by Ilene Flannery Wells, founder Paul's Legacy Project
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 naïve 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!
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.
They 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 how 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 healthcare system, we need to take this into account.
The information on Mental Illness Policy Org. is not legal advice or medical advice. Do not rely on it. Discuss with your lawyer or medical doctor. Mental Illness Policy Org was founded in February 2011 and in order to maintain independence does not accept any donations from companies in the health care industry or government. That makes us dependent on the generosity of people who care about these issues. If you can support our work, please send a donation to Mental Illness Policy Org., 50 East 129 St., Suite PH7, New York, NY 10035. Thank you. Contact firstname.lastname@example.org Contact DJ Jaffe, founder http://mentalillnesspolicy.org.