NIKKI AND KEVIN - PART TWO by Nikki Landis

So this is what severe mental illness does.

My husband was my dream man. He was wonderful. We had fun and laughed and traveled and made plans. And then, slowly, I lost him. It started in little bits. Barely noticeable. I thought I was imagining it. Then he convinced me I was the crazy one. Because that's what they do... anosognosia. It's like trying to convince someone with Alzheimer's that it's 2018. Or that they have Alzheimer's. You can't. You can't convince someone who is psychotic that they're sick. 

Honestly, I thought I was losing my mind. After all, he was working, right? He could carry a gun and arrest people and do paperwork, right? But he was barely functioning. Not getting his work done. And paranoid. Crazy paranoid. He started telling everyone I was cheating. I was staying out at the bar all night. But here's the thing - I don't go to bars and I certainly never stayed out all night. I had no idea he was spreading these things around. And his work buddies had no idea it wasn't true. Because who thinks "psychosis," right?

Slowly he lost more of himself until he had a full and complete breakdown. It was terrifying and heartbreaking and yet hopeful. Because we had answers. And knowing the problem is half the battle, right? But it's not. Because the psychosis kept coming, harder and faster. People don't understand. They don't know what to say. They have all these ideas about mental illness from movies. Movies about mental illness are mostly crap.

You want to know what serious mental illness looks like? Go talk to homeless people because, for weeks at a time, Kevin lives in his car. He is right now. He is currently sleeping in his car. He won't shower for days — by choice. He says he just can't do it. He is completely unable to take care of our children. And you know how sometimes people with Alzheimer's hate their family members? Yeah, that too. Aimed squarely at me. I'm Satan.

I have an entire list of treatment facilities, programs, and therapies but he has to go, and he won't. He wants to live in a car. This is what nobody tells you about serious mental illnesses like schizophrenia, bipolar and schizoaffective disorder.

Many of those homeless people you see with mental illnesses? They have families who love them and want them home. They aren't kicked out or banished from the family. They can't get treatment because they're too sick to know how sick they are. Their families are members of FB groups and websites that post pictures of homeless people all over the country so they can find their loved ones. Sometimes an ill family member gets paranoid and takes a bus out of state. Sometimes the group home responsible for their care actually sends them off on a bus without telling the family. Yes, this happens much more than you would guess. Sometimes they're like Kevin and are too sick to live at home but refuse a hotel or friend or family member. But many times they are loved and missed and looked for and prayed for.

Kevin was an inpatient twice in April alone. Kettering hospital sent him to a Wilmington parking lot in an Uber and didn't even let me know. I requested that the social worker try to get assisted housing for him. He needs help and he won't let me help him. But they didn't even try. Don't even ask about the VA. I'm not ready to talk about that situation yet. 

When Kevin is relatively stable and not sick, he tells me to talk about his story. He's not ashamed and neither am I. I guess raising kids with autism gave me a thicker skin. But people need to know. Before Kevin got so sick I didn't know. He's sick and there's nothing I can do to help him. I am putting the kids first, and I pray that someday he is in recovery and says I made the right decision. I know the old him would say I'm making the right decision. I miss that Kevin. 

Schizoaffective disorder, severe chronic PTSD and OCD. That's the latest. But it doesn't really matter. All serious mental illnesses (SMIs) are a variation of Alzheimer's, and we don't let people with Alzheimer's live on the street and claim they have a civil right to choose it. We see them as sick and fragile and needing care. 

My heart is breaking. Our kids' hearts are breaking. Please pray for us, and if you have a family member with a brain disease/mental illness, rethink how you talk about it. I have never been ashamed of my boys with autism, and there are few good reasons to hide SMI. Talk about it without stigma and the stigma disappears.

Nikki and Kevin

WHAT ARE YOUR FAMILY'S NUMBERS? by Deborah Fabos

Deborah's son, James, and her grandson, Sean Michael.

My son suffers from bio-neurological brain disorders. Without the right treatment and support, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders control his thoughts and his actions. His untreated symptoms also control our lives.

My son has schizophrenia, anosognosia (in laymen’s terms, "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD.

So what does all this translate into? A preventable tragedy that was almost impossible preventing.

What are our numbers? 1:6. That’s our family’s conservative ratio.

Now what does this ratio mean? It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him.

Our lives have been significantly affected by his untreated or treatment resistant medical illness. We live with constant emotional stress from the daily trauma and drama of his severe symptoms —  including psychosis and crisis evaluation teams. We experience situational mental illness, like depression or PTSD, due to the hopelessness and isolation of caring for someone with a severe brain disorder when they're not being properly treated and their symptoms are not under control.

We've lost wages from jobs we've had to give up to care for our loved one and from having to move from one place to another due to stigma. We've missed chances of advancement at work and taken lower paying positions in order to be available to meet the needs of our son. We've faced family stress that could lead to divorce and further financial and mental decline of the entire family.

It means that my son’s illness has affected more than just him. It's also impacted his school system, our local sheriff’s department, the juvenile courts, and our relatives who helped provide financial aid to get him on the ‘fast track’ to treatment.

His illness dictated his and our lives — how we spent our time, our money, and our emotional resources. There was nothing left over for our needs. We were all consumed trying to save him, but we're among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment.

What was the cost for his intervention and treatment? Here is a start at some of our other numbers:

Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son.

Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him, and the stress of not being able to find timely treatment for him. I paid not only with money, but with my mental and physical health.

Probate Conservatorship: $6,000.

One month in a dual-diagnosis facility before his SSI started up: $6,000.

Qualified therapist who didn’t take insurance: $160.00 per hour once a week.

Equine therapy which worked the best from all the therapies we tried: $160.00 per session per week.

‘Fast Track' — by-passing the waiting list for medical recipients and getting into an outpatient treatment facility that held the most promising form of treatment but didn’t accept our insurance: $250.00 per appointment for two years until, finally, they accepted our son's Medi-Cal.

Blood monitor company: $150.00 per month. We’re going on our seventh year now.

Licensed nutritionalist: $120.00 per visit.

Independent blood test for mercury and other toxins: $180.00.

The list goes on and on. Our son's been in therapy since second grade to work with the behavior we were trying to deal with daily.

We spent and lost thousands of dollars. We have little retirement saved and my husband and I are 57. It was worth every penny and every sacrifice. When we look at and enjoy our son today, there's no price we can put on his life or on how close we all are now.

The problem is, why should we have to pay such a high price for medical treatment for our son? What about the families who don't have the resources we did to secure early intervention and compliance to treatment? What happens to them? What are their numbers? How much worth can you give to a life?

What if my son decides to be noncompliant in the future? What would our fate be then? All this affects and still concerns my whole family. My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted us.

What are your numbers?

There are no statistics that include family numbers in their studies. We're the ones they don’t know about or talk about. We're more invisible than the ones we advocate for. It’s up to us to unify and speak out in one voice for what we need — for our rights to get appropriate treatment for our loved one's medical condition.

It’s their illness but It affects us all.