As I have mentioned before, the last two years have been the toughest yet in terms of my mother’s battle with Schizoaffective Disorder. Currently her disease looks a lot more like Schizophrenia as there has been no recovery from the crippling psychosis. In honor of mental health awareness week, I am sharing some of the struggles we have been facing recently.
Last time I updated, mom had been continuing to cycle in and out of the hospital. Not much has changed. She goes in to the hospital very sick and completely out of touch with reality, and she comes out in the same condition. Every time. She refuses to take medication because she is too sick to know better. In her mind, she is just fine. She is home a few weeks at a time, and then she will do something attention worthy that will cause the police to take her to the hospital for evaluation. The way the law works is that a mentally ill patient must be at risk to themselves or to others in order for the police to take her to the hospital. The police sometimes come out to the house three or four times a week, but they do not take her in. Usually, it is because a neighbor calls them because she had done something bizarre. Steeling flags out of yards and running down the street screaming is not exactly grounds for being “at risk to others”. It takes a lot to get them to take her in, and when they do, it is always becasuse she is putting herself in danger with her behavior.
About a month ago, I decided to go get an EDW (Emergency Detention Warrant). She had been home from another round at the hospital for three weeks and was really starting to make the neighbors mad. The police would not take her in. Dad was exhausted, and every day was something new and draining. She would throw away all the food in the house repeatedly. All of the decorations had been taken down and stock piled in the kitchen. The house was unlivable. Something had to happen to give my dad a little break. So I took off work and drove to Dallas and met my dad to get paperwork together. An EDW is not exactly easy to get. You have to be prepared. It is done by going before the Justice of the Peace and declaring under oath that you believe the individual is at risk to themselves or to others. If approved, the individual is detained and carried to a hospital for evaluation (the same thing that happens when the police take her). We knew it would only buy time, but deep down we were hoping for something new. Maybe, a new hospital or doctor that would enforce some medication or longer term care. We could only hope. We came very prepared. We had numerous police reports, pictures, and statements she had made to show the judge that she was a risk to herself with her behavior. He granted our request and shortly after two policemen followed us to my parent’s house to get her.
Mom was barricaded in the comfort of her room. The police had to bust through the door and knock over a dresser just to get in the room. There was so much stuff all over the place that everyone was falling trying to get to her. She was terrified. It broke my heart. Schizophrenia causes extreme paranoia. The reality that she feels is just as real as our own reflection. I hate seeing what the illness does to her. I cannot imagine the torment she lives in daily. Once she saw me, she started to cooperate and made me promise that I would come with her. As the police handcuffed her and put her into the back of the car, my eyes filled with tears. Why God? My mind wondered. This disease is the ugliest thing I have ever seen. I got it together and quickly ran inside to grab her a sweater. Finding a sweater for her felt like the only comfort I could offer. Helpless and depleted, we followed the police as they took her to Parkland Hospital in Dallas for evaluation. The car was quiet. Sadness and hope consumed me. Inside, I was begging and pleading for this time to be different. We needed a miracle. All I hoped for was a chance to speak with the doctor. A change to explain what has been going on and see if he would do something new. In all these years, my dad has only got to speak with a doctor once. Mom will usually not allow us to speak to the hospitals because her illness causes her to not trust anything or anyone. The law protects her wishes, even when she is completely out of touch with reality. This can be crushing to the caregivers who know the patients better than anyone else.
When we arrived to the hospital they had taken her back to the emergency room. She only allowed me to come back. It felt unfair to leave my dad in the waiting room. They had her seated in a chair in the hallway. She kept telling me that her brain hurt. I braided her hair and she clung to me as she suffered through the torment of her own brain.
Three hours later, still in the chair in the hallway of the ER, no one had offered her water. No one had offered her food. Two other patients who came in after her were give beds. We sat. After about five hours, we were moved into a room. No nurse had checked on her. They had a tech sitting in a chair watching her and we ended up having to ask her for food. Mom got a cold sandwich while the other patients ordered hot meals from the kitchen. Eight hours had gone by and no doctor had shown. The ER doctor could not do anything. We had to wait for a Psychiatrist to see her. It was now late in the evening and I had to make the two hour drive home. I was so frustrated. All I wanted was to talk to a doctor in person. With tears in my eyes, I left a packet of information and a letter for the nurse to give the doctor. The nurse explained to me that there was not enough psychiatric beds or doctors and that she may not even see the doctor that evening.
My tears were flowing as I kissed mom goodbye. I found dad waiting as I walked out of the hospital. He had waited all that time. He said he couldn’t leave his girls.
All that work and no doctor ever called. She was sent to a new hospital the next evening. She stayed there for three weeks. I made multiple attempts to speak to a doctor, nurse, or social worker. Nothing. She refused medication and was released.
There we were again. Back to the same spot. Two weeks has gone by and she got herself back in the hospital again this week. As usual, we expect her to be released soon with no change, but I am never without hope. I have been doing a lot of research. I have talked to lawyers, social workers, therapists. It seems the only way to get long term care and enforced medication is to be a criminal. There are not enough psychiatric beds. Texas has the fewest amount of beds in the nation and very little money is spent on mental health. If my dad divorced her (which is what her illness wants), she would still get half of his money. She would most likely end up homeless. An other option, is to hire an attorney and pay thousands and thousands of dollars to try and gain guardianship over her. They would have to be divorced and this would still not ensure that medication was enforced. I would be responsible for her care and a “nursing home” like facility averages around $4,000 per month.
All too often, families who are caregivers for those with severe mental illness are left helpless. They fall through the cracks because their loved one’s are not criminals or severe threats. The law allows those that are even severely mentally ill to make their own decisions. There should be a line. Once evaluated, a psychiatrist should be able to determine if the patient can make reasonable decisions for themselves. In my mom’s case, she is not. Every decision she makes comes from something she talks to in her head. A female named “God” to be specific. My mom is also “God’s chosen daughter”, she talks to the FBI and CIA, she knows everything about NASA, and we all have “monitors” in our brains. Yet the law says she can refuse medication, she can say if or when or who the hospital speaks to about her care, and she can do darn well whatever she pleases as long as she is not literally hurting herself or someone else.
So what now? We are still searching for a missing link. We are trying to find something we have not done yet. We are not giving up hope. We are learning how to fight this battle with joy, hope, understanding, and patience because that is the only option.
I miss my momma. My daddy misses his wife.