The end of the year holidays and winter cold were some of the hardest times for me and my family the last handful of years. My mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years. In that time period, very short housing stints aside, she primarily lived in a car.
I’d do my best to spend Christmas Day with her, regardless of her immediate living situation. I’d drive down to Bakersfield or Fresno from the Bay Area, put her up in a hotel room and take her to Marie Callender’s for a Christmas meal, her preferred choice. The following day, I’d usually take her shopping for some clothes and undergarments, if need be. She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would typically disappear within months. She’d claim people would steal them from her car or from the places she was living in. I figured that she probably threw them out, as she routinely did in the past, upon believing that the clothes would become contaminated with toxins or spoiled by evil spirits.
This is what the holidays were for me. There was no real respite or joy from my time off work. It was just a sad reminder of our inability to get any care or treatment for my mom’s serious mental illness. I was planning on doing similar last year for Christmas. I was mentally preparing myself for the trip to Bakersfield the next day, when my uncle called to tell me that my mom was in the hospital with respiratory problems.
I got what information I could out of him. He was always short on information, in his usual enabling fashion. He covered for my mom and had been showing signs of deteriorating mental health himself the last couple of years. Like my mom, he denied she even had a serious mental illness.
The attending nurse told me, unsurprisingly, that my mom’s glucose was high and that my uncle was stubbornly refusing her insulin. Both my mom and uncle believe that it’s a poison and dangerous for my mom. The nurse explained that her high glucose was exacerbating her lung infection. I told the nurse that I would be there the following day, on Christmas, and, as her next of kin, I wanted them to begin administering her insulin.
When I arrived the next afternoon, I wasn’t prepared to see my mom on a respirator and essentially lifeless. My heart sank and I could feel my blood pressure and temperature immediately rise. As soon as I could, I talked to the attending nurse about her status. The nurse, a different person than the one I talked to the day before, informed me that her glucose was over 700 and that my uncle was still denying her insulin! My mom’s glucose had reached the 500s various times in the past, but I didn’t even know glucose could get into the 700s. I was in disbelief and fumed with indignation towards my uncle.
Aside from mentioning my uncle was intimidating, the nurse had no real explanation as to why they weren’t treating my mom with insulin, after I told her that I requested it on the phone the day before. Nonetheless, I explained my mom’s psychiatric condition and history to her, and told her to start administrating insulin immediately. Despite wanting to put my uncle through a wall, I diplomatically suggested he go home and rest. Once he left, I told the hospital staff to tell hospital security that he was not allowed to see my mother.
My mother’s condition slowly improved, once they began administering insulin. Altogether, she would be in the hospital almost a week. As the initial few days hinted, though, the whole experience, from beginning to end, would be a proverbial nightmare. The hospital would ultimately discharge my mom unsafely and prematurely, against my wishes.
My mom would slip into an acute psychotic episode and begin refusing treatment. She would begin exclaiming maltreatment by the hospital staff and say she wasn’t even in a “real hospital.” At one point, she tried to get up and walk out, although she was too weak to walk and the urine catheter was still attached to her. The hospital would eventually take her out on a wheelchair to a waiting cab. This blog was initiated primarily by that experience. From January, the post about it can be found here: Me vs. the Hospital
I formally filed complaints with both the hospital and the California Department of Public Health (CDPH). Those complaints/investigations would prove unfruitful, however, just as I imagined they would. I’ve complained to the CDPH before about a different hospital. In that case, a hospital was trying to discharge my mom without considering the recommendation of her attending physician. The doctor wanted my mom to start taking insulin.
At the time, my mom was more amiable to the idea. Having cataracts, though, she was unable to administer the shots herself. I was lobbying the hospital to send my mom to an assisted living facility, where someone could administer her shots. The hospital was ready to discharge her without her insulin prescription, though. The hospital director was predictably none too happy that I had talked to the doctor at length about my mom’s care plan. Ultimately, the CDPH would find no violations in their investigation, even though it’s illegal for hospitals to discount/ignore doctor recommendations as part of their discharge plan.
This more recent investigation was an obvious joke from the start. The investigator took three months to contact me, from the time I filed my initial complaint. By then, I had already talked with one of the hospital administrators about some of the things that occurred there. I just mentioned my frustration with some of the staff’s insensitivity and the ignoring of my request over the telephone to administer my mom insulin. I didn’t want to tip her off to my complaint to the CDPH about the hospital discharge, so I didn’t mention it at all.
By the time the investigator contacted me, I was sure the hospital did what it had to do to cover its tracks. To top it off, the investigator sounded meek and unprepared for the job over the phone. She seem entirely disinterested in what I was divulging to her and didn’t once ask me to clarify or repeat anything I had said. I didn’t see how she could have been taking adequate notes.
By the time I was informed over the summer of the findings, a good six months after the incident, I wasn’t at all surprised that the investigator found no violations. Out of it all, I just received some assurance by the hospital administrator that she would work on some additional training for the staff and talk to the doctor about my concerns. Little consolation and just more proof to me that the health care system and government collude to provide inadequate and inhumane care for the people who need quality care the most.
Christmas is tomorrow and as tough as most of this past year has been living with my mom, I find some peace and consolation that she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is. It hit freezing temperatures
for the first time this winter this past week. Letters my mom would write to me exclaiming how cold it was living in the car and asking to live with me have given way to complaints that the house is too cold at 65 degrees. “We need to watch our heating bill.”, I’ve told my mom just about every day this week. “You haven’t thrown away your jacket, have you?” I said yesterday, jokingly. “If not, put it on.” The Christmas tree definitely brings her some solace, despite the ongoing “spiritual attacks.” It’s the first tree she has had in around ten years and her bedroom is more cozy and better decorated than mine. For me, my blood pressure is the best it has been in years. For these things, we are grateful.
benevolent neglect 