Getting More Than A Bandage: Reader’s Son Got Long Term Care


10-3-14  FROM MY FILES FRIDAY — I can’t always answer the mail that I receive, but I do read every email that is sent and this letter from a mother that I published in January 2010 was especially poignant. It raises a common frustration that I continue to hear nearly five years later.  

As you probably know Tom spent most of the summer in jail for taking a sailboat out into the Atlantic Ocean “to sail back to his birthplace.” The Coast Guard picked him up and thankfully handed him over to the local police.
We did not bail him out this time or even try to get him out for we told him last spring, when it seemed like he would flee, that he wouldn’t. He was released at the end of July with a misdemeanor and made his way 170 miles back home. I heard something way before dawn and was startled by him outside the window by my desk. This began a difficult time.
We were doing nothing to help him by giving him anything but help.

If we gave him food, shelter, money, a ride, a room, a drop of water, a piece of fruit, a meal, clothing, a shower, we were keeping him away from getting the help he desperately needed. This place, home, could only represent one thing and that was help. We questioned this move every day. We had no choice, the cycle of hospitalizations and running nowhere only to come home which would lead to chaos had to stop.
In October, we managed to get Tom, now actively psychotic, admitted into a local hospital. We were trying to get him into (a  state hospital)  because we knew another short term hospitalization would do nothing to stop this cycle. We were unable to do this and again, upon admission the discharge plan began. I told the social worker on the unit that if they planned to release him in 5-7 days, they might as well not waste the time and resources and let him go right now. He needed longer term so the medication can have a chance to work, that was our only hope.
I was told, “…there is no such thing as long term hospitalization anymore…they don’t do that anymore…”
But I knew there were patients at (the state hospital) for months.
We continued to listen as the days passed “…we don’t do that anymore… they don’t have long term up there anymore…”
And the most disturbing “…I only send the really difficult patients up there…”Even Tom’s psychiatrist, who I respect said, “…well…..we don’t normally like to transfer….they don’t like it when we do this… …I don’t think we’ve ever transferred someone up to (state hospital) after a 7 day inpatient here…”
I’m confused because during this time I’m talking to the professionals at (state hospital) who are hearing me and they’re ready for him. They want to help and yes, there are patients who have been there for two weeks, two months, four months, a year and more.
Finally, an angel at (state hospital) says, “It’s a shame ya’ gotta get ugly, isn’t it?” She gave me a direct phone number to a doctor who would coordinate the transfer if (local hospital) would make the transfer. I tried to explain to the annoyed staff at (local hospital) that I wasn’t trying to make their jobs difficult. How many fewer admissions there would be if the hospital was not pressured to discharge so soon? The rotating door admissions would certainly decrease, which would save valuable time and resources and would give the patient a chance to recover.
So Tom was transferred to (state hospital) in mid October where he remains today. It has been a difficult time for Tom but he’s hanging in there. Initially, he presented very well and after a month they moved him to the research unit where he managed to escape for 24 hours. They placed him back in the high security unit which was a low point.
Let me back up.
As soon as Tom arrived at (state hospital) I noticed something different. First, it is not a “nice” facility…the hospital is old and dingy. But the staff, the medical treatment teams are like nothing we’ve experienced in five years at (short term units.”
Here, the focus is on the patient, not discharge. It is the first time I spent over an hour with the “medical treatment team” asking me questions and truly interested in the answers- the patterns, the symptoms, the cycles, the compliancy, the running away, the running back home, the diagnosis, the medication, the explanation of his psychotic breaks, and so on.
They use this information with the information they get from Tom to give him the best care.
Here, we are not a headache to the staff, we are a welcome and a vital part of recovery. This is a (university connected hospital)  were everyone was working to understand brain disorders like schizophrenia and to hopefully find a cure.
Last week, after over two months, Tom moved up to “2 South.” It is still secure but there are many fresh air breaks and the real perk is the “therapeutic mall.” Here Tom takes classes from 9am-3pm and he learns about his illness, the medications, relapses, symptoms, art and daily living skills. There is a gym and even a band consisting of patients –some who have been there for years.
So (during the holidays), I see  college kids coming home and I find myself wondering where Tom would be if he hadn’t gotten sick. I need to remind myself that today he is better than he’s ever been. He expressed enjoyment in drumming during a music therapy class on Saturday and that is a first in a very long time. A beautiful gift. He is more in the moment and the doc said he was “chipper” on Monday. He asks about family and friends and these are all signs that he’s getting well. Discharge will come eventually when the time is right.
For the first time in a long time, we have hope.
Signed Tom’s Mom
State hospitals are not popular and continue to be closed down in favor of community treatment. Some people with severe mental illnesses need long term care to fully recover. Unfortunately, this care is generally not available in most community settings, especially those that don’t offer Assertive Community Treatment teams.
No one wants anyone “dumped” into a hospital. No one wants to go back to the asylum days when hospitals were giant warehouses with no exit signs. But before we padlock all of our state hospitals, we need to ask ourselves where will  persons who are severely ill get the in-patient help they need to become stable so that when they return to the community (as they should) they will be ready to successfully move forward with their lives?
What safeguards can we build into our system to guarantee that no one is abused, but everyone can get the quality of help that they need without being caught in a cycle of crisis care that only applies band-aids before shoving people out the door?
We need to have a frank and honest discussion about whether it is possible, even with great community services, to eliminate hospitalizations or should mental hospitals perform the same role as other hospitals by offering emergency care when people are in crisis and need critical care and stabilization?
About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.