A Broken System
The Mental Health System is broken. It is not functioning well, it is disconnected, lacks congruity and relies on short visits from doctors, not prepared to see their “patients” and a long list of drugs that they think will work within 4 days. They don’t, medicine takes time and should be accompanied by a healthy diet, good sleep, exercise and trust. This is now the 5th hospital stay for my son in two years. Each visit lasted one week to 5 weeks. He was always discharged right when our insurance was about to end. We didn’t notice this until the pattern emerged after the third stay. My son knew this too, he has learned to be institutionalized, he knows his rights and what he can refuse and not refuse. Now I don’t want the reader to think I believe all mental health care workers are bad or incompetent, but the system in which they work seems to be like the mind of a schizophrenic; many voices shouting over one another, people doing things that overlap, a system that doesn’t believe the patient, or the caregivers input. they simply want to stabilize and get them home. Trying to work with them leaves me so exhausted and stressed I just want to find a way to start my own facility. Get about 10 million dollars in grants, buy land, build housing, base the model on a system that incorporates the spiritual element as well and use the money so people can actually afford to come live there. A self sustaining facility, growing their food, nutritionists, fitness trainers, doctors who want to stay and mental health nurses and aids that love people and don’t get cynical. A wild fantasy for sure. There are a few I have found some that sound promising ( except the spiritual part) but they run about 26,000-30,000 per month. That’s right, per MONTH. Who can afford that? Average stay is one to three years.
This last hospital visit was the worst. The facility was the nicest, it was the cleanest, almost posh, but the workers were detached and didn’t even know my son’s name. I came to visit and no one talked to me, acknowledged me or my son, it was so odd. Not a hello, or “is this your mom”? or “this is how he is doing”….they called him by his first name ( a big clue that they didn’t even know he went by his middle name). Visitation was a joke, one hour at the worst time of day ( three times per week). My son, for the first 3 and 1/2 weeks was throwing up his meds. I told them he was, but they didn’t believe me. They said that couldn’t happen. But he was pacing so much his socks wore out and he lost weight. We had to buy new pants and socks, but still they told me there was no way he wasnt getting the meds into his system. I explained about his personality, but the doctor told me he couldnt listen to my ideas based on a hypothetical theory. I said, it isn’t theory, he is waiting you out, he won’t comply because he know you will release him in 30 days. The doctor did take that to heart and told him he would keep him longer. Then an amazing thing happened, my son took his meds and began to participate. He slept through the the next four days but stopped pacing and barely ate. He needed the sleep I am sure but now he was a zombie. Now by this point the dosage was so high because they thought he wasn’t responding, he turned into a walking zombie. they were happy because he stopped pacing and actually slept longer than one hour per night. I requested they drop the meds back down to entrance levels and the doctor actually agreed with me and lowered the dosage, but it was still very high and because he refused to give blood they couldn’t test the depakote levels. We knew that day 30 was arriving and they would release him because our insurance was up, I asked for a 4 day extension because my husband was still in Korea for an army conference and I didn’t feel safe bringing him home alone. We haven’t been safe, it has been dangerous, emotional, violent, erratic and we feel like we are fighting an unseen fiend who is preying on our son. Everyone in the household is on edge and the tension is unbearable. This, unfortunately, feeds my son. He , like an X-man mutant, receives all our tension and feeds on it. We try to conceal this life from others, but it pours out like water you try to hold in the palm of your hand.
We then had to follow up with the local law mandated appointments with the county run center. My son would not speak, paced the halls, was verbally abusive and obviously mentally unstable at the time. I could not make sure he ingested the meds. ( to the novice reading this, I assure you that following around a 21 year old man and watching him to ensure he keeps the pills down can be dangerous, to avoid violent conflict I ask and trust and then watch behavior, if he is acting out I tell him I have to call 911, that usually makes him compliant, I just do not want the reader to think it is as easy as watching him swallow pills or stand outside the bathroom, what you deal with in this situation is not rational or reasonable, you must throw out those techniques) But the county behavioral health did NOTHING for us. I begged for help, I needed in home help, a nurse or a mental illness specialist to help me or a home or living facility he could stay, anything. But nothing exists. She spent 15 minutes typing as I talked, because my son “saw fit” that I should speak and not him”, of course everything I said “were lies and needed to be deleted” She was typing continuously while I talked, it was a loud keyboard and extremely annoying, I don’t know how my son didn’t come flying across the table. Want to be tense?, just type everything a person is saying while they talk, don’t look at them or listen, just type type type….maybe a new system could be installed, voice recording and then have someone type it later? I dont know. Just don’t irritate mentally unstable people more please. I asked what I should do, I was a little scared, she said ” he said he wasn’t suicidal or homicidal so she could do nothing” I actually said that, remember he wasn’t speaking…. She said I could take him to the ER but they would only think he was an angry teenager, but he isnt, he is 21, almost 22. So alone in a vast sea of undulating waters that pulls us down to the bottom while we fight the current trying to get a breath we go on. I left and wanted to sit in my car and cry. But I knew my son would feed off that emotional surge and I had to remain calm.
I had really hoped the doctor prior to discharge would use his leverage, and tell my son in order to be discharged he would have to 1. allow them to draw blood and run a full blood panel screen to check his system, 2. run a drug screen and 3. they could order a brain scan so we could look at this neurologically and rule out anything there. He denied all three. He said the brain scan was only for traumatic brain damage and would not help my son’s case, ( not true, I have several academic papers from Harvard, Mayo clinic etc) and they show schizophrenic brains on scans can show us a lot. He hasn’t had a blood panel since this started three years ago, we have no idea of white cell counts, and all other levels,. I was so upset because the leverage was needed to get compliance. We will try on our own to find a neurologist and get this done this week if possible. I will have to find my own care givers by searching alone yet again. And just for the record, I am a member of NAMI, I support them, but the support group I attended was so depressing I just couldn’t go back. I sat with women twice my age who had been taking care of their sons for 25 years and they were no better. They were in and out of hospitals , broke, non compliant with meds and many had been in jail. I am just not ready to concede. I would rather be in denial for a while longer , I would rather choose hope and and work to make a new system. I will await my miracle aslo.
My husband and I have decided to just tell people he has cancer when he acts strangely, we could just say he has brain cancer. Then people wont be so scared and judge him or us. It is crazy to say that, but if he was terminally ill anywhere else in his body people would be kind and helpful, but if it is a sickness of the brain, then it is our fault or his fault and they avoid us, judge us and leave us. ( most don’t say that out loud, but you hear what they say, people don’t’ keep secrets.) People just can’t handle unresolveable situations. Because it is so exhausting and you never feel like it will end, others just don’t want to be around that. I can’t explain it, but we have lost friends because they think we should fix this and move on and if they don’t see results then we arent doing what needs to be done. They don’t believe me when I tell them how broken the mental health system is, they just don’t believe me. And they don’t think it could ever happen to them because they are good people and good parents., that cause idea again. No one would ever blame a parent for cancer or diabetes or autism, but mental illness…..there is a stigma attached to that. I just have to smile and try to educated them. If they really want to know I have books to read and they can search. I have one dear friend who is already searching, reading and doing all she can to help, she was with me at lunch with my son and it so shocked her she went into full blown “I must help her mode” Thank heavens for friends like that. No judgement and the power to want to make changes.
Be that friend, be that person who will step in and help. Be that person that writes the congressional leader to fund grants to open facilities, who will stand in the gap with fervent prayer. I am so blessed to have that friend, I am not alone. Christ sustains us and sends us people who will love and care for us. Even in the mess. Because this is messy and weird and unworldly.