An All Too Familiar Story: A Family’s Painful Struggle To Help Seriously Ill Son

Happier times: Marti, daughter Sophia, and John at Sophia’s graduation in 2010.

(7-29-19) Thank you Marti for sharing your family’s story.

OUR SON JOHN DESERVED BETTER AND SO DID OUR FAMILY

By Marti Cockrell

John was not a criminal.

John should have never been in the criminal justice system. He never did anything deliberately criminal.

When he was young, he was mischievous and fun-loving, and got involved with some friends who together got into different kinds of trouble, but nothing serious.

When John was in school, he started smoking cigarettes and using some street drugs, pretty early in his teens, but the counselors in school told me they didn’t have time to help John, because they were overloaded with kids who were on ‘hard drugs’. We live in Tarrant County, Texas.

The counselors sent us to a church for a group meeting one evening, to see if that might help John. They put us in two separate rooms — parents in one, children in the other.

The people in the room where John was made fun of him for coming to get help to quit smoking cigarettes, because they were all addicted to ‘hard drugs’ — meth, cocaine, heroin.

The counselor in our room, after listening to all the stories from everyone in the circle, told us “if your child won’t do what you tell them, and stop doing drugs, it is your house, you have the right to kick them out.”

We went home frustrated. We had wanted help.

In 2007, John had his first manic episode. What followed next were numerous encounters with mental health authorities and the police – endless phone calls and pleas until we were able to get him into North Texas State Hospital in Wichita Falls, Texas.

He was there about 3 months. At that time, a treatment team worked with him –  a doctor, a psychologist, a social worker, and other capable staff. They held treatment team meetings with us regularly and before he was discharged.

They did what they could to answer all our questions and help us know how to get him the community support he needed. They helped him apply for Social Security Disability.

He came home and when he felt himself slipping into another manic episode he would ask for help. He always asked to go to the hospital before he would lose control. He told us that he wanted to be in a safe place because he was always so sorry about the things he did when he was manic.

He wanted to avoid that happening again.

The first few times, we tried to get him into a hospital, any hospital, quickly enough to be safe, get help and be stabilized on his meds. It was frustrating for him because he always kept his doctor’s appointments, and took meds which helped him. We eventually learned John had what was called ‘breakthrough mania’.

When he felt an episode coming, the clinic, where he saw the doctor regularly, just told us to take him to the hospital but most of the time, JPS Health Network wasn’t able to admit him. We just sat in the emergency room waiting for hours for him to be evaluated.

After multiple breaks, we were able to get him into the state hospital where he had gotten such good care earlier, but it didn’t keep him very long after that initial visit. It needed beds for others.

We got our local private Behavioral Health Hospitals to admit him, but consistently, each of them changed his medication and discharged him after only ‘7-14 days.’ We were told that was the max allowed by Medicare. We also were told that Medicare had a 190 day lifetime limit on patients in a psychiatric hospital.

Plus, we were told that hospitals are required by law (at least in TX) to tell the patient, upon admission, how many of these days they have left, and that they therefore needed to get out as quickly as possible. I was outraged. Such a cruel practice, when someone is already so sick.

This was told to me by a counselor who worked with John in a short term facility in College Station, where they discharged him to a homeless shelter after the second ‘7-14 days’ was up and announced ‘they couldn’t help him any more’.

We were told more than once, by those in the system, “jail is the new mental health care system.”

We became so frustrated that we began identifying what was missing in our community. What could have helped John.

There is no Crisis Care Center for Mental Health Care in Tarrant County, like in other counties in Texas. There is no long-term care facility in Tarrant County.

John would have found the help that he needed if there had been somewhere that he could have gone where they would have kept him long enough to be stabilized back on his meds after a ‘break through mania’ episode.

There is no communication between state mental health care providers from one county to another, no possibility of them being able to access John’s records and see his history.

Two of the jails where John was held during his last episode, Robertson County and Wichita County, said they did not have any mental health staff available to evaluate him. They both said it could be months, up to a year even, before he might be seen by a psychiatrist to have medication prescribed.

A year!

We found ourselves asking: which costs taxpayers more, preventing a crisis like John experienced, or allowing it to happen and dealing with the after effects?

We found ourselves asking: Is there any kind of ‘truth & reconciliation’ process available to us as a family, who have lost someone & been through so much pain and suffering as a result of the lack of care and/or system failure?

It would help us be able to live with what happened if we could talk to those who were at each place and knew John.

John never was a criminal. He should never have been in the court system and jail! He needed medical attention in a health crisis. Period. We did everything we could think of to get help for him, but the help he needed was not available in Tarrant County, or any other county in Texas where he ended up in jail. Our not finding help was not for lack of trying.

John was critically ill and desperate during his last three months of life. We knew he was desperate. He had been desperate before, and each time it had become this bad, we were able to somehow find a way to get some sort of help for him.

We thought we could do that again if we just didn’t give up and kept trying.

We were sure that someone, even just one person, would finally really listen and hear what we were saying about his need being based on his being critically ill, and provide the way through the crisis to help.

But this time, no one heard.

I have thought about this a lot since he died, and I am convinced that I didn’t even understand how desperately ill he was, and what he was trying to communicate when he said things like, “I don’t know what is going to happen.” “I can’t stop shaking.” “You don’t understand, mom, this is all me. I have to ‘man up’ and take care of it, you can’t do any more to help me.”

He sounded like he had given up all hope a full 2 ½ months before he finally ended his life.

That’s a very long time that he held on to the hope that we would be able to help him get back home and heal again. He tried so hard. He was so courageous all that time, and really did all he could.

We all trusted the systems that are in place. We didn’t want to break the law, none of us did. Not John, not any of us in the family, not his friends. Ultimately, we trusted the ‘professionals’ and the law.

We should have known better.

I wish so much I had known better.

Somewhere along the way, John should have been given better language to be able to tell us what he was experiencing, registering. When someone is in a health crisis which involves their heart, or lungs, or their brain, there are words, there are outer signs. They can’t breathe, they collapse in a heap on the floor, they have so much pain that they are able to let someone know, so tests can be done and the source of the pain identified, if the pain is from a physical cause. These are possibilities only if it is a physical health crisis.

John’s crisis involved his toxic brain chemistry, that was so toxic he was unable to think straight and communicate his pain. He could hardly put sentences together.

So many breakdowns in different, fragmented systems. So many out there, so many ‘Johns’, don’t have any support system of their own to speak of.

Marti Cockrell can be reached at [email protected]

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.