FROM MY FILES FRIDAY: I received an email from a frustrated parent this week who complained that her daughter had been discharged from a local hospital so quickly that she didn’t have time to become stable. There was no follow up and her daughter soon became sick again and had to be re-admitted. That email reminded me of one of the first blogs that I posted here. It was based on an email written by another mother who voiced an identical complaint about her son. It still seems that getting long term care for someone who needs it remains difficult at best and sometimes impossible.
Edited version of Thinking of Others, first published January 18, 2010
Dear Pete
Our son 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. This time, we did not bail him out or even try to get him out because we were afraid that he would simply flee again. Tom 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 to see him standing outside the window by my desk.
This began a difficult time for us. 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. We had to refuse him help.
In October, the situation had become so despair that 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 planning 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 could 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 (state hospital) for months.
We continued to listen to the same comment as the days passed “Sorry…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, whom 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 (the state hospital) who are hearing me and they are telling me that 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 (the state hospital) said, “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 demanded the (local hospital) transfer my son. I tried to explain to the annoyed staff at (local hospital) that I wasn’t trying to make their jobs difficult. I simply wanted to help my son.
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 used this information with the information they get from Tom to give him the best care possible.
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 works 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.
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. How many fewer admissions there would be if (local 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.
Tom 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 mother.
This email raises a question that many in mental health care advocates refuse to address. Some people need longer term care to recover. This care is generally not available in most community settings. Yet, state hospitals are expensive, not politically popular and continue to be closed down. Where will persons who are severely ill get the help that they need to become stable?
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