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Giulia on Seeking Adequate Mental Health Care for Her Son

Wednesday, September 1st, 2010

Giulia - 525

“I still can’t quite wrap my mind around how this city has impacted my story. I am sixty, divorced and live on Capitol Hill in a very nice neighborhood. My kids went to nice private schools. I run a good business. My husband worked for Congress. We had every reason to believe that our children would go to college, get married and have wonderful lives. We had no reason to think otherwise. I never gave poverty or mental illness a thought. It just wasn’t in my life. Then, my son was diagnosed with schizophrenia.

I never gave poverty or mental illness a thought. It just wasn’t in my life. Then, my son was diagnosed with schizophrenia.

“My son was good looking, popular, very well adjusted and a great student. People referred to him as the perfect prom date. In the fall of tenth grade, he started showing signs of mental illness. He started to ask me if I thought there was something wrong with his brain. He was really struggling in school and began to look odd. The psychiatrist said he was having social problems. The doctors said he would be fine, but he didn’t look fine to me. With time, he became more remote. He lost his affect and ability to smile and interact socially. He would hear voices and have delusions. Shortly after he turned 16, he drank a lot of wine and cut both of his wrists. When they took him away, he was screaming, ‘If you had to live like this, you would want to die, too.’ When I went to visit him, he really wanted to die. He asked me to just let him die. What do you do when your 16-year-old kid tells you he wants to die? We pretty much forced him into medical care. The medicines haven’t done much to help with his hallucinations. He doesn’t know what day or time it is. It has been like that ever since he was 16. He is 27 now.

“For nine years, I have cared for my son because this city does not provide adequate residential care for the mentally ill. My son has Blue Cross Blue Shield and if you look on page 17 of our policy it says, ‘These services are provided unless you have mental illness.’ They provide emergency hospitalization only and then you are shown the front door and given a map with D.C. shelters. There is a group home, but they are overcrowded and you have to be somewhat motivated to live in that environment. My son’s condition is such that he doesn’t comprehend what you are saying to him. That is how ill he is. He can’t sleep at night. He makes strange noises all the time. His behaviors are totally inappropriate. He’s not a good candidate for a group home. And the shelters, have you seen those places? They are pretty rough. When you have mental illness and you’re paranoid it is pretty difficult to tell someone to sleep in a shelter with 50 other guys.

“I just don’t know where my son is going to live if he doesn’t live with me. I buy his food, feed and cloth him and look after him. I am the only person in his life. I would love to work, but how am I going to leave him? He can’t fix his own food. When he tries to cook for himself, he leaves the stove on. I don’t think I have the energy to come home from work and clean up after him and cook and then start over the next day. Now, I spend my days taking care of him, trying to run a business, and campaigning a lot around the District because I am doing this all by myself with no help from the city. I have met with everyone at the Department of Mental Health, Medicaid, the District Courthouse. I thought I may be able to sue them for the lack of care, but supposedly they are not breaking any laws so I can’t take them to court. I haven’t gotten any real help from my city government. I am still shocked that this city provides no viable options for residential care for the mentally ill. People don’t realize what it means to suffer from mental illness. We focus on voting rights, but what about the people who are dying in the nation’s capitol from lack of proper health care. We can’t imagine how many people commit suicide because of mental illness.

“One of the problems with this illness is it is hard to get people to do what they need to do. I need help to get my son to realize that he needs help. Then, I need to put him in a place that is respectful. Not just five people sleeping in a closet with rotten food, but a beautiful environment where people want to go for care. There are some very good private rehabilitative places, but they are phenomenally expensive. I could move to Vermont where they have good state-run care, but I don’t know anybody there and I believe that my place of residence should provide these necessary services to its citizens.

“I would love to speak up more and have a podium, but I am so tired. I don’t know where people like Martin Luther King got his energy. I don’t want to spend my time traipsing around the city government and seeing if people will give me five minutes of their time to help my son. The bottom line is that it is exhausting. I resigned myself to the fact that this is what I am going to do for my life, but I worry about what will happen when I die. Now, I can’t have a social life. I mean, what are the chances of getting someone to marry me? My daughter is a teenager and doesn’t have people over. She tells friends that her brother is off at college. My oldest daughter is doing well. She lives in Alexandria and would love to have a life without mental illness and she does. She doesn’t really put in any time or energy into her brother. Even his father hasn’t had him over since he was 16.

“I’d love to change the world, but part of me wants to tell my son to leave and move off to a cabin in the woods by myself. That’s what I fantasize about. I am so tired and everything has been so hard. It seems like it would be a great relief to have a simple life where I am just responsible for myself. I have watched my son go into comas and seizures and try to kill himself. I don’t know how to get the strength to keep at it year after year with no help. I keep at it because I love him. What keeps me going is that I have a lot of compassion for him. I talk about how hard it is for me, but that is nothing compared to what he is going through everyday.”

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  1. If you know how difficult it is for him, why would you force him to keep suffering?

    Comment by JB — December 15, 2010 @ 11:01 am

  2. JB, what are you implying? How is her trying to take care of him “forcing him” to keep suffering?

    Comment by Golden Silence — December 16, 2010 @ 10:52 am

  3. it is such a shame the mental health care is not funded more. Mental Health is totally taboo. It is now where AIDS/HIV was in the early 80’s. I hope that sooner than later mental health can come to the forefront. Stay strong!!

    Comment by RegO — February 3, 2011 @ 11:43 am

  4. Hi Giulia,
    I feel your pain. My son suffers from schizo-affective disorder. He became ill before his 16th birthday. He was a straight A student top of his class with many recognitions for his achievements in Math and English and was good at baseball and football.

    Living in the State of Florida that ranks 49th in the country for mental health services becomes very difficult to deal with. It is a heavy burden to carry without community support for better mental health care. When I start feeling sorry for myself, I too remind myself that my son’s burden is much heavier to deal with.

    I pray for a cure in the future maybe through stem cell

    Thanks for posting your story. I am sure you probably feel the same way I do and that is: I often feel I could write a story about the past 10 years in dealing with my son’s illness and dealing with the current Mental Health System. Take care

    Comment by Carrie — July 13, 2011 @ 8:34 pm

  5. Hi Julia
    My 25 year old son has recently been diagnosed with schyzotypal personality desorder. The way you describe your life and your son seem some similar to my life. I am still luck that my son is partially independent but I feel so tired and frustrated. I don’t know how to go from one day to another. I am very lucky to have a good job in Florida but the situation with housing is pretty similar. Either I put him in some ALF where one day they served him bread with mayonese for breakfast or I have him in a studion apartment which my husband and i pay the rent for. There are lovely homes in florida but there is no way i can afford that. I feel tired and angry and wonder if this is what my life will be from now onw. It was nice to read about someone else who feels the same way. Thank you

    Comment by AVB — April 14, 2012 @ 9:26 pm

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