Dedicated to Fred. You left us too soon, but taught us enough for a lifetime.
We missed the early signs.
I can’t put a date on the first time we suspected a problem. I was in my early teens and Fred was probably about 17, so just about 40 years ago. Fred was a normal kid, an awesome athlete who excelled at every sport he played, but around his senior year he seemed to be angry all the time and would come and go at home as he pleased. We suspected drugs. When someone you know and love begins to slowly change before your eyes, no one thinks, “Hmmm, he must be mentally ill.” You think drugs, you think alcohol, you think of any excuse but mental illness.
Unless you have witnessed schizophrenia firsthand, you can’t possibly imagine the fear, the frustration, the anger, the sadness, and most of all, you can’t begin to understand the hopelessness you feel for your loved one. It’s an ugly fight, and the reality is that few ever win the battle. Schizophrenia will eat you alive and it takes your entire family with it. The lucky ones will manage to function in this world, but they still don’t fit here.
After Fred died, I was cleaning out a few drawers in his room and came across legal pads he had filled with notes and drawings. As I read the writings and saw page after page filled with row upon row of dots, it became clear to me just how tortured his mind must have been. I began to wonder if he ever had a moment of peace.
I decided to share these so that others might understand how fragile a mind can be.
* * *
One of my earliest memories of Fred’s illness is of him running down the stairs and telling my parents that God told him to collect $20,000 or he would have to burn the house down.
I was confused and petrified. When I looked into his eyes, I got scared because what I saw wasn’t Fred. Even at my young age, I knew that Fred was not in there at that moment.
Shortly after the first incident, he attempted to throw a piece of furniture through his bedroom window. My parents had no choice but to call the police and request that Fred be brought to a hospital. At the police station, the dispatcher, in front of my parents, got on the radio and requested an ambulance to pick up “some wacko” and get him to the hospital. I can’t begin to imagine my father’s anger and hurt at hearing the dispatcher refer to his son as “some wacko.”
From that moment, Fred became part of a system that really had no clue how to deal with him. I am not faulting anyone; it is simply a fact. The 1970s and ’80s were hard on the mentally ill, and in many ways, things haven’t changed much. Fred was repeatedly put in the hospital for short stints and either drugged for 24 hours a day or just released after a day or two, as if his mental illness would go away like the flu.
As his behavior worsened, he would disappear for days at a time. He sometimes came home and threatened us. He became increasingly paranoid and would accuse us of controlling his thoughts and mind. It is important to note that he never once hurt any of us, although we didn’t know if he would, and believed he was very capable of doing so.
I went from feeling sorry for him to trying to block him out of my life. I am ashamed to say that I avoided him at all costs and fought with my parents because I felt that they should just throw him out. He disrupted my childhood, he disrupted my time with my parents, he disrupted my life, and I wanted it to end.
Coming home from school one day, I opened the door and found Fred sitting on the steps with a family photo album. He had a red marker in his hands and was placing an “x” on the faces of my parents. I will never forget the fear I felt when he looked up at me and said, “I’ll give you ten seconds to get out of the house.”
I backtracked out of the door and waited in my car for my parents to come back.
The hardest part of this illness is that it is so unpredictable. One day Fred would be fine, the next he would be agitated and sullen. When Fred was worried about something, he would pace all day and all night. He would pace in the house and he would pace outside. He wouldn’t eat and he would smoke like a chimney and drink coffee nonstop.
Eventually, he was committed to Greystone Park Psychiatric Hospital for a while. More than once, Fred managed to walk away and show up at our home. We would let him in and call my father at work, who would come home and try to talk Fred into going back. Meanwhile, we sat in fear and prayed he wouldn’t do anything.
* * *
When my other brothers and I had moved out and gone to college, my parents decided to buy a new house. They moved out and left the old one empty until it sold.
One night, my friends went by to pick up some things we were storing for them and when they walked in, Fred came barreling down the stairs screaming at them to get out. A few nights later, my parents received a frantic call from the realtor who was showing the house. He said that when he went upstairs, he saw a man sleeping on the floor in one of the bedrooms. It was obvious that Fred had an attachment to the house that kept bringing him back. As his writings make clear, change could easily paralyze him. Fred needed routine in his world and if we mentioned change of any kind, his agitation would come on full blast.
My parents somehow talked Fred into moving near them and found him an apartment a few blocks away. He was now fully consumed by this illness and there were no more lucid moments. He accused us of controlling his thoughts and his mind. He tied white sweat socks around each of his wrists because he believed aliens wanted him to slit his wrists with a cigarette lighter. He began to wear a dirty winter coat in the middle of summer. His hair was long and so filthy that it was matted and wild. He would go into the store across the street, buy some food, and when he got back to his apartment, throw it away. He believed all the food was poisoned. My parents would stop in to clean and check on him and found the garbage can full of unopened packaged food, even cans.
When they visited, Fred would often be locked in his bedroom and many times didn’t even know they were there. Sometimes he would come out and tell them to leave. If Fred wasn’t in the apartment, they would wait for him or go looking. Sometimes they found him walking aimlessly around the neighborhood. Whenever I saw Fred walking around with those socks tied around his wrists and that matted hair, it broke my heart. I can’t even begin to know the pain that my parents felt.
One night, Fred got arrested for panhandling, and when my parents went to pick him up, a policeman said to my brother, “This is a nice town and we don’t want people like you here, so stay away.”
* * *
One night we received a call from a very understanding nurse at the hospital who explained that Fred had been standing in the middle of the street just staring up at the sky. Because he looked homeless and had the socks around his wrists, the police took him to a hospital and Fred agreed to treatment. The nurse explained this was a good thing because Fred would get the help he needed.
The nurse was right. After about a month or so of intensive therapy and the right medications, Fred was a changed person. He was taking Prolixin injections every six weeks and it seemed to be working. The only downfall was trying to find the right dosage, and sometimes he would get dizzy and fall because the drug causes low blood pressure. That was a bit scary, but it was amazing to see him transform into a neat and clean-looking guy.
From that point on, I never saw Fred angry or aggressive again. In fact, he became very docile and gentle. He and my father became very close over the next few years. They would talk for hours and were good company for each other. Soon after, Fred moved in with us and adjusted fairly well. He could walk around the neighborhood and go to Wawa for coffee. He liked to buy scratch-off lottery tickets and would walk everyday to buy one.
But even in Fred’s best moments, the schizophrenia still showed. He smoked and drank coffee excessively and was still very hyperactive. He often spoke loudly and when he was excited, his volume would rise. He still didn’t care about his appearance, and he became agitated easily.
Although his symptoms were always a part of him, he had days when he managed to control them. Families caring for a loved one should keep this in mind: You have to accept that what you have may be the best that you will ever have. We are truly grateful for the time that we had with Fred. You take what you can and accept it, as hard as that might be.
* * *
In the year 2000, my father passed away. It was hard on us all, but it took the biggest toll on Fred. He not only lost his best friend, he lost his link to the world and reality. We tried to get him to talk about it, but he pretty much shut down. A few months later, while cleaning his room, we discovered a full bottle of his medication. He had stopped taking it. I called a counselor at the clinic and he said if Fred was off the meds for that long and was not hearing voices, we shouldn’t worry too much.
Over the years, Fred found another friend in Karen, his therapist, whom he spoke very highly of. Outside of family, no one else had ever bothered to get to know Fred. He once told me that Karen had said he could tell her anything or talk about anything with her. I remember how happy he was to have that relationship with her, and we always encouraged him to talk to her. If something was bugging him, we would call Karen and ask her to find out what it was.
* * *
We never dreamed that Fred would leave us at such a young age. He was only 57, although in some way we knew the years of smoking, the coffee, and the illness would finally take him. I think Karen put it best when she said, “Schizophrenia will eventually take your life.”
Looking back, Fred’s illness had changed him during this last year. His hygiene was slipping again. He went from showering every day to us having to keep on top of him. Many times, he would shower and put the same clothes back on. His hair was getting wild and he would sometimes just cut it himself, but eventually even that stopped.
While doing the wash one day, I noticed Fred had stopped wearing a belt and instead used a piece of rope. He said the belt didn’t fit him anymore and even after I bought him new ones, he still used the rope. We bought him new sneakers, but he would wear the old ones until they were falling apart.
Physically, he looked terrible. His color was not good, his cough was constant, and he was sometimes withdrawn. He started sleeping a lot and was too tired to help us with anything.
On Thursday, January 10, 2013, Fred kept his appointment for his two-week shot with Karen. Later that day, Karen and I spoke and she said Fred had put off blood work since the summer. He had cancelled two previous appointments already.
Later, I found many prescriptions from his doctor for blood work that he never went for. It became clear that Fred was petrified of doctors and hospitals, especially during the last year. His blood pressure was a bit high and he panicked over that. The subject of going to a doctor was touchy. He was so terrified that we didn’t push it.
Looking back, I guess I knew something was off that Friday morning when I saw him. He looked terrible but insisted that he felt great. I didn’t make a big deal out of the blood test; I just said if he felt like going Monday morning I would take him. I’m sorry now that I ever mentioned it. He must have been so scared that he couldn’t process that fear or even tell us about it.
He had been sleeping a lot, which worried my mother. Friday was no different; he slept most of the day. That night he had his absolute favorite dinner, chicken parm and pasta. Fred had a healthy appetite and could consume a double Whopper in under a minute. He ate like a football player and never gained a pound. But that Friday night, my mother said she knew something was wrong because it took Fred a very long time to eat. It was as if he was forcing himself. After he finished and was headed upstairs, he stopped and said, “Thanks Mom, that was really good.”
My mother went to bed at her usual time, around nine p.m., and as she went by Fred’s room saw that he was asleep. Sometime during the night, he got up and sat at his desk, put his head on his arm and quietly and peacefully passed away.
That’s how we found him. He deserved that peace after a lifetime of torture. To die in a hospital was his biggest fear and I am thankful that it never came to that. We know and believe that when he left this earth, he left all his sickness here and went to Heaven free from all his burdens and torture, and that is what gets me through the day.
* * *
When I read about the voices in Fred’s writings, I understood why I found several Walkman radios hidden within his drawers. It most likely had something to do with the voices that tortured him. By placing the Walkmans under his clothing in the corners, he must have been trying to silence them.
I also found this poem Fred wrote, I don’t know when. Reading this, it seems as if he almost knew that this battle could never be won.
* * *
To learn more about schizophrenia and get help, visit the National Institute of Mental Health website.
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