November 16, 2010
In June of 1975, I was 38, a working mother and wife. Living in Kentucky, my husband and I were busy raising our three children. Our oldest, a son, was 20 and serving in the Army. Tim, our middle child, was nearly 18, had just graduated from high school and planned to attend the local community college in the fall to study architectural drafting. Our youngest, a daughter, had just finished 7th grade. I was energetic and had a full client list in my own hair salon, a home-based business. My husband was also self-employed and owned a local barber shop.
Tim had moved into an apartment with a few of the neighbor boys that he had been friends with throughout his childhood. They had spent summers riding bikes, building forts and scouting together as children and as teenagers, gathered at each other’s homes playing cards, table tennis and basketball. Tim was above average in height, being 6’-3’’, and slim built. A nice looking young man, Tim had a sense of humor that reflected his sensitivity and respect of others.
Tim called late one night and asked us to come get him, saying that he was afraid and in trouble; it was unexpected and alarming. After bringing Tim home, the three of us sat at the kitchen table and talked into the early hours of the next day.
Tim was admitted to the hospital the next morning, for 6 weeks, followed shortly afterwards by another hospitalization of 4 weeks. He was given several prescriptions to alleviate his symptoms of paranoia and the voices he heard. He was released with instructions to attend school part time, and work part time, to keep active physically and take his medication. He was to see a therapist once a week.
Never having any exposure to brain disease and the effects of psychosis, my husband and I had to absorb many new concepts and develop new expectations for success for Tim. We learned early that the doctors were convinced medicine would correct the damage to his brain and prevent it in the future.
Since Tim did not think he had a disease that needed treatment, he rarely took his medications. He was able to communicate and get a job, but he could not hold one for long - his paranoia and the voices he heard would interfere. He could keep his behavior together for short periods of time, making it appear that he did not have any symptoms. He tried to live at home, but that did not work because of the conflicts that would come from his paranoia and delusions.
By the end of 1996, at age 39, Tim had been living with paranoid schizophrenia, basically untreated, for 21 years. He had never attended college or held a job for any length of time. I had reached the age of 60 and still worked full time; my husband and I had become grandparents (our daughter’s children) and we enjoyed time spent with our grandchildren. Our oldest son had been diagnosed with cerebral palsy and lived in a local boarding house for veterans. He also had a brain disease, showing symptoms of mania and impulsive/compulsive behavior with some delusional thoughts. But unlike Tim he recognized the symptoms as a disease, and was willing to take medication.
Tim had been hospitalized multiple times, and no longer would take medicine unless he was in the hospital. He would accept treatment while in the hospital, because he was told that if he took the medicine, he would be released. Tim did not connect the reduction of his symptoms with compliance with treatment. He still was not aware that he had a disease. Tim spent a great deal of time walking the streets. He was a familiar sight on the downtown sidewalks, his long legs making short work of the city blocks. He had developed an addiction to cigarettes, and a taste for soft drinks. Tim did not drink alcohol, smoke pot or misuse any type of drug. He was very tan and slim and looked healthy and fit. However, a short conversation would dispel that notion because his delusions, now quite fixed, would enter into his speech quickly, and his thinness was not because of care for his diet, but because he ate very little due to his paranoia, and would not keep food in his apartment.
When not in the hospital, Tim was offered treatment at the local outpatient facility, but had to find his way there, on the appointed day and time. He would go to the office, but most of the time would not accept treatment. Many caring social workers, psychologists and psychiatrists tried to help Tim, but they were limited by what they were allowed to do by the mental health laws in Kentucky.
During this time, an administrative judge explained to me that he could clearly see that Tim was not stable enough to live unassisted. However, he had no choice but to discharge him from the hospital because the doctor had indicated that he was not a threat to himself or others and the law would not allow the judge to keep him hospitalized against his will. By this time he had been hospitalized by court order eleven times.
Now, in 2010, I am 74, retired and living with my husband in the same house we’ve lived in for the majority of our married life. Our oldest son, age 55, is now living in a veteran’s long-term care facility, his cerebral palsy having progressed to where he is confined to a wheelchair. We visit him weekly, laundering his clothes for him and staying informed of his treatment plan. I’ve always been struck by the fact that our oldest son recognized his symptoms as a disease, and was willing to take medication. Our grandchildren are in college and keep in touch through Facebook.
Tim, now 53, has been in a new program of mobile outreach services that began in 2007. His assigned social worker visits him at his apartment and helps him with his errands to keep him living independently. Up until this time, I had provided his safety net to make sure he had some food, clothes and shoes. Years ago he was homeless and walked/hitchhiked to Buffalo, New York during a harsh winter storm. Since then, I have worked to ensure that Jim would not be homeless again, helping him obtain assistance for housing and food. Many times, due to his paranoia and voices, he would be dropped from programs and I would follow up to get him reinstated, working through red tape and a bureaucracy that allowed the most vulnerable of our citizens to be treated as though they were a subclass and worthless.
The mobile outreach program helps to ease the burden of caring for Tim, but still has not changed the treatment he receives for the disease he has lived with for 35 years. Although he has been hospitalized by court order through mental health warrant or petition (MIW) 32 times, he has never received treatment for any extended period of time. The last time Tim was hospitalized and released I noticed that he was not any less psychotic and it shortly became apparent that he had refused the recommended treatment while in the hospital. Although Tim has never been violent or arrested for any crime, of the 32 times he was picked up by a court order to be taken to the hospital, only the last time was he allowed to ride in the officer’s car without being handcuffed.
This past summer Tim was assaulted by a gang of youths and urged by the police to press charges; Tim was concerned that he would not be a credible witness because of his many “arrests”. He mistakenly believes that he has a criminal record because he has been handcuffed and taken to the hospital on so many occasions.
After 35 years of psychosis, Tim’s brain has been damaged to the point that he cannot mask his illness, so he is ostracized and victimized in his community. If Tim could have Assisted Outpatient Treatment, ensuring a therapeutic time of treatment on the appropriate medications, it could be possible to reverse some of the damage that has occurred to his brain, and he could benefit by improved brain function. The years of malnourishment and neglect are taking their toll as he is rapidly losing weight; his jeans held up by a belt fastened in the tightest notch, but still hanging on him; his teeth broken off and decayed, his mouth ravaged by too many cigarettes and sodas. He no longer can walk the miles he used to. If he does try, his breathing is labored, and racked with coughing.
The way our laws are written in Kentucky, legally, Tim can continue in this state of decline until he dies. The law says he can refuse treatment, so we have to stand by and watch him die by starvation and self neglect.
Tim still does not know that he has an illness, and he does not understand the consequences of refusing treatment. With the current legal system, how many other mothers of children diagnosed today, will spend the next 35 years of their lives watching while their loved one slowly dies?
