Monday, December 28, 2009

Tall Paul

This personal account will be published in a Psychiatric trade journal in the near future. It is a version of Paul's story that I have been telling for over a year - to anyone that will listen. I sent my "Health Care Reform Letter" to the editor of this journal, in response to an article I found on-line from several years ago about long-term care for the severely mentally ill. They responded back, asking me to contribute to their "Personal Accounts" section - but they wanted more of how Paul's treatment made us, his family, feel. They wanted more of me in it. Then they asked me to keep it to 1600 words! Ack!

Note: I used a few lines from some pieces my sister, Katherine Dering, wrote about Paul. I knew she had written some good stuff and since
they wanted to know about his family's feelings, I thought using something that another family member already wrote would be useful. Thank you Katherine! I asked them to include your name as a contributor.
Tall Paul

Tall Paul

Tall Paul

Tall Paul

He’s my all

A little ditty we used to sing to my brother Paul when we were little…

My twin brother Paul was among the thousands of patients who were released from the New York state hospital system. While the gesture is a noble one, that everyone has a right to live with other members of society, there is a segment of the mentally ill population that should never be expected to be able to live on their own and who need constant supervision. Paul was one of them.

Paul’s first major psychotic episode was at the age of 16. After a three day observation he was admitted to a private hospital, diagnosed with schizophrenia. A year later, my parent’s insurance “maxed” out and they were advised to commit him; it was the only option that would ensure they could financially take care of their nine other children. Paul never left the state hospital system, except for short visits home or day outings, until the hospital closings caught up with him in 1998, 22 years later.

Paul was extremely resistant to any type of drug, behavioral or cognitive therapy. While he mellowed over the years, never a day went by without him talking of something that never happened, like being killed by one of his best friends, making millions as a Kung Fu star in Korea, or having 200 children born from his teeth.

He did have some lucid moments. He could ask after my sons and he loved to show me all of the pictures of his nieces and nephews in his wallet. He knew who everyone was, and could follow along with the happenings of our family members over the years. But his conversations were always interwoven with a medley of delusions. Always.

My family agonized over Paul’s initial commitment. Paul was my twin. How could I be happy when he was in “there” and I was living a so-called normal life? But I “went on” with my life, as I was told. I moved away, met my husband; I even had my own set of twins, which was a blessing and a curse. It was a constant reminder of the twin life I had lost.

Early on, his delusional ranting sometimes ruined holiday gatherings; upsetting more than the children. We loved Paul, but we were relieved to take him back to the hospital at the end of some visits. Visits usually ended in a pool of tears. As much as my parents, my siblings and I suffered from sadness, guilt and loss, we knew Paul could not live at home with us. Paul was very sick. We could not manage his 200 lb frame which still showed signs of the former football player he was.

As time wore on, we realized Paul would never get better. I also realized I did not “do it” to him. My parents didn’t “do it” to him. The drugs (PCP, Acid – anything he could get his hands on) probably triggered it and made it much worse. I tried to forgive myself for sometimes being happy. I cried less often and sent him cards and gifts on his birthday. I talked to him on the phone and visited with him when I was home. I sought help sporadically for my “chronic, low-grade, depression”.

Paul and the other patients displaced from the hospital closings were on only one track – to live independently. He was put into a transitional group home on the hospital grounds, then moved to another transitional group home within an “assisted” living complex, and then finally to his own apartment within the “assisted” living complex. He took cooking and other “life skills” classes.

At first I was overjoyed. He was finally out from behind locked doors and barred windows. I think about it now and marvel at how naive I was to think Paul was still going to be “taken care of”. We eventually learned that the assistance provided required that Paul ask for help, something he lacked the insight to do.

About a year after he started his new, independent, life, my sister Katherine visited and noticed Paul looked skinny. She hadn’t seen him in a few weeks. She eventually learned that his food stamps card didn’t work anymore. She found out he had been knocking on doors, begging for cigarettes and food. Another time, he was picked up by police because he was “menacing” people on the street, yelling at them, claiming they stole his liver. The police took him straight to the hospital.

After the food stamps incident, my sister Katherine met with Paul’s case workers and doctors. They were still talking about moving him to an even less supervised environment. It was mind numbingly absurd. In one breath the doctor acknowledged that Paul was so drug resistant that he would never get better. In the next, the social worker said that Paul was required to ask for help to fill out his food stamps renewal form, not the other way around. Were these people even in the same room with each other? They had no idea Paul had so little food. And now they were telling my sister that Paul would be transitioned to an even less restrictive studio apartment.

Katherine remarked, “Stray dogs are treated more humanely than the mentally ill in this state.” She thought he would die if they went through with it. They didn’t get a chance.

Paul’s condition deteriorated to the point that he was sent back to the state hospital. During this admission, we found out (again after the fact) he had "volunteered" for a drug study program. He was put in a special unit where they could monitor any side effects and took blood everyday to check on how much of the drug remained in his blood stream. He was a human guinea pig!

After he was released from the state hospital – again – he was placed in a 200 hundred bed facility called an adult home. Everyone there seemed mentally ill. They would mill around the halls and outside, smoking, or wandered the streets. There were no planned activities. You couldn’t give my brother anything of value as it would get "lost" or he would give it away, being generous or trading for cigarettes. There were times we had to ask the staff to clean his room because it smelled really bad. There were times when I visited him and other people were sleeping in his roommate’s bed. One of them, a woman, had a habit of wetting the bed. Paul again cycled in and out of the local hospital psych wards and the state hospital.

How could anyone think this life of Paul’s was better than when he was in the state hospital? During his last stay in the state hospital we practically begged them to keep Paul. We were told this was not possible.

During the 10 years after his initial release in 1998, Paul’s physical condition suffered as much as his mental one. He looked old beyond his years. The agony that my siblings and I went through during this period of Paul’s life far exceeded the agony we felt when he was committed. Ironically, we became friends with the new, mellower Paul. We loved the New Paul, just as much or more than we loved the Old Paul, our Tall Paul. While he was still very delusional, he didn’t lash out at us as much and would cooperate in his treatment. However, and this is important, this cannot be mistaken for Paul being able to live with us or his being able to live on his own.

A few years ago, I convinced my husband to move from WI to NY so I could be near Paul after nearly 30 years. I became number one on the list at the adult home to call if anything happened to him. I saw him almost every weekend. I took him bowling and to the movies. He would introduce me as his twin sister. I felt somewhat whole again.

Within six months after my move back to NY, he had two severe bouts of pneumonia resulting in hospitalizations. We found a nursing home that would accept patients like Paul (i.e. mentally ill). The idea was to give him more time to recuperate, without smoking. However, due to Paul’s chronic lung disease, a commonality among the severely mentally ill, the nursing home decided they could keep him permanently.

The nursing home staff had taken a liking to him. His nickname was “The Governor” because he said hello to everyone and shook their hands. They put him on the patch and we thought maybe, he would be OK. Just weeks after we got the good news that he had a new home, he was diagnosed with lung cancer. He passed away nine months later.

I am heartsick when I think about the life Paul lived. I get angry when I think that the last 10 years could have been prevented. I hate myself for buying him cigarettes. I love my siblings even more for coming together as a family during the chemo and radiation treatments. If nothing else, Paul’s purpose in life was to teach us the true meaning of family. It is both humbling and uplifting. My grief is still raw, but I know it will subside. I am not so sure about my anger.

The point of all of this, my telling Paul’s story, is to illustrate what one former patient’s life was like after the state hospital closings. After Paul’s roller-coaster ride of recurring psychotic episodes, trips to the local hospital psych ward, stays back at the state hospital and then back to the adult homes, it is clear to me he would have been much better off if he had stayed in a real hospital setting, or at least in a permanent group home, where he would have been more closely supervised. If we are to reform the health care system, we need to take this into account.


  1. Wow Ilene...what a powerful post....thank you so very much for writing it. You don't really know me but we've crossed paths as Vertebrats fans.....I just read every post you've written and am looking forward to more! With all the best for the New Year.....Cynthia

  2. Hi Ilene, I had wondered why you and Bill had moved from Wisconsin to New York and now I understand. It was wonderful to see you both again at the Vertebrats reunion in October.

    I'm happy you are both doing so well back east. Being a NY/NJ girl, the pull to come home gets stronger for me, the closer I get to retirement. My brother Matt is back on the radio again in Florida. He's so happy after a miserable year of job applications and rejections. He wanted to be in Champaign to see you all, but he was just starting his new gig and couldn't break away.

    Take care and may the new year bring peace and good vibrations. Mel Farrell

  3. Hey Ilene, holiday greetings. Love the post/article. I'd like to know more about what's better about the hospital setting because for many of us that has bad connotations. It sounds like your twin had a good hospital while he was there? Anyway, this is a side of your life I never saw and it's great to have it filled in. Keep up the posts! Jean Z.

  4. Ilene,
    You have summarized in a very human way, what we all experienced as Paul's brother. There was a need to reach out and be a part of his life, as well as the pain of seeing him live his life within the confines of "the system". If you multiply our experience by the number of people who have a schizophrenic family member, there are a lot of people living in pain. If severe schizophrenics could all live in a place more closely resembling Paul's final nursing home, where he was treated like a human being and taken care of to the level he needed, the world would be a better place.
    Much love to you Ilene. And Happy New Year! Monica