- Posted May 6, 2014 by
Syracuse, New York
This iReport is part of an assignment:
Going public with mental illness
Who will care about little Dan?
Little Dan is my nephew, he is 25 years old and suffers from paranoid schizophrenia. His life since he was about 8 has been a sad and uphill battle of trying to get help for him.
The biggest problem we faced as a family was who would take on his problem and advocate for him that he might have a secure, coherent, safe and happy life. For years I watched from a distance as his mom and dad struggled to understand what he needed and also live in frustration as the system made decisions about his care that did not seem to produce any better or helpful results. They allowed him to quit school which only isolated him more. He had no friends and was afraid to go to school he was bullied daily.
For some reason Dan liked to call and chat with me and shared his thoughts. When he was about 11 it was usually about what he wanted to be when he grew up, I noticed his ideas seemed a bit grandiose and he was very disorganized with his thoughts as well as slow but I always knew he was a quiet boy and just thought he was young and was sure the school was helping him with whatever special needs he might have. Prior to this I only knew that he had started having trouble with wetting the bed so I knew he was on some type of medication! When he came to our house he never played with the other kids and just wanted to sit and listen to the adults chat. Again I just assumed he was being helped. It wasn't until years later I learned what a nightmare his life had become. His parents had taken the suggestion of the social workers and school to let him quit.
So now his world was total isolation unless he saw the doctor or family stopped by. He grew more and more frustrated and hostile. Which was never his character he was always very kind polite and gentle. My sister in law at this point had another child and the social workers and doctor decided it would be best if he moved out, he was 18.
He was mentally ill and now completely alone in an apartment with only bare necessities. It didn't take long before he forgot to take his meds, he wandered the streets and was no where to be found at times. The police picked him up in a woman's back yard some 15 miles from where lived. He did not have a car. His life became a cycle of being in and out of the hospital and emergency room! They would send him right back to the very thing that wasn't working! He became suicidal and had very little will to live or get help. He became completely catatonic and when I stopped by to check on him he was dehydrated bloody lips and delirious.my husband and I took him to McDonald's to get him liquids and food. He ate and dra little but then we asked to take him to the hospital, he agreed but when we got to the emergency room he wouldn't respond to anyone about his name, the clerk told us because of privacy we had to wait out in the hall.we tried to explain he was catatonic and would probably not speak but we were met with much coldness and asked to leave. When she couldn't get a word out of him only then were we asked to hel give pertinent information to help him. We also were approached by his Ag team person, someone who was hired by the county to check on him every day and make sure he was ok. He told us he tried to find him but couldn't but it was good to see him.
There is much more than I can write about in this short story but at this point Little Dan was about 20 and I knew something had to be done or he would die, or possibly hurt someone else by wandering in the street or unwanted places or his so called magic sword was something to be concerned about. I had to have him transferred to a bigger mental health facility in Syracuse in hopes that they had more to offer. He was transferred and was admitted for quite awhile but then his release day came and they sent him to a halfway house. The problem with that was thisfacility was geared toward drug and alcohol problems not mental illness. Little Dan was expected to do chores and clean and nor,al duties to the average person. Howver Dan want average, if his meds are off or need adjustment he cannot function or be cooperative. The rule was if you are not cooperative you get kicked ou. Which he did. His doctor in our small town who was now back to caring for him got mad at him and allowed them to kick him out. I had to pick him up and take him to get food for his apartment he was now in again ,with no bed or furnitur. I called the social worker and only then did someone come out and help him get the items he needed . He has social security but ithat gets cut off to if you are in theopspital or no address. I don't know how he managed to talk the land lord into letting him back in. At this point I realized we could not rely on the system to get him help or be responsible for his care. The problem was his mom and dad were not capable of advocating for him. I couldn't let him move in with us because his illness was not one that I would be safe alone with LittleDan. Even though his nickname is Little Dan he is not little and my husband traveled every week. I had to think creatively, something had tò change. Dan' life was getting worse, everything we bought him would be stolen by other people or they wold simple tlc him out of it. At one point a couple was living in his apartment and using his bd and food and whatever lease he had. I didn't mind at first they stemmed to be helping hi, he liked the cocoa notions and the houswas clean. But that quickly chaged, the friends started leaving him behind but using his money and the house was filthy and Dan's pillbox was full regularl, which let us know he wasn't taking his meds. He started calling the police constantly looking for his wife(which he did not have) and was scard to be alone so he ended up in the emergency room all the time. This simply was not working and was costing the taxpayers a lot of money for not even an uncle of progress. So like I said I had to be creative. We told Dan he had to go to Syracue to get help which he refused of course but we told he had no choice tha he had given us permission to help himth night we were at the hospital when he wouldn't talk but he signed his name to the proxy sheet. We exaggerated a bit. Once we had him in Syracuse I requested that he needed long term care and could not be on his own.he would thrive there because the program was great and they had the money to spend on helping and experimenting with different meds. No one had ever gotten his medication stableized.but they did in Syracuse. He had a routine was fed and even had outings. Swimming, gym and was helping to care for the animals at the SPCA. I could not believe the difference and it was amazing and heartwarming to see Dan enjoying his life. But that was going to get cut off because he technically wasn't a resident of that county. I was hearbroken. But hen I realized mentally ill people can move to. So I tol them if they tried to send him back I would get him an apartment there anyway so they would end up having him as a resident anyway.
I wasin awe of some of the things I was told along this journey one of which by a doctor at a family meeting that It really didn't bother Dan as much as it did me the way he lived. My reply was well there are a lot of people who think it doesn't bother cats or dogs to live out in the streets or the cold with being able to hunt for food they will be fine. Which we all know is not true and in fact there are a lot of good people who fight daily for them to have a better life, shouldn't Little Dan have the same? I am surprised that even doctors don't really understand the mentally ill that well or not at all. If they only knew thy too are only one brain cell not firing right away from the same plight. This is a terrible dies ease that displays itself in many different forms but it's all in the brain and it's as real as cancer or heart disease or any other disease. It deserves our support and attention. And people with mental illness need to be with people and cared for