It’s three in the morning and I just got home from the hospital. I’m crying in the shower for at least the third time this week. I’m tired, I have to get up for work in three hours, and I know I’m not going to be in any condition to give the presentation I’m supposed to give, but that’s not why I’m crying.
I’m crying because it’s just that heartbreaking to be the sister of someone so severely mentally ill that they can’t see their own affliction. Because I see the waste of what his life could have been. Because every day I’m reminded that no one cares about how badly he needs help except for me.
“He was seventeen when he was handcuffed by police officers and loaded into an ambulance.”
My brother and I were close growing up. I looked up to my big brother like many little sisters do — I liked the music that he liked, learned to pitch a baseball so he could practice batting, and tried to follow him around the neighborhood on my bike. I didn’t even get mad that time he set me up to take the fall for letting off firecrackers in the backyard.
As teenagers, our closeness gave way to signs that something was wrong. My brother’s angry episodes turned to blackout rages and his sadness turned to soul-crushing depression. He became withdrawn and obstinate, refusing to go to school, and his temper put holes in doors and walls. He was seventeen when he was handcuffed by police officers and loaded into an ambulance. The diagnosis was “Manic Depression,” now known as bipolar disorder.
“He fell into his illness and the person I knew disappeared.”
The medication helped for a while, but he stopped taking it before he turned twenty. By the time I finished college, his illness had clearly escalated, the mania having become so severe that he spent most of his time closeted in his bedroom talking to himself. He refused all doctors and medications. He was of legal age and my grandparents didn’t try to force the issue because, I think, they didn’t know how. For my part, I carried on with my life, heedless of how rapidly he was deteriorating.
Several years later, both of our grandparents had passed away and I was left as the sole custodian of my brother and his illness. I believe that our losses drove him to the edge of his endurance. He fell into his illness and the person I knew disappeared. He became wracked with delusions, frequently waking me up in the middle of the night screaming about people coming into our house and attacking him. He blamed me for letting them in and became threatening.
In the grip of mania, he would embark on online shopping sprees, running up credit cards to buy goods that he would stack, unopened, in our living room. He would panic at the suggestion of allowing a repairman into our house to replace the faulty modem, certain that they were coming in to install spy equipment. I begged him to go to a doctor and get medicated again, but he refused. One day, he put a loaded gun to my head when I tried to call the police. I was truly afraid that he would hurt me for the first time in my life.
“They put him in jail where he ultimately served six months with no mental health care whatsoever.”
Incarceration without mental health care only made his symptoms worse.
This was to become our first lesson about the limitations of mental health care in the US. After my brother put the gun down, I was able to leave and contact the police. They put him in jail where he ultimately served six months with no mental health care whatsoever. He didn’t even get a three-day mental health hold for evaluation. In my state, it’s up to the police to decide who goes to a hospital and who goes to a jail at the time of arrest. My police department didn’t believe in “excuses” and no amount of begging for him to get help changed that.
At sentencing, the court ordered probation with mental health treatment upon his release, but no probation officer or court official followed up when he didn’t attend the appointments. To me, the message was clear: no one cared about him or his condition.
Fearing for my safety, I realized that my brother couldn’t live with me anymore. The guilt was incredible, but I was getting dragged down into the abyss with him. I gave him an ultimatum: he would get help and stay on medication or he would find his own place to live.
So, terribly ill and largely unable to function as an adult, he went out into the world and found an apartment. I helped him pay his utilities, but his income was limited to a small monthly SSI check and the worry about money drove his paranoia. He refused to pay certain bills, claiming that he “shouldn’t have to.”
He got evicted from two different apartments because they increased his rent at renewal time and he stopped paying altogether as a revenge tactic. He ended up in a series of motel rooms that he couldn’t afford, still refusing to believe that he needed to seek mental health care. I researched extensively and concluded that there was nothing I could do short of filing for guardianship, a move that would have made me legally responsible for a person that I could not control, reason with, or have in my home safely.
“He begged me for help and agreed to check himself into the hospital.”
After bouncing around for several years, my brother hit rock bottom. He could no longer afford motel rooms and he couldn’t find an apartment that would accept his evictions. He begged me for help and agreed to check himself into the hospital. It was agonizing to sit in on his intake interview – his description of nightly delusional episodes with shadowy figures waking him from his sleep and whispering threats was terrifying.
His paranoia that everyone was trying to hurt him and his rapid, largely incoherent, blank-eyed rambling painted a picture of a desperately ill man. I thought surely this hospital would see his condition and keep him until he was well again. My relief was incredible.
But they released him after just three days, putting him out the front door barefoot and in the midst of an obvious manic episode. He slept in his car in front of my house for almost a week because I wouldn’t allow him to come in. I know my brother and, if I had let him into my house, the only way he would have left it again would have been in handcuffs, probably after threatening me with a weapon.
I convinced him to try another hospital and this time I took him a little further south, to a facility with a better reputation. In the space of a few months, he visited this hospital twice, staying for six weeks the second time. He received a new diagnosis – Schizoaffective with Bipolar I and severe delusions – and tried a number of medications. He also participated in an outpatient program where he saw a doctor and a caseworker. I will forgive anyone who thinks we’ve arrived at a happy ending. All this time period really accomplished is teaching both my brother and I some very hard truths.
“His delusions were ‘fixed’ and they could not be reversed with medication.”
The harder we tried to get help, the clearer it became that my brother was on his own with his demons.
Most states in the US don’t have the infrastructure in place to care for someone as ill as my brother, even if they’re willing to get help. Six weeks seems like a long time, but it wasn’t nearly long enough to treat someone in my brother’s condition. Even if the hospital could have kept him longer, insurance wouldn’t pay for it. There were no long-term facilities to transfer him to.
Outpatient care facilities were also painfully limited, often lacking in enough experienced doctors and caseworkers. My brother’s clinician specialized in children and clearly had no idea what to do with my brother other than refilling his prescriptions. His caseworker was so overloaded that she didn’t have time for him. Even if she did, programs for the mentally ill are sparse – he couldn’t even get help with housing or groceries.
Worse still, we learned that treatment for my brother had come too late and too little. At the end of that six-week hospital stay, the doctor declared that his delusions were “fixed” and they could not be reversed with medication. My brother would just have to learn to live with his torment. After months of trying, there was no real improvement. My brother was clearly unimpressed and stopped taking his medication again immediately.
“He languishes in his illness, a prisoner of his own mind, constantly on alert against imaginary enemies.”
I managed to find him a tiny apartment with a very understanding landlord, a rarity, and I’m lucky to be able to continue to provide some financial support. I offer regularly to take him back to a doctor, but he refuses.
He languishes in his illness, a prisoner of his own mind, constantly on alert against imaginary enemies. I can’t bring him home for fear of his delusions bringing him to violence.
And I’m crying in the shower now, helpless in a society that doesn’t care about people like my brother.
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It is always comforting to know that you are not alone.
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Amy is a freelance writer offering blog posts, website content, and technical documents to help your business succeed. She has a graduate-level education in the sciences, owns a home baking business, and has extensive experience in technical writing in a research environment. She is excited to write on a wide range of topics, include hard sciences, home baking, single living, current events, pets, and health and wellness.