Finding Her Tribe

Picking up where the inpatient story left off, and continuing on with the saga of partial hospitalization…..

During her inpatient discharge we were told that youth are typically in the partial hospitalization program for 7-10 days. 

Two weeks.  Okay, I thought.  I can handle this and then we can start getting our lives back to normal.

Except that Rachel was not typical.

Rachel spent 26 days in the partial program. 

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The partial hospitalization program is located in a medical building on the same campus as the hospital.  As opposed to inpatient, kids in this program are divided into different groups by ages.  Not all kids in this program have been patients of the inpatient program, but many have.  Even more have returned to the partial program for additional treatment.  Patients are there for a wide variety of illnesses including depression, schizophrenia, bipolar disorder, anorexia, etc.

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For two weeks we had settled in to a routine of hospitalization from 9am – 3pm every weekday.  Parents wait with their kids until staff come to get them.  It was during these times that a song from Sesame Street kept going through my head; One of these things is not like the others, one of these things just doesn’t belong.  

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Rachel and I were the ones that didn’t appear to belong.  We weren’t a foster family, we weren’t low income, and Rachel lived with both of her biological parents who were happily married.  In this setting, we were most definitely the things that didn’t belong.

But then a funny thing happened.

Rachel found that she had more in common with this group of kids than either she or I would have imagined.  They understood her.  They didn’t judge her.  She was just part of their group without having to try.  In your teen years that sort of thing just doesn’t happen.  It was new and she liked it.

Rachel liked the security that the partial hospitalization program provided.  She fit in.  She had found her tribe.

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I asked her if she missed her friends at school.  She only missed a few.  For the most part she preferred the kids at partial hospitalization.  When I inquired why she responded “Because they’re actually nice.”

Wow.  Let that sink in for a second.  

Given the choice, she would choose schizophrenics and drug dealers over classmates because at least the mentally ill and the criminals are nice.   I began to wonder how toxic the school environment really is…..

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Her progress at the partial hospitalization program was slow.  Rachel was extremely guarded in the program because she was afraid of being sent back to inpatient treatment, which occasionally is necessary.  They struggled to determine the root cause of her depression which meant that therapy was often ineffective.  

In multiple meetings the psychiatrist seemed determined to find something disastrously wrong at home or some trauma that had occurred to explain everything.  Having a patient who lived with both of her biological parents was a rarity for her and she honestly seemed at a loss as to how to help Rachel and proceeded to prescribe various psychiatric medications.

Despite all of this, April 2019 started with a safety plan meeting at her middle school.  She had been in the program for 11 days and this meeting was required before she could return to school.  Plans were made for her to begin the transition back to school on April 2^nd with mornings at partial hospitalization, and afternoons at school. 

I was looking forward to getting back to our ‘normal’ routine. 

I was hopeful things were on the right track.

I was wrong.

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When I picked her up on April 2^nd to take her to school she was nervous, but that made sense since she hadn’t been there for weeks and knew her classmates would be curious about her absence.  Her counselors had prepped her for how to deal with questions from classmates.

On the lengthy drive from the hospital campus to school she began to have a panic attack.  This was new for her.  We got inside the building where one of the counselors eagerly welcomed her and enthusiastically asked “how are we doing?” with a big smile on her face.  I responded ‘not good’, she looked at Rachel and rushed us into the counseling center away from the other students. 

Another counselor worked to get Rachel calmed down, even taking her for a walk outside while I stayed with the other counselor. 

While Rachel was out of the office I asked the counselor what our options were.  At first she didn’t understand my question.

“If she is unable to ever return to school and function normally, what are our options?”

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She resumed the partial hospitalization the next morning.  Days went by and this became our new normal.  We were living in our own version of the psychiatric ward.  Anything she could easily use to self-harm had been locked up and hidden, and the same had been done with all medications.  She was never left alone (except to use the bathroom and shower) and was required to spend virtually all her time at home on the main floor where we could maintain visual contact. 

It was a miserable way to live.  At times I lost hope that she would ever get better.  I wondered if we would ever get back to our previous life.  Rachel had found her tribe and honestly preferred being at partial hospitalization to being at school. 

But then motivation came from an unexpected source.  Insurance indicated that since she was not showing sufficient progress they would not continue to provide coverage for the partial hospitalization program.  She was either making improvement and could return to school and her regular therapist, or she would be transferred to a 6-month long-term care at Boys Town.

With little more than a month left of middle school and our refusal to allow her to be admitted to Boys Town, Rachel managed to return to school and resumed appointments with her therapist.  Curious classmates mostly accepted her response that she had been absent ‘for medical reasons’.  

Unfortunately, one classmate prodded for details until Rachel hit her breaking point and yelled “I WAS IN A MENTAL HOSPITAL!!!”  This was not the technique the counselors had suggested but was extremely effective at getting classmates to leave her alone.  

(I should also note that her best friend knew where she was the whole time and did an EXCELLENT job of not telling anyone anything.  That had to be a hard secret to keep.)

Was she better? Not really, but she did her best in her medicated state and finished the school year.  While she did that, I began working with the high school to prepare for the challenges we knew lay ahead. 

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The story of partial hospitalization continued in October when Rachel received the Beacon of Light Award for being their ‘patient of the year.’  Although wishing she could still spend her days with Miss Michele (one of the partial program therapists), Rachel has worked hard to keep her treatment moving forward without needing to return to ‘partial’.  I don’t know the statistics, but for many of the kids it was not their first time at the program so she is still in many ways a rarity when it comes to the partial hospitalization program.

Despite finding her tribe there, hopefully now she is one of the kids who is well enough to say they are ‘one of those things that doesn’t belong’…..

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A Tale of Two Aprils

Two Aprils in a row.

A second April that Rachel isn’t at school.

This April is so much better than last year.

Leave it to Rachel to make a pandemic seem like a blessing.

 

Last April:  Home is not a safe place for Rachel

This April:  Home is the only safe place for Rachel

Last April:  Constant worry about Rachel’s health

This April:  Rachel’s health is the best it has been in the last 13+ months

Last April: Long daily drives to take Rachel to and from partial hospitalization

This April:  Barely using my car

Last April:  Rachel not at school, not even doing schoolwork

This April:  Rachel not at school, doing schoolwork successfully from home

Last April:  No idea how to keep her safe

This April:  Clear/easy instructions for how to stay safe

Last April:  Barely sleeping, worrying if life would ever get back to normal

This April:  Sleeping well, hoping life finds a new, better normal

Last April:  Rachel on medications that weren’t helping and were causing additional problems

This April:  Rachel on medications that seem to be working with no noticeable side effects

Last April:  Doubt that things would ever get better

This April:  Things are ALREADY better

Last April:  All alone

This April:  We’re all in this together

Prior to distance learning this semester, Rachel had missed more than 13 days of school for (physical) health issues connected to her depression.  (For reference, there were only 45 days of school and two of those were e-learning days due to the weather.)  Since the implementation of distance learning back in March, she has not had a single sick day.  Unfortunately, school was a toxic environment for her long before the pandemic.

So, am I enjoying the way things are right now?  Honestly, yes. 

I wouldn’t wish coronavirus on anyone, but my real concern is when things go 'back to normal’.  If I could wash my hands to keep her safe from depression I would wash my hands raw.  No masks or gloves are going to keep her safe once things return to ‘normal’. 

So, if you’re looking for the ‘good’ in this situation, it’s us.  It’s given us a respite from the seemingly non-stop health issues we’ve been dealing with for Rachel.  This is the first time this school year where she hasn’t been struggling to get caught up because of days she has missed.  She has time to do art therapy and get exercise and fresh air which are all important components of her treatment, but for which we rarely had time. 

Is the new motto for the Wahlgrens 'Quarantine over 2019'?  Probably not. 

But I’m going to enjoy this while it lasts……..

Inpatient vs. Incarceration

Last summer Elisabeth got me hooked on a Netflix show called ‘Girls Incarcerated.’  I found myself drawn to it because it was eerily reminiscent of Rachel’s inpatient treatment. 

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Yep.  How we treat the mentally ill is similar to how we treat criminals.  (To be fair, there is some overlap among those two populations).

(Note: I am not claiming to have any extensive knowledge here but am simply sharing my comments on what I observed/experienced and what Rachel has shared about the experience.)

The first similarity is the apparel.  The girls in the juvenile detention system wore basic polos, sweatshirts, scrub-type pants, and shoes with Velcro fasteners.  Kids in inpatient treatment basically wear t-shirts, sweatshirts (no hoodies allowed), and leggings.  They often don’t wear shoes because, well, they aren’t allowed to leave the unit so they’re unnecessary.  Clothing that we provided for her had to be checked and approved for safety measures before it was taken into the unit. 

Second is the layout/design of the unit.  (I have a degree in architecture so yes, I’m overly attentive to this stuff).  The floor plan is open so that everyone is visible at all times with all bedrooms along one wall.  I don’t remember the capacity of the unit, but it isn’t large.  Furniture is either bolted down or substantial enough that it cannot be lifted (or thrown).  Decorations are sparse.

Bedrooms are lockable----for safety purposes.  At school kids learn how to go through lockdown procedures to keep the ‘bad guys’ out.  Well, what happens when you’re in a locked unit with said ‘bad guy’?  You are taught to lock yourself in your room until staff neutralizes the situation and unlocks your door.  Yikes.

I would later learn that Nebraska doesn’t segregate mental health patients into units based on severity of illness.  This means that kids who are suicidal (like Rachel) are in a locked unit with kids that are schizophrenic and experiencing hallucinations, or some who are even homicidal.  Other states have better mental health systems and classify patients for their safety. 

When we arrived for our meeting with the unit psychiatrist the morning following Rachel’s admission, we were given a diagnosis of major depressive disorder (mdd).  They had already met with Rachel and assessed her.  Components of treatment for this are nutrition, sleep, medication, therapy, daylight and exercise.  Seems simple enough, right?

In the less than 18 hours since she had been admitted, she went for more than 36 hours without food.  Due to the events of the previous day, she did not eat lunch at school and rarely ever ate breakfast.  When she was admitted the staff assured me that they were getting her a meal tray even though she had missed supper.  We later found out this never happened.  Although hungry, Rachel was too scared to ask the staff for food.  The unit has a specific daily schedule and when she was told to go to bed she did as she was told.

Adequate sleep has a direct impact on mental health yet for safety purposes the staff does bed checks every 15 minutes.  I understand this requirement but see how much sleep/rest you can get when someone is shining a flashlight in your face every 15 minutes to see if you’re still breathing.  Not to mention the fact that some of the other patients are downright scary and it’s hard to fall asleep when you’re worried that they might hurt you.

Psychiatric medication is a complicated subject (and one I’ll address in more detail in a future post) but she was on medication at the time of admission and they were to continue administering it as directed.  In less than 18 hours they had made two major mistakes with her medications: they completely missed her evening medications and they medicated her incorrectly in the morning. 

She was then sent to group therapy which was likely unproductive for her since she could barely stay awake due to the medication she should have had at bedtime and instead received at breakfast. 

So, just to review..........at this point she had not received adequate nutrition or sleep and had been improperly medicated which led to a day’s worth of therapy being practically worthless.  (Note: For any nurses reading this, please understand that I realize you’re human and that you make mistakes.  When these mistakes were brought to their attention they did take steps to correct the situation.  This is simply describing my frustration at the time, it is not a criticism against the nursing profession.)

Daylight is also critical to mental well-being, yet these kids are never allowed outside and there is minimal natural light and some of them remain in this unit for a month or more.  Even the kids on ‘Girls Incarcerated’ got time outside.  They spend their time sitting or laying down---no exercise.

In their free time, the other patients taught Rachel creative new ways to turn household objects into tools for self-harming.  One involved breaking a regular plastic clothes hanger a certain way. 

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Fabulous.  If I thought our house wasn’t safe for her before……

I began to question if this was really an improvement in my effort to keep her safe.  Jeff’s resistance to this line of treatment was looking more and more logical.

Needless to say, it clearly wasn’t the optimal solution I was looking for and the next day we requested she be discharged.  They wanted to keep her one more day, but after acknowledging that nothing would materially change for her in 24 hours, our request was granted and we brought her home with arrangements made for her to begin the partial hospitalization program the very next day.

The main benefit of inpatient treatment was that it provided a serious wake-up call for her.  She saw and heard what some of the other kids were dealing with and decided that she was doing pretty well in comparison and it motivated her to want to get better.  One patient that really got to her was a 9-year old boy who had tried to hang himself. 

Nine.years.old. 

As she talked about him she said ‘Mom, he’s just a kid.’  I sat there thinking ‘So are you, Rachel.’  We still wonder about him and if he’s doing better.

So, while there was no 'Nurse Ratched', the adolescent psychiatrist for the unit was a bit……rough around the edges.  It wasn’t like ‘One Flew Over the Cuckoo’s Nest’ but inpatient treatment still isn’t great.  (BTW: Netflix is coming out with a Nurse Ratched series this year based on the movie----you can bet I’ll be watching).

While Rachel was being discharged another teenage girl was being admitted.  Her mom had a shell-shocked look that I’m sure I had two days prior.  I told Jeff I wanted to comfort her and tell her that everything would be okay.  He quickly pointed out to me that I couldn’t promise her that.  We didn’t even know if Rachel would be okay.  We were just moving on to the next phase of treatment: partial hospitalization.

That’s a story for another day.

To be continued…….

Happy Death Day

One year.

One year ago today I received a call that changed our family forever.

“Rachel is safe, but….”

That’s how it started.  The dreaded phone call.  But that certainly wasn’t the beginning.

I’ve heard so many stories about teenage suicide explain how no one knew anything was wrong.  I understand how this can happen, and yet this was not us.  We KNEW she was not okay.  We had known for more than six months about her self-harming and had suspected it the previous spring (she lied when confronted about it, but that’s another story).  Her counselors were helping her at school, she was seeing a therapist and she was on medication.

This wasn’t supposed to happen.

But by suppertime one year ago today I had authorized my daughter’s admission to a locked psychiatric unit.  To keep her safe.  To keep her alive. 

By this point I was communicating frequently with one of the counselors at her school.  I had come to dread his calls, not because he was a bad person (far from it) but because he never called with good news.  So when my phone rang that afternoon and I saw his name I wasn’t terribly shocked.  His request that Jeff and I come to school ASAP, however, was very unexpected. 

By some small miracle, Jeff was actually able to answer his phone when I called and he came home so we could go to the school to get her.  Once we got there the counselor informed us that Rachel had moved from ‘suicidal ideation’ to ‘suicidal intent’.  She confessed to him that she had three potential plans for ways to commit suicide, in her bedroom, that we would be unable to prevent.  She had come dangerously close to putting one of those plans into action the night before.  School policy dictates that in this situation he must complete the required ‘suicide intervention’ paperwork, which then required us to take her to the hospital for a mental health evaluation before she could return to school.

Rachel was brought into the conference room with us and this process was explained to her.  As Jeff and I struggled to process what was happening, Rachel looked down the table at me and said “Mom, don’t cry.” 

“I won’t” I responded.  And somehow I managed to keep that promise. 

This is when the reality and severity of her illness sunk in for me.  Not because of the information we had just received but because of Rachel’s demeanor.  Too often depression is thought of as extreme sadness.  Rachel wasn’t sad.  She had what is known as a flat affect, a complete absence of emotion.  And it was terrifying.  The emotional rollercoaster that teenagers are known for is certainly not fun, but it’s at least normal.  This wasn’t normal.  This was so beyond normal it’s hard to even describe.

The drive to the hospital was long.  There are only three hospitals in our ‘area’ that are equipped to deal with this: one in Lincoln, one in Council Bluffs, or (where we went) Immanuel hospital in Omaha. 

Upon arriving at the Emergency Department, I felt that we were out of place.  There were no obvious injuries or signs of illness.  Was this really where we were supposed to go?

After explaining to the lady at the desk that we were there for a mental health evaluation, she nodded and quickly processed Rachel.  A nurse did a preliminary exam while security was contacted.  From that point on, we had a security guard with us until she was within the locked unit.  At the time it seemed ridiculous.  She’s not a danger to anyone but herself, I thought.  But that was the point.  He was there to keep her from trying to hurt herself.

She was required to change into scrubs and then a mental health practitioner met with her while we sat in a waiting area and watched as her apparel was searched by multiple security guards. 

The practitioner came and discussed our options with us: outpatient treatment, partial hospitalization, or inpatient treatment.  I opted for inpatient treatment.

It is as this point that I should note that Jeff strongly disagreed with this choice.  He did not feel it was necessary, but he also knew that if we took her home and anything happened to her I would hold him responsible.  I honestly felt it was the only choice because in the previous hours it had been made painfully clear to me that the one place that I thought she would always be safe, home, was, in fact, not a safe place at all.  Furthermore, I felt ill equipped to determine how to make it safe for her. 

Since that day I have often questioned whether my decision was the right one.  If you ask Rachel she will tell you that at that point in time, it was absolutely where she needed to be.  The ‘return rate’ for that unit seems to be rather high, so I’m grateful we haven’t had to repeat the events of that day. 

A few weeks ago on the way home from her weekly therapy appointment, she shared with me a dream she had had the previous evening.  It was a movie about her life titled “I Lived Past My Death Date.”  She refers to March 12^th as her ‘Death Day’ because she really didn’t think she would still be with us on March 13^th.  By some miracle she is.

That’s not to say that she’s fine.  There is no cure for major depressive disorder and her treatment is ongoing and varied.  But she’s definitely better than she was a year ago.  While I wouldn’t wish this situation on anyone, it definitely beats the alternative. 

It makes me think of the movie ‘Pirates of the Caribbean: The Curse of the Black Pearl’ where Captain Jack Sparrow repeats throughout the movie:

“This is the day that you ALMOST caught Captain Jack Sparrow!”

March 12^th will forever be the day that we ALMOST lost Rachel.  But we didn’t and that’s the important part.  A student at a middle school near us took his life a couple weeks ago.  It’s a painful reminder of what could have been.  But we’ve made it a year.  It was a rough year, but things have gotten better and we have hope that they will continue to improve.

So Happy Death Day Rachel.  We’re so glad you’re still here with us. 

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