” she cried several times in the middle.  “Mommy, it’s me,” I said to her repeatedly. “I’m Loolwa.”  She had no idea who I was. What’s more, she was hysterical and extremely agitated, going on about lord knows what.

As I took in the scene, I realized that my mom was not hooked up to anything (except one IV with liquid), was not adequately covered, and was essentially abandoned in the dark.  I went up and down the hall, looking for her nurse.  There were two of them.  I summoned them into the room.

I expressed my concern about the lack of attention and mother seemed to be getting, asserting that I wanted her to be in intensive care — where she could be monitored more closely and not end up in such a mental state. I also expressed concern that nobody called me to advise me about the nosedive in her condition.

I furthermore questioned the fact that there was no nutrition or medicine hook-up in sight. I asked what medicines she was being given and whether she had eaten anything of substance.  As it turned out, she wasn’t getting oxygen or asthma medication, and she hadn’t had more than a nibble of food.

I asked if her body had been repositioned recently (to avoid bedsores), to which the nurse replied, “No, because she didn’t want to be moved.”  Of course she didn’t want to be moved.  She has broken bones all over her body. She is also fucking delirious.  You move her anyway.  That’s your job.

I questioned why my mom’s leg pads (which pump up and down, helping the blood flowing her legs) were flat and not moving. I mean, what the fuck.

I also asked what brought on my mom’s delirium.  To that, the nurse replied that it may have been partly because the nurses took the catheter out, so my mom had not peed. Justification? They wanted her to start peeing on her own again.There was no bedpan to substitute for the catheter, however, and besides, my mom had just gone through surgery on her pelvis, hip, and tailbone.  How smart was it to expect her to sit up on top of a bedpan?

When they put the catheter back in, my mom peed 700 cc. Not surprisingly, she suddenly calm down. In other words, her delirium was partly from unnecessary bladder torture.

As I held my mom’s hand, I calmly and firmly began getting everything in order. I spoke with my mom’s orthopedist, nutritionist, nurse practitioner (higher up than her nurse), social worker (totally useless), surgical doctor, charge nurse, and overseeing nurse manager, and I also left a message for the patient advocacy representative. I had to repeatedly ask to speak with some of these individuals, and I had to repeatedly follow-up on making sure my mom obtained various treatments.

Finally, my mom got hooked up to everything she needed, and a “sitter” was assigned to my mom — someone whose sole job is to watch a patient closely, all day and night long.  Late at night, when my mom had been calm for a while, I left her in the hands of the night nurse and sitter.

What the hell do people do who don’t have someone there advocating for them?  I imagine a hospital can be a death trap.  In fact, one of my mom’s friends was killed by neglect in a hospital.

Where does that put us, the patients, whether we are being treated for chronic pain or some other illness?  When there are so many cases of medical neglect, how can we rest in the hands of someone else’s care?

In the case of my mom, how has this mild trauma affected her ability to heal? Among her incoherent rants, she talked about being dead, being ready to die, and wanting to die. When just yesterday, she was talking about how strong she was and how much she wanted to live.


dana boyko December 12th, 2008

Hi Loolwa: I work with your mom and was planning on visiting her with our mutual friend Rebecca when we found out she didn’t really want visitors. I totally understand what you’re going thru with regard to having to be on top of every doctor and every nurse- my mom had a head on collission last year and broke many bones and was hospitalized for 42 days after an allergic reaction. I wanted to let you know about CERF a non-profit org who issues loans, grants and assistance to craft artists. They are based in Vermont and may be able to help you and your mom thru this. Hope you are holding up and let me know if there is anything I can do.

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