My 32-year-old son is mentally ill.
It took me a long time to say that, and I’ve never alluded to it here. When he was a youngster and in a hospitalization, I’d side-step questions, make excuses for declining invitations that included him, and generally brushed aside inquiries except from the very few.
Finally, I was talking with someone about the uneducated prejudice and misconceptions that abound about persons with mental illness and, like a thunderbolt, it hit me so hard that I had to laugh. I was inadvertently promoting those same prejudices and shame by not admitting my son’s disability.
The ex-husband and I, living outside Atlanta, adopted Alex just five days after his birth. His teenage bio-mom didn’t show up at my ob/gyn’s office until she was seven months pregnant. I was told that she declined to give family medical history.
There were mild, early signs in the baby that perhaps something wasn’t quite right. Problems became more dramatic, and, when he was four years old, his pre-school administrator recommended that I have him evaluated. That began the in- and out-patient treatment that has continued throughout his life. That also began the list of changing diagnoses and medications. He requires a lot of structure and guidance. Sometimes his behaviors are unacceptable and he gets into varying degrees of trouble.
Part of the decision to move here rested upon finding a suitable placement for my son. With a lot of research and telephone calls, we found something that appeared ideal. They even agreed to a telephone screening interview rather than doing so in person. They accepted him, and we moved him there a few weeks in advance of our December cross-country move. He would be less than two hours from our new home.
Alex lasted three months in the placement.
In March, his behavior had deteriorated to such an extent that they took him to the psychiatric ward of their local hospital and began commitment proceedings. From there, he went to a satellite state hospital not far from our city. A month later, they transferred Alex to the big state hospital in Jackson, MS.
The State Hospital
To its credit, the state hospital is in a beautiful setting. The many
buildings, some of which date back to before the Civil War, stretch across 350 acres. There are a couple of lakes with fountains and ducks, benches and picnic tables. There are towering oaks and ancient magnolia trees. The various units house 915 licensed psychiatric beds in addition to 479 nursing home beds.
We were encouraged by the visual appearance on our first trip, but would face dismay and disappointment.
Alex was first admitted to an acute unit, which made sense given the circumstances. We worked with a kind and considerate social worker at that building. Our first visit to Alex was routine. The next trip, however, found him drugged to the point that I had to lead him by the hand. His head drooped to his chest and saliva dribbled from his mouth. We took him out to lunch, and Mike reported that Alex seemed to be dozing off during the meal.
I called the social worker the next day to report that my son was being overmedicated. She was already aware of that. She said that he had been acting out, so the staff bumped up his medication.
At the commitment hearing, a mental health worker told Alex in our presence that the state hospital was understaffed and couldn’t put up with misbehavior, so that if he acted out he would be “chemically restrained.” Those were her words and that’s what was happening. Alex later told me that at one point he was receiving so much medication that he couldn’t control his bladder or his bowels. He told me that he soiled and wet his bed in his sleep one night because he was so groggy he couldn’t take care of himself. He also said that staff chastised him for making a mess.
I encouraged the social worker to locate a placement so we could get him out of there.
I am not a doctor or a nurse. I am without medical training. On the other hand, I have been actively involved with Alex’s care throughout his life. To my understanding, the purpose of a psychiatric hospitalization is to stabilize the patient and prepare him/her to leave the hospital. I completely fail to understand how extreme overmedication equates with patient education or therapy.
Alex’s medication was finally reduced to normal levels and he was transferred to another building where we were told there was more therapy and more of a “program.” We were delighted, and our first visit to that building was encouraging. Everything about the environment of the sunny, unlocked building, including staff interaction with us, was much more positive and upbeat.
The social worker at that building soon began considering post-hospital placement for Alex, but she reported, as we had already learned, that resources in Mississippi are very limited.
December Surprise
While
lamenting her difficulty in locating a placement for my son, the social worker invited Mike and me to a staffing meeting regarding Alex. This must have been November.
Alex, Mike and I were escorted to a conference room where approximately a dozen people had gathered. The meeting was chaired by the psychiatrist who ran the unit. Most of the others remained silent. There were no great revelations, no discussion of diagnosis, no recommendations for follow-up. The doctor asked Alex a few basic questions such as the day and month and gave him a simple math question. The doctor seemed pleased and pronounced that Alex seemed to be quite clear.
OK . . .
Then he made a comment that riveted my attention. He said, “Alex seems to have a fear of being homeless.”
Don’t we all vaguely harbor that fear? Alex is a city kid and has seen homeless people, but it’s never been a threat to him. He’s always been cared for.
The doctor also made a comment which I never remembered precisely, but which referenced patients leaving the hospital for a homeless shelter.
I called the social worker the next day and asked about the homeless discussion. I asked her if the doctor was actually saying that some patients are discharged to the homeless shelter. She said that was true.
The social worker went on to say that it was a last resort, but, with limited residential placements, sometimes they just had to drop off patients at one of Jackson’s shelters. She said that she would give them their prescriptions and make an appointment for them at a community clinic, but that’s all she could do. “As I drive away, I cry every time I have to do it,” she said.
In early December Alex was placed at a country board and care. He did something he shouldn’t have, and, one week later, he was sent back to the state hospital.
On Wednesday, December 11, 2007, we were planning Christmas activities including a holiday home visit for Alex. The weatherman was warning of snow for the upcoming weekend. The hospital’s social worker called that morning. She was going to take Alex to a homeless shelter on Friday. She went on to tell me the address and the approximate time she would drop him, but I was in such shock and so angry that I didn’t comprehend. Besides, I knew we wouldn’t let that happen. Had I been thinking straight, I’d have let her do that and met her there with a tv camera crew.
Instead, I called Mike. He got a sub for the Thursday night job, and we made plans to pick up Alex the next morning. Alex lived with us for five months.
Final Steps
By the admission of two state hospital staff members, my son was neither the first nor the last mentally ill person they would dump at a homeless shelter.
If Alex had no involved family, which many of the mentally ill don’t, this is what would have happened.
They gave him prescriptions, but my son would not have known where to get them filled. If he got the seven medications, he probably could not have organized the times per day and amounts required for each of his meds.
The hospital had done nothing to reinstitute his SSI. That also means that he would have been without Medicaid. So those prescriptions mentioned above . . . he could not have obtained them.
No money. No knowledge of the city. No medications. His psychiatric issues would have become magnified. His childlike attitudes and behavior, caused by pervasive developmental delay (PDD), would have made him prey to all the horrors of the street. Likely outcomes – jail, injured, dead.
For months I tried to locate an appropriate residential treatment placement. His low-average IQ was still too high to qualify for resources that could have supported the PDD. We were told he was too high functioning. We were told he was too low functioning.
We took Alex for assessments and interviews, and I called so many people and places including persons at the state mental health agency and the MS chapter of the National Alliance for the Mentally Ill. More times than I wanted to hear it, I was told, “But you need to remember that you’re in Mississippi.” I even heard that from the state agency.
And why? Why does this state join the bottom of the list on valuing these residents who are just as ill as if they had cancer? Are the mentally ill of this state, and perhaps the nation, an invisible society who are unwisely served by ignoring and ignorance? How many tormented souls meet tragic ends because mental illness is the ugly stepchild of health care in the state of Mississippi?
My son is no longer in this state. His geographic location will not alter the challenges he faces and those he brings upon himself. But he is involved in a system of care with support and facilities for persons with varying needs.
And, most of all, no one will turn him out on the streets. He’s safe.
It took me a long time to say that, and I’ve never alluded to it here. When he was a youngster and in a hospitalization, I’d side-step questions, make excuses for declining invitations that included him, and generally brushed aside inquiries except from the very few.
Finally, I was talking with someone about the uneducated prejudice and misconceptions that abound about persons with mental illness and, like a thunderbolt, it hit me so hard that I had to laugh. I was inadvertently promoting those same prejudices and shame by not admitting my son’s disability.
The ex-husband and I, living outside Atlanta, adopted Alex just five days after his birth. His teenage bio-mom didn’t show up at my ob/gyn’s office until she was seven months pregnant. I was told that she declined to give family medical history.
There were mild, early signs in the baby that perhaps something wasn’t quite right. Problems became more dramatic, and, when he was four years old, his pre-school administrator recommended that I have him evaluated. That began the in- and out-patient treatment that has continued throughout his life. That also began the list of changing diagnoses and medications. He requires a lot of structure and guidance. Sometimes his behaviors are unacceptable and he gets into varying degrees of trouble.
Part of the decision to move here rested upon finding a suitable placement for my son. With a lot of research and telephone calls, we found something that appeared ideal. They even agreed to a telephone screening interview rather than doing so in person. They accepted him, and we moved him there a few weeks in advance of our December cross-country move. He would be less than two hours from our new home.
Alex lasted three months in the placement.
In March, his behavior had deteriorated to such an extent that they took him to the psychiatric ward of their local hospital and began commitment proceedings. From there, he went to a satellite state hospital not far from our city. A month later, they transferred Alex to the big state hospital in Jackson, MS.
The State Hospital
To its credit, the state hospital is in a beautiful setting. The many
buildings, some of which date back to before the Civil War, stretch across 350 acres. There are a couple of lakes with fountains and ducks, benches and picnic tables. There are towering oaks and ancient magnolia trees. The various units house 915 licensed psychiatric beds in addition to 479 nursing home beds.We were encouraged by the visual appearance on our first trip, but would face dismay and disappointment.
Alex was first admitted to an acute unit, which made sense given the circumstances. We worked with a kind and considerate social worker at that building. Our first visit to Alex was routine. The next trip, however, found him drugged to the point that I had to lead him by the hand. His head drooped to his chest and saliva dribbled from his mouth. We took him out to lunch, and Mike reported that Alex seemed to be dozing off during the meal.
I called the social worker the next day to report that my son was being overmedicated. She was already aware of that. She said that he had been acting out, so the staff bumped up his medication.
At the commitment hearing, a mental health worker told Alex in our presence that the state hospital was understaffed and couldn’t put up with misbehavior, so that if he acted out he would be “chemically restrained.” Those were her words and that’s what was happening. Alex later told me that at one point he was receiving so much medication that he couldn’t control his bladder or his bowels. He told me that he soiled and wet his bed in his sleep one night because he was so groggy he couldn’t take care of himself. He also said that staff chastised him for making a mess.
I encouraged the social worker to locate a placement so we could get him out of there.
I am not a doctor or a nurse. I am without medical training. On the other hand, I have been actively involved with Alex’s care throughout his life. To my understanding, the purpose of a psychiatric hospitalization is to stabilize the patient and prepare him/her to leave the hospital. I completely fail to understand how extreme overmedication equates with patient education or therapy.
Alex’s medication was finally reduced to normal levels and he was transferred to another building where we were told there was more therapy and more of a “program.” We were delighted, and our first visit to that building was encouraging. Everything about the environment of the sunny, unlocked building, including staff interaction with us, was much more positive and upbeat.
The social worker at that building soon began considering post-hospital placement for Alex, but she reported, as we had already learned, that resources in Mississippi are very limited.
December Surprise
While
lamenting her difficulty in locating a placement for my son, the social worker invited Mike and me to a staffing meeting regarding Alex. This must have been November.Alex, Mike and I were escorted to a conference room where approximately a dozen people had gathered. The meeting was chaired by the psychiatrist who ran the unit. Most of the others remained silent. There were no great revelations, no discussion of diagnosis, no recommendations for follow-up. The doctor asked Alex a few basic questions such as the day and month and gave him a simple math question. The doctor seemed pleased and pronounced that Alex seemed to be quite clear.
OK . . .
Then he made a comment that riveted my attention. He said, “Alex seems to have a fear of being homeless.”
Don’t we all vaguely harbor that fear? Alex is a city kid and has seen homeless people, but it’s never been a threat to him. He’s always been cared for.
The doctor also made a comment which I never remembered precisely, but which referenced patients leaving the hospital for a homeless shelter.
I called the social worker the next day and asked about the homeless discussion. I asked her if the doctor was actually saying that some patients are discharged to the homeless shelter. She said that was true.
The social worker went on to say that it was a last resort, but, with limited residential placements, sometimes they just had to drop off patients at one of Jackson’s shelters. She said that she would give them their prescriptions and make an appointment for them at a community clinic, but that’s all she could do. “As I drive away, I cry every time I have to do it,” she said.
In early December Alex was placed at a country board and care. He did something he shouldn’t have, and, one week later, he was sent back to the state hospital.
On Wednesday, December 11, 2007, we were planning Christmas activities including a holiday home visit for Alex. The weatherman was warning of snow for the upcoming weekend. The hospital’s social worker called that morning. She was going to take Alex to a homeless shelter on Friday. She went on to tell me the address and the approximate time she would drop him, but I was in such shock and so angry that I didn’t comprehend. Besides, I knew we wouldn’t let that happen. Had I been thinking straight, I’d have let her do that and met her there with a tv camera crew.
Instead, I called Mike. He got a sub for the Thursday night job, and we made plans to pick up Alex the next morning. Alex lived with us for five months.
Final Steps
By the admission of two state hospital staff members, my son was neither the first nor the last mentally ill person they would dump at a homeless shelter.
If Alex had no involved family, which many of the mentally ill don’t, this is what would have happened.
They gave him prescriptions, but my son would not have known where to get them filled. If he got the seven medications, he probably could not have organized the times per day and amounts required for each of his meds.
The hospital had done nothing to reinstitute his SSI. That also means that he would have been without Medicaid. So those prescriptions mentioned above . . . he could not have obtained them.
No money. No knowledge of the city. No medications. His psychiatric issues would have become magnified. His childlike attitudes and behavior, caused by pervasive developmental delay (PDD), would have made him prey to all the horrors of the street. Likely outcomes – jail, injured, dead.
For months I tried to locate an appropriate residential treatment placement. His low-average IQ was still too high to qualify for resources that could have supported the PDD. We were told he was too high functioning. We were told he was too low functioning.
We took Alex for assessments and interviews, and I called so many people and places including persons at the state mental health agency and the MS chapter of the National Alliance for the Mentally Ill. More times than I wanted to hear it, I was told, “But you need to remember that you’re in Mississippi.” I even heard that from the state agency.
And why? Why does this state join the bottom of the list on valuing these residents who are just as ill as if they had cancer? Are the mentally ill of this state, and perhaps the nation, an invisible society who are unwisely served by ignoring and ignorance? How many tormented souls meet tragic ends because mental illness is the ugly stepchild of health care in the state of Mississippi?
My son is no longer in this state. His geographic location will not alter the challenges he faces and those he brings upon himself. But he is involved in a system of care with support and facilities for persons with varying needs.
And, most of all, no one will turn him out on the streets. He’s safe.
6 comments:
Wow! What a journey you and Alex have had to make. I thought my life was hard, one child with bipolar, another with ADHD and bipolar and another with ADHD. I have always known Alex had problems and that it was a difficult situation for you, but until now I did not realize just what you have been going thru. Mom always said you had such strength but now I understand just how strong you are. God Bless You and Alex and Mike!
Awesome post.. Will be passing forward in a few..
If Alex is not part of something similar already, I'd be tickled to help him connect with disability Self-Advocates in his area.. In fact, here so he can do it himself:
National Chapters for SABE (Self-Advocates Becoming Empowered)
You'll sometimes see them going under the name People First in different states..
With what you experienced and the level of involvement it seems you have "on the inside", being very bold in suggesting MindFreedom, also, in case you haven't come across them yet..
When other orgs who generically claimed to be "my" Voice wholly ignored my tear-stained, desperate pleas for, at the very least, simple, basic, costs-not-a-dime moral support, David Oaks himself was the one and only who personally typed back way back when.. Definitely please consider keeping them on your redial shortlist should you come across any of the more serious infractions that continue to occur behind the scenes across the country every day..
{{Cyber hugs}} to Alex, you, and your family.. :)
Hi darling,
I just read your blog on Alex. I have never been so angry at the State of Mississippi Mental Health program. Of course, I know you are angry also.
The State of Mississippi has always been behind on everything and especially for mental health. People in Mississippi do not understand mental health deficiencies and they refuse to acknowledge that anyone in Mississippi or in their family could have a mental health issue.
I had an Aunt Jenny who was mentally incapable of taking care of herself. Mother tried and tried to take care of her but my Dad's family would not let her. Even my own Dad was ashamed of her and would not let her come and visit us. I was pretty young when all of this happened and only remember bits and pieces. I do, however, remember mother saying that they had put Aunt Jenny in the State Hospital where they did shock treatments on her.
I think I was about 10 or 11 when I saw her for the last time. She was put out of the Hospital and didn't have anywhere to live. She was living somewhere in Vicksburg.
Mother and I would go over and take her food. She was really a sweet person but when you talked to her you knew that she had some issues. I don't think I will ever forget her.
Mental health is a real issue in Mississippi. No one but no one will ever admit it. There have been some real breaks in mental health care in other regions. I only hope that some day Mississippi and several other southern states will catch up.
May God bless you and your family,
Cousin J
Ladies --
Kristi - Thanks so much for the very dear comment. I didn't know that all three of your kids had problems. With one in college and the other two so successful in their activities, I didn't imagine there were difficulties. I'm so sorry.
Cindy -
Thank you for the great information. As it sounds like you already know, one can never know when we might need to call on other resources. I'll check into them.
And, please share our story. That's why I wrote it. I don't believe the general public knows what can happen in state hospitals.
I'm curious about how you found us. Blog surfing?
Cousin J -
Thank you so much for sharing your aunt's experience. How sad. But I'd bet that there are more stories out there -- particularly in Mississippi, about uncaring treatment.
I'd like for those stories to see the light of day.
Darlin' Cousin Diane, I am so proud of you to have taken this enormous step in sharing about Alex. It says a lot bout him, but even more about you. Having shared some of this over--what?--24 years, I am and have always been awed by your seemingly endless strength and determination. I suspect your "sharing" will benefit people that you may never know or hear about. I salute you-again! And God Bless Mike for "being there" for you both. I send love.
Bill
As usual, Bill, you are more than kind. What I truly want to happen (now that my son is sage) is for the people of MS to find out how the State Hospital treats its patients and to rise up and DO something about the sad state of mental health treatment here. It's wrong. It's inhumane.
I have always been grateful for your support.
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