Gabriela

Each day I drove 30 minutes to Huntington Hospital and, after my visit with Gabriela, 30 minutes back home.

During the drive to the hospital I always felt nervous anticipation. This had been even more stressful during the first week of Gabriela’s hold, because every day I was unsure of what changes I might see in her.

I spent my time on these drives reviewing the previous day’s visit to make sure I had made mental notes of Gabriela’s condition … so that I could make a comparison with the current day’s condition. I pored over the prior day, replaying it over and over to ensure that I had covered every detail: her appearance, walking, talking, sitting, sleeping, interacting, eating, drinking, medications, what the client assistant had told me, as well as what the doctor, the social worker, other patients, and other parents had said.

Each day I brought things for Gabriela that I felt might help her in some way, even if it was just to comfort her, such as snack foods, bottled water, books, card games, shampoo, body wash, and messages of encouragement from people she knew.

The drive had become routine for me now and had become my time to get ready; after all, I would be “on” for the next couple of hours. I needed to be mentally ready and I had to be upbeat. I was Gabriela’s connection to the outside world and her way back.

By the end of the first week, the drive had become so automatic I didn’t have to think about lane changes, freeway changes, or exits. I just put the car on cruise control and went through my daily pre-visit prep.

After visiting with Gabriela, the drive home began with the update phone call to Cody. This was something that had quickly deteriorated into a form of torture for me. Cody had not visited Gabriela during the first hold at Henry Mayo, and still had not visited his daughter at Huntington, either.

During one conversation, I recall him telling me that he was going to be “very involved” in Gabriela’s life, and that we needed to put our differences aside for “the kid.” (That mantra I mentioned earlier.) I listened and then asked him, “So, can you be more specific? Can you tell me what that will look like? I want to make sure I fully understand what you mean you when you say ‘involved.’

“I don’t mean to sound bitchy,” I continued, “but you haven’t been involved in her life for so long, I just want to make sure that I don’t have a different set of expectations.”

Cody explained that he would be adding Gabriela to his health insurance plan as soon as he could, probably in December, and that he would be visiting her on a regular basis. He claimed that his commitment was lifelong; “I only have one kid ya know.”

Okay, I was fine with that theory, but the proof of the pudding would be in the eating.

After speaking with Cody, I’d call Claire. Where Gabriela was concerned, Claire got it.  Those conversations had much more significance, and were much more interactive and genuine. Claire would ask pertinent questions, and she had a wealth of information to contribute to my growing knowledge of mental illness. Those conversations were like getting plugged into a battery charger.

Once my calls were finished, I allowed myself some down time. While I was safely in the bubble of my car, I had ten to fifteen minutes to just be exhausted, to cry, to yell, to get mad as hell, or to just ask God to help Gabriela through this.

Less frequently, I tried to keep my parents up to speed on Gabriela and how she was doing.  During one of those conversations, my mother said that she and my stepfather would like to visit Gabriela.  I explained that the visiting schedule was evenings only during the week. This didn’t work for my mother because driving at night was too difficult for her. So I told her that on weekends she could visit during the day.

“That won’t work,” she snapped. “We have plans.”

I’ve never been shocked by my mother’s reactions to events in my life, or those closest to me. I’ve often said that I would much rather be a friend of my mother’s than her daughter. I have seen how selflessly she has treated her close friends; for example, if one of them is sick, she’ll make a pot of homemade soup and deliver it.  But if Gabriela or I are sick, she’ll caution us to stay away, with a terse comment such as, “We don’t need your germs.”

My mother and I have had a relationship that seems like trying to mix oil and water.  She has spent most of my life ringing her hands and waiting for my misstep or misfortune; apparently, for the pure satisfaction of being able to replay it over and over again.

I could just imagine her conversations with my sisters and brothers … “Gabriela is mentally ill, you know!”

I offered to discuss my parents’ special requirements with Dr. Duncan, and said I would let her know what his decision was.

A day or so later, I got back to my mother to let them know the doctor had approved their request for an early afternoon visit mid-week. I asked that she let me know which day they intended to visit, so the doctor could reserve the conference room for them. This was great news for Gabriela, because she adores her grandparents, particularly her Grandpa.

I had invited both my mother and stepfather into the delivery room when Gabriela was born. I was trying to build a relationship between Gabriela and her grandparents that was better than the one they had with me. It had worked and while there had been a few bumps along the road, Gabriela had established a wonderful relationship with her grandpa. As for grandma, well, there were some difficulties but there’s no question that Gabriela enjoyed a more comfortable relationship with my mother than I did.

The day that her grandparents visited they stayed for just about 20 minutes. They brought Gabriela several books and had a nice, light conversation.  Gabriela told me how nice it was to see them. It was no surprise to me that they never called to tell me about their visit.

November 19, 2011

Gabriela had been put into Huntington Hospital on a 72 hour hold, then the hold was extended for an additional 14 days, bringing the total to 17 days. What was really worrying me was that at any point, either the doctor or the insurance company could feel that Gabriela no longer “met criteria” and then could discharge her.

There is a huge difference between the definition of “acute” and being all better. Gabriela was definitely getting better but she wasn’t ready to leave, and thank God her doctor saw it the same way. Gabriela was still hearing voices, and Dr. Duncan knew that that required increasing the dose of Seroquel until the voices had been conquered.

Gabriela had initially been started on 25 mg of Seroquel, just to make sure there were no side-effects. Then she was moved to 100mg, then 150mg, then 200mg. Each dose increase included an optional 25 mg at night if Gabriela needed help to sleep, because the voices and “disorganized” thoughts were more concerning to Gabriela in the evenings.

I went to visit Gabriela after the first few increases of Seroquel. When I got there Gabriela came out of her room to greet me, and as she began to speak her head twisted with an abrupt jerk to the side, and she let out a groaning sound.

Her appearance was tousled, and each time she tried to speak her head would be thrown and her words couldn’t make their way out. This was a condition called myoclonus. Gabriela had suffered from a mild form for the last couple of years, which had caused her slight facial twitches; but now the myoclonus was BIG … so big, she couldn’t even hold a conversation.

As we stood in the hallway I’d started to ask Gabriela how long this had been happening, when Abby, the social worker, arrived and interrupted us, asking that we join her in the conference room.

In the conference room, Gabriela sat next to Abby and across the table from me. Gabriela explained to Abby, with constant interruptions from her myoclonus, the issue she was having. I tried to finish the question I had been asking Gabriela when Abby had interrupted us in the hallway; but Abby shushed me rudely, and began to talk to Gabriela about stress and relaxation being key to stopping the myoclonus.

I waited as long as I could. My ears started to burn. I could feel the blood pounding as my pressure rose.

I interrupted Abby without even glancing at her. “Gabriela, what dose of Seroquel are you on, and when did they change it?” I could feel Abby’s anger from across the table.

Gabriela stammered, “200mg, just today”.

Abby was furious! “Do you see what just happened there? Do you see what you just did”? She scolded me like I was a child.

“Yes,” I responded matter-of-factly, “I asked my daughter a question and I got the answer.” I was just as angry.

Abby stopped and looked at me sharply, mustering her most threatening and intimidating glare. I thought to myself, “Is that the best you can do?”  Her behavior was laughable.

She ended the meeting.  I immediately took Gabriela to the nurses’ station and told them the dose of the Seroquel was too high, and that it needed to be lowered immediately.

Gabriela and I sat in the day room waiting for the psychiatrist for that day to arrive. She was aggravated and I couldn’t blame her.  It’s hard enough to have epilepsy and psychosis, but add to that over-the-top myoclonus. Gabriela’s frustration was inconsolable.

The nurse on duty wanted to give Gabriela another medication to stop the myoclonus. She explained to her that if she took this new medication and it stopped the myoclonus, then they would know the cause was the Seroquel. Gabriela respectfully declined the offer of the medication to stop the side-effect of the Seroquel which had been prescribed to stop the side-effect of the Zonisamide which I believed had caused the psychosis in the first place!

I learned there really is no limit to the amount of medicating that goes on if you aren’t paying attention and just believe that the doctors know best.

The on-call doctor arrived just after noon. Gabriela and I spoke with him, and he asked softly what I felt the appropriate dose of Seroquel should be?  I explained that at 150mg of Seroquel Gabriela had had no side-effects, and that I thought they could continue with the 25mg in the evening “as needed” if Gabriela felt she needed it to sleep.

The doctor agreed it was a good call.

Some days were like that, a single event could take up the entire day.

By the time we had our evening phone call, Gabriela wasn’t having any myoclonus at all. But she was very tired, since her entire day had been spent with her muscles doing whatever they wanted, and she’d had no choice but to go along for the ride.

November 17, 2011

Claire met me just north of the San Fernando Valley for the drive over to Huntingdon Hospital, to visit Gabriela. Claire had been divorced from my ex-husband for almost a year and wasn’t quite over it yet.

As we drove we talked about how Gabriela was doing, and her improvement over the last couple of days. Claire listened with interest and asked a few questions. She is knowledgeable on the topic of mental health because she also suffers from bipolar I.

We also discussed our ex, Cody. Claire needed someone to commiserate with. I told her I was nine and a half years smarter than she was, that being the number of years I’d been married to Cody before she met and married him. We both laughed.

During the drive, Claire discovered a number of untruths that Cody had told her about his relationship with me.  I admitted that I had known about most of the fabrications, but had never brought them up because I understood that Cody needed to feel that the divorce was his idea, and that it helped him get past it. Frankly, I didn’t care.

What I learned from Claire was that she hadn’t been the reason Cody didn’t visit his daughter after our divorce, as I had thought. Claire had actually encouraged it! The truth was that it was Cody’s decision not to spend time building a relationship with Gabriela, which simply confirmed my opinion that Cody is a sociopath.

At the hospital, Claire, Gabriela, and I sat together at a small table in the day room. Claire and Gabriela were catching up on time they had missed. I watched the two of them with contentment.  They got along so well it was clear that Gabriela really did love Claire, and that Claire felt the same.

Just a few days earlier it would have been impossible for Gabriela to have a conversation, but since the anti-psychotic injection and beginning the Seroquel, the return of Gabriela to functional was at light speed.

It was such a warm comfortable feeling with this trio of strong women. What an unlikely mix, mother, daughter, and stepmother all enjoying a visit together and feeling completely at ease.

Claire and I stayed until the very last minute of visiting hours. Then she and I both took turns giving Gabriela a hug and kiss goodbye. Gabriela told us both that she loved us and asked Claire to come again.

On our way home Claire and I chatted like school girls. We talked about the visit and how Gabriela looked and how she seemed. Claire commented on the other patients on the ward, and what had happened to Gabriela, and what the doctors were doing, and what they might be thinking in regards to Gabriela and her treatment. We covered it all.

Claire laughed when she found out that she and Gabriela were taking some of the same medications. One they had in common was Seroquel. She didn’t know what the medication was used for, so I explained that it is an anti-psychotic. Claire responded dryly, “Great!” Claire has a wonderfully dry sense of humor that makes me laugh, and at that time any and all laughter was good medicine for me.

We stopped for dinner on the way home, and on top of looking like sisters and having similar voices we ordered exactly the same meal all the way down to the same glass of wine. We both laughed.

It felt great to have someone to share with who truly loved Gabriela.

November 16, 2011

Wednesday I had a mid-afternoon appointment with Dr. Duncan and Abby, the social worker. During the meeting I found, to my surprise, that Dr. Duncan had canceled the Riese petition that had been started, to which I had chalked up all the improvements I’d noticed in Gabriela the previous evening.

Dr. Duncan explained that early Tuesday morning Gabriela had become belligerent with one of the nurses, and that she had tried to hit him. As a result, the nurse had given her an injection of Haldol, a strong anti-psychotic; then Gabriela was put into the quiet room for a few hours.

I listened, stunned. I began to imagine Gabriela, who was in the worst mental condition of any of the current residents on ward 400, being asked to comply with a request that she might have perceived as threatening.

Maybe she had become violent. After all, while she was at Henry Mayo she’d scoped the place out for its weakest entrances and exits; then she’d set off the fire alarm several times, trying to break out during the commotion. She had thrown herself through a window at Huntington in an effort to escape, and again set off fire alarms. She had tried desperately to convince me to have her taken to the ER where she felt we could make a clean get away.

The movie playing in my head went like this: Gabriela, such a little bit of a thing but looking like a complete wild woman, flailing alone against the staff. Ultimately, she is subdued by three hulking bouncer types. Then Nurse Ratchet injects her with a vicious thrust of a hypodermic needle. The scene ends with Gabriela falling limp in their grasp and being carried off to the quiet room. I faded back into the current conversation.

Dr. Duncan was in the midst of explaining what had caused the improvement in Gabriela’s condition. He told me the reason she was now eating and drinking and had gotten some sleep was thanks to the heavy dose of anti-psychotic medication; this had been enough to give her a little “snap.” She was starting the process of coming back!

Dr. Duncan and Abby were both on the same page regarding protocol. Gabriela needed to be moved up on Seroquel rather quickly, 25 mg at first to make sure there would be no negative reaction. As soon as that hurdle was cleared, the dosages would be increased.

I asked what progress had been made in determining the linkage between her AED’s and her current psychosis.

I watched Dr. Duncan as his face twisted and he bobbed back and forth uncomfortably in his chair, searching for the best way to say it. “We don’t believe that there is a relationship between Gabriela’s behavioral issues and her medications,” he said at last.

He continued, “Bobbie, it is known that visual hallucinations are an indication that the psychosis is organic.”

I listened in disbelief. Should I offer that I surely remember having visual hallucinations after taking LSD?

“Well then,” I asked him respectfully, “what is your initial diagnosis?”

He cleared his throat and fumbled around searching for words, dipping his head forward much like a chicken clucking around the yard. “It’s close,” he said.

He clenched his teeth, then continued, “It’s either bipolar I with psychotic features, or schizo-affective disorder. They are very similar and it’s too early to know for sure which it is.”

I stopped breathing. I had never heard of “schizo-affective,” but it sounded damn close to schizophrenia. I didn’t ask a single question; it was all I could do not to run hysterically from the building and never, ever return.  The only thing that kept me seated was knowing I was the only person who could help Gabriela get through this.

There had been nothing in my life that could’ve prepared me for hearing a diagnosis of “schizo” -anything being applied to Gabriela.

I refused to take it in, to digest this diagnosis at all. I left it on my plate, untouched.

Our meeting ended, and what really made it surreal for me was that it was all handled so matter-of-factly by both Abby and the Doctor.

November 14, 2011

Every evening before I went to bed, I called the nurses’ station at Huntington Hospital to see how the rest of Gabriela’s evening had gone, and if there had been any changes since I’d left at the end of visiting hours.  I always asked if Gabriela wanted to talk with me on the phone. Only once had she taken my call. I could hear her breathing but she didn’t speak, and then she just hung up.

Then each morning, I called to see if Gabriela had slept during the night, if she had taken her medications, and if there was any improvement. Generally, the response from the nurse was that Gabriela hadn’t slept. She had occasionally taken some of her medications, but never the blood pressure or anti-psychotic ones. And she was still spending all of her time standing in the hallway and not speaking.

It was either that first Friday or Saturday of Gabriela’s stay at Huntington Hospital that I had met with Abby, the social worker assigned to Gabriela’s case. I wasn’t familiar with the role the social worker would be playing in this scenario.

Abby was a relatively short, sturdy Latina from Argentina I believe. She dressed business casual.

Abby ushered me into her office, which was quite small with just enough room for two chairs and a desk. Her thick accent and intense demeanor were distracting during our conversations, but I gathered that she would try to work with Gabriela and me on “after care.” During all that was going on with Gabriela, for me to even consider “after” was almost impossible. I was glad to know someone would be working with me on what to do after the hospital released her. God knows I was not equipped to tackle this job alone.

I didn’t know the first thing about finding help for mental illnesses. For weeks before Gabriela’s first break, I had tried to find mental health programs that would work for my daughter. And I’d tried again after she was released from Henry Mayo.  Each time I had run into concrete walls. The only thing I knew was that wherever Gabriela ended up, it would have to be an in-patient facility, at least in the beginning; and a day treatment facility as she improved.

Honestly, at this point in time I would have listened to any reasonable ideas. Abby collected as much information from me as she needed to get started. It was all pretty generic: insurance information, family structure, and where we lived. She said she would work with Dr. Duncan to make sure his recommendations were also considered.

Abby said she had met with Gabriela, and that Gabriela had been uncooperative and hadn’t answered any of her questions. Abby obviously thought Gabriela was being intentionally difficult. I found a little humor in this and thought to myself, “Really? She didn’t answer your questions?! She’s not fucking talking to anyone! She’s not being belligerent!”

If Abby hadn’t been so busy yammering on, she would’ve noticed the “is this a fucking joke?” look on my face, and that she had completely lost me. I was just being polite by letting her finish her lecture, because I had mentally disengaged after she made it clear she was offended that Gabriela hadn’t spoken to her.

Those first days at Huntington all seemed to run together. We had arrived on the Thursday, when Gabriela was clearly on her way to a psychotic break. Then, within 24 hours, it happened. She was on her second full psychotic break within ten days, and this one made the first at Henry Mayo seem like child’s play!

Five days later on Monday, I arrived at the hospital to find Gabriela was no longer wearing the jacket she hadn’t taken off since she was hospitalized. I greeted her warmly. “Wow, you look so much better without your jacket.” With her jacket off it was easy to see that she had lost a lot of weight.

Gabriela was still speaking rarely and, according to the staff, only with me.

As usual, Gabriela was standing in the hallway next to her bedroom door. But now as I talked to her, she wobbled, catching herself first on the wall and then on me. She looked as though she were about to collapse. I supported her against the wall, and told the client assistant I was afraid Gabriela was going to fall. The CA, in turn, yelled out to the other staff: “Fall risk!”

Gabriela was put into a chair, and because she was so weak and so out of it, there was no argument. As before, she sat with her feet raised, hovering in the air until I tucked a pillow under them so she could relax.

I retrieved a bottle of water and a snack bar from Gabriela’s locker in the nurses’ station.  I knew she hadn’t eaten but I was going to offer her food anyway. Sure enough, Gabriela took a small piece of the snack bar with her fingers and pushed it into her mouth. It was almost as though she had forgotten the mechanics of chewing food. She struggled to chew that very small piece, and choked as it inevitably went down her throat. I smiled and asked her if it was good? She quickly put another piece in her mouth, this time with more success at the chewing. She made her way through about half the bar, which was good enough for the first try.

The CA smiled warmly, as though she was saying, “Good job mom, keep it up.”

The CA that day was Violet, a warm and beautiful African woman with a great melodic South African accent. Every word she spoke was a song. She was strong, loving, and well-read.

I came to know that when Violet was working, Gabriela was well cared for. I never had to ask for updates; Violet inserted any updates that were important into our conversations. She skillfully delivered information in a way that didn’t upset Gabriela but let me know if there were issues I needed to be aware of.

Because both Violet and Gabriela spent their days in the hallway, Violet often talked to my daughter. Early on in Gabriela’s stay she would try to get Gabriela to take her medication, to eat, to drink, to lay down and sleep, and to shower.…  She had never been mean or pushy, but always encouraging and caring.

That day, sitting in the hallway, I told Gabriela that she needed to take a shower. I told her that I loved her but that she stunk, and while she “had the right to be crazy,” she surely did not have the right to be stinky. Violet openly giggled and Gabriela looked a little flustered.   Unfortunately, my humor didn’t work, so there was no shower that day…. But at least Gabriela had started eating again.

November 14, 2011

During the day I worked as much as I could, but I hadn’t really worked seriously for months.  I just fit business in when I could,  trying to make enough money to support us. I was barely bringing in enough to pay bills, and if not for my roommate Susan always stepping in to help, I have no idea where my daughter and I would have been.

I always, however, went through the motions. I woke and dressed, then drove to the office each day and sat at my desk with no idea what to do. I usually had no business to conduct or anything to follow up on, but I knew I needed to get out in the world, if for no other reason than to be around people. Most days I only lasted at work until about lunch time. Then I would drive back home and get ready for my visits with Gabriela.

Each day, I brought things to the hospital for her. She hadn’t been eating or drinking, so I brought snack bars, chocolates, and bottled water.

After four or five days of Gabriela not eating, sleeping, drinking, or doing much of anything I got to the Ward to find a change. As I sat with Gabriela in the hallway, she gave short responses to the questions I asked. She also occasionally smiled sheepishly and hugged my arm as we sat. It wasn’t a big change, but it was an improvement.

The CA told me that Gabriela had had a sip of her juice for breakfast but hadn’t finished it. She also hadn’t eaten any food during the day or evening before.

I know people can go for an incredible number of days without food, but without water it’s only a matter of days before things start going wrong.

I had spoken with Dr. Duncan the day before (Sunday) about the possibility of putting Gabriela on a medical ward to force feed her food, water, and medications. He had reluctantly admitted that she couldn’t continue much longer on her current path, so we agreed that if she was not cooperative by Tuesday he would start something called a Riese Petition.  This simply meant that she would be forcibly medicated and fed.

She desperately needed anti-psychotic medications to cut through the hallucinations and paranoia, and getting that under control would hopefully allow her to think clearly enough to take care of herself and participate in getting better.

As visiting hours were nearing their end, the nurse offered Gabriela her medications. Gabriela took the cup full of pills and just poked at them with her finger.

“Gabriela, they’re fine, they are just generics. Take your meds, sweetie.”

Gabriela looked at me and tipped her head back, pouring all the pills into her mouth at once. Then she took a small cup of water and washed them down. She drank the water so fast and furiously that it ran out the sides of the cup and down her jacket. She hadn’t had water for so long that that little splash must have felt incredibly refreshing.

“I brought you bottled water,” I told her, “It’s here. Would you like some?”

Gabriela nodded her head and the client assistant brought out a bottle. She tipped the bottle up and drained it in one motion. The client assistant retrieved another bottle for her. She downed the second one as she had the first.

One step forward.  Gabriela was drinking water and had taken her meds again!