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Saturday, November 22, 2014

Our Experience with the Mental Health Boarding Crisis

If you are one of the regular readers of this blog, you are probably thinking "ANOTHER post?  I am not up to ANOTHER post!"  Please feel free to take a reading break!  I will not be hurt!  I just feel so compelled to get down the details of this story before they leave my head.

So---what is boarding?  In this case, boarding means keeping psychiatric patients at a regular hospital, either in the ER or on a regular medical ward, until they are able to be admitted to a psychiatric hospital or sent home.  There are far too few psychiatric beds in this country, most especially for children.  So children wind up boarding at hospitals.  I was often given two weeks as a common amount of time to be boarding.  There is an article here especially about this crisis in Massachusetts, but it exists all over the country.

I think I'd vaguely heard of boarding before last week, but didn't really get it.  I knew it wasn't considered a good idea to bring autistic kids especially to the ER for anything but the more dire times, because there was little that could be done for them there, but I didn't get that the problem went beyond that.

In an ideal world, and in I think the minds of many people, things would work like this---You have a child that is somehow showing signs of a severe mental health crisis.  You, or your school, have no idea how to handle them.  They are becoming unsafe to themselves or to others.  In the crisis, you take them to the ER.  The ER assesses them, and somehow is able to  help them, within the time frames you'd expect for other medical crises---a few hours to a few days.  It's not fun, but it's in line with something like appendicitis or a bad case of the flu.

I'll use Janey's case to illustrate the reality.  She had been having a tough week.  Things escalated Friday at school.  The school rightly called an ambulance.  Janey was taken to the ER about 1:30 pm.  Her vitals were checked, we told our basic story.  We finally saw a psychiatrist about 5 pm.  The psychiatrist determined that Janey needed to get more help.  She said she would check if there were a space in the few mental health wards that could handle Janey's complex needs, but if not, we would sleep over in the ER.

I've written about the time in the ER.  There were no spaces available.  So, after a 24 hour hold, Janey was admitted to Children's Hospital.  She got a single room on what was actually a transplant floor, mostly for babies needing kidney transplants.  The nurses there were not psychiatric nurses.  The room was not set up for a psychiatric patient.  They removed a lot of things from the room before we went in, like the rolling vital signs computer and the phone, to make it a little safer.  And we settled in, to wait for the moment there became a place available at one of the two hospitals in our part of the country that could take Janey.  The hospital checked three times a day for a spot.  On Thursday, around 8 pm, we finally left by ambulance, after 6 days.

Those are the bare facts.  The reality was, well, hell.  Janey was not allowed to leave her room.  I understand the reason for that.  She wasn't stable, and she could hurt other patients.  But for a child in mental health crisis, being confined to a small room is not easy, to say the extreme least.  Hospital procedure, and from what I am told procedure at most hospitals, is that a mental health boarder must have someone from the hospital or contracted to the hospital in their room at all times.  These people are called "sitters"  In theory, that is a good idea.  It's a second set of hands, someone else to keep an eye on the child.  In practice, well, it makes things a lot tougher, actually.  The sitters varied.  Most were well-meaning, but mostly they did what the name says---they sat.  They sat in a chair and did nothing.  They didn't play with Janey or help in any way.  We were not supposed to leave Janey alone with them, so we still needed to be in the room with her.  They were supposed to let us be able to sleep, but in reality, when Janey woke, it woke me up.  They became one more person in the room to protect from being hurt.  We were unable to talk to each other with any candor.  I felt I had to make conversation at least a little with the sitters to not be totally rude.  They were an added source of stress for certain, although I know they didn't mean to be.

When Janey's behavior escalated in the hospital, we tried to handle it ourselves.  If she got more upset, which probably happened about 10 times while there, we called the nurse.  That was the procedure.  The nurse could do little to help.  She would call the psychiatrist on call, or what was called the behavioral team.  The only real response they had was to give Janey more medication.  There wasn't much else that could be done in the confines of a hospital room.  A few days, Janey wound up overmedicated and groggy.

Aside from having a great deal more psychiatric beds available, what would help patients and families who are boarding?  I have a few ideas.  The biggest one---have SOME spot in the hospital where the child can run around, can be out of their room.  Even if this is only once a day, and has to be scheduled so the child is alone and there is staff there, it would be a HUGE help.  With sitters, either train them better or make them optional.  Have them be helpers. Have some understanding of the stress it puts on a family to have some stranger in their room all the time.  Give the parents an hour of respite now and then.  I was lucky to have my friend Maryellen help me several days with Janey.  Janey's current and a past teacher, which felt like heaven---help and support. Another dear friend braved horrible traffic to bring us some of Janey's favorite foods---a sour pickle, bread and cheese!  In one of life's strange coincidences, a friend who is part of the staff at Janey's old school actually had a relative in the same ward as us.  Seeing her friendly kind face quite a few times during our stay was wonderful.  She brought us a bag with food for Janey, some Play-Doh, puzzle books for me and other treats.  I will be grateful for all those kind gestures, as I will be for all of you, my internet, blog and Facebook friends, for your support and love, for the rest of my life.

The United States is one of the richest countries on Earth.  It is a shame, a crying, horrible shame, that we can't put more resources into helping our children with mental health issues.  Next time you see a news article about a troubled adult acting out, remember they were once a troubled child, and that the money spent to help them at that point is far better spend that money that will be needed as an adult for prison or for a locked ward someplace.  I hate to be that blunt, but that is the reality.  One child having to "board" ever is one child too many.


Freeyoke said...

Good observations and active thinking while under some stress. A running room of sorts makes sense as even prisoners in high security prisons get out of their cells for an hour day. Why? Not letting people out is punishment in this country but when its a mental health issue I can understand why its done but long periods it seems counterproductive. Are the sitters just large staff members who tackle unruly patients? They may be detached because they see this stuff on a daily basis but I'd help out because I'd get tired of sitting on my butt watching families go through the wringer. I got glimpse of the other unhappy side of the autism coin that public doesn't see when I took my daughter to the Marcus Autism Center in Atlanta yesterday. Two women in body armor escorted a boy (he was taller than them) through the building and another had three people dragging another boy who was kicking, screaming and biting. My 4 year-old daughter and 3 old-year son watched it unfold. It didn't seem to faze them much but it's the kind of thing you wouldn't want your kids to watch even on TV. Could that be my daughter is a few years? I wish all the people with happy faced autism blogs saw some of these scenes because yes, its disturbing but it's happening and until people see it there's not going to be more help available.

Suzanne said...

The sitters are a big variety. All of the ones we had were women. I think most of them work for an agency, and have limited training in mental illness. One said she had taken a class at the Red Cross. They weren't big women---I was scared of Janey hurting them, which she did with a few. One of the sitters was a college student at Northeastern who was doing the sitting as part of a co-op work experience. My sister has told me it's a low paying, thankless job, and I felt for the women. One of them told me families often swear at her and threaten her---especially those that have a sitter because of custody or suspected abuse situations, instead of as for us because the child is acting out. I had nice talks with many of the women, but overall, they were not a help. I wasn't in need of friendly talks, I was in need of help!