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

Nikki and Kevin

NIKKI AND KEVIN - PART ONE by Nikki Landis

Kevin got out of the hospital Friday and was admitted to another hospital yesterday. When he got out Friday he was agreeable to the new treatment plan. Monday morning, when it came time to call and make some appointments, the agreeableness was gone. He got very agitated, started yelling, and broke our back door.

He left and started calling people trying to have our kids put in foster care. He's decided I'm a terrible mom and he can't take care of them, so they need foster parents. Unfortunately, the police showed up and questioned me in front of the kids. So they saw and heard too much. And his breaking the back door scared them badly enough that they don't want to see him. I worked for years to shelter them from the majority of his bad symptoms and, within 12 hours, it was all undone.

Yesterday, Kevin texted me not knowing what was going on, and he didn't seem to remember much of what happened Monday. He went to his psychiatrist and was admitted. This morning, I called him to see about meeting with his social worker about housing or residential treatment and he's a totally different person. He is not sick. I'm the problem. If we get a divorce then he will be fine. He has a whole alternate reality version of Monday that sounds like a typical marital fight — nothing like what actually happened.

Kevin is diagnosed with schizoaffective disorder, bipolar type, and severe PTSD (combat related). He can't come home. We've reached the point where I can't protect the kids from him anymore. But I'm a fighter and I'm not willing to throw in the towel. I believe he could become stable again. 

The first time I read I Am Not Sick I Don't Need Help it was a library copy. Then I gave away the copy I bought. I overnighted a new copy that will be here tomorrow. This is a different situation than I've been in before. I'm more detached and he is sicker. While I wait for my new copy, his anosognosia comes and goes. He accepts that he is sick until it's time to see a provider. It's the same pattern every time. When it's time to see a new doctor or therapist he freaks out and causes major drama. Within a few days, he comes up with a plausible story of some typical fight couples have. Then he decides he's completely fine.

Have any of your loved ones accepted long-term that they are sick? This has become the biggest barrier to his care but it is evolving so fast that I can't keep up and I need advice.

To be continued.

Nikki and Kevin

Nikki and Kevin

I'M SURE THEY MEAN WELL, BUT...by Tania Irie

I’m sure they mean well when they tell me to “be grateful” but.…

Do people ever stop to think that maybe my being unhappy with my current situation is exactly what is motivating me to do better and be better so I can have better? I won’t settle. My feelings are valid, regardless, and I don’t need anyone to tell me any different.

You be grateful for whatever you want. I’ll be grateful when things start getting better for me. Right now, I’m very uncomfortable with my life and circumstances and still I’m learning many things through the struggle. I’ve been homeless for eight months. In the beginning, I felt somewhat hopeful and thought to myself, don’t worry, things will get better and I will figure it all out. It will be all right. But now, I’m not so sure. I was naive then. 

Right now, I’m busy trying to lift myself up out of this mess by changing the things I cannot accept rather than “accepting the things I can’t change." Follow your own path and I will follow mine. To each their own...

Tania

Tania

RYAN'S STORY - PART THREE by Donna Erickson

THE STIGMA OF MENTAL ILLNESS CONTINUES

Ryan was getting more delusional, and we had the crisis team come in to evaluate him. Jeff met them at the group home, and told them that Ryan needed to be hospitalized. But this time was a little bit different. Ryan never went off his medications, and what he had in his system was doing some good. We noticed Ryan came in and out of psychosis repeatedly, instead of remaining psychotic. One minute he was talking about his six wives and six children, but later on, he knew that was not true. Yet, the delusions kept coming (and going), and we still felt he was unsafe in the community. During this period, Ryan had signed up for classes at the local university, and was issued an ID with a different name. Nothing ever came out of that.

The crisis team concluded that Ryan wasn't bad enough to be hospitalized. We disagreed. We felt Ryan was tricking them. According to the crisis team, Ryan needed to do something in danger to himself or others, before he could be hospitalized. I believe that the individuals who make these laws are clueless. If they were to experience the unbearable stress this puts on the families — not to mention, the absurdity of inviting danger — the laws would change. Right now, the patients have the laws on their side. But the laws are not always in the patients' best interest, and that leads me to believe that, unless you've gone through it, you can't understand how bad it can get. The bottom line is, we just want to keep our loved ones safe, but the system doesn't let us. We are at its mercy.

We had been through this so many times by then, that we knew it didn't get better on its own. I tried calling Ryan's psychiatrist, but kept getting voice mail. I left a long, detailed message. I explained that the crisis team was not seeing what Jeff and I were seeing. Ryan was able to answer all of their questions, but soon after the crisis team left, Ryan was insisting his real name wasn't Ryan and his birthday was in July, not August. Finally, I totally lost it on the phone. I broke down and cried, begged, and pleaded for his doctor to section him. I asked, "Why do we have to wait for something horrible to happen? Please help us help our son now." I got no response.

So... something horrible happened. I got a call from the group home manager explaining that Ryan had removed and disposed of a bunch of smoke detectors from the group home, and the building owner was pressing criminal charges against Ryan. I was furious. This all could have been avoided, if someone had just listened to us. The worst part of this experience was witnessing how the system set Ryan up to fail — and then blamed him.

Ryan was able to remove the smoke detectors from common areas in the building (he did not remove any from client bedrooms), over a period of several days, and dispose of them in the dumpster. The fact that nobody saw this happening, doesn't say much for the staff. A lot of the time, they are on their cell phones or watching TV.

Finally, Ryan was hospitalized. I got several calls from the administrators of the group home, informing me that Ryan would not be allowed to return. He would have to go to Respite - a step-down program sometimes used for DMH clients when they’re released from hospitals. When I asked who had made that decision, I was told there was a team involved — a team of DMH and BAMSI (group home vendor) administrators. They even threatened to evict him.

While hospitalized, Ryan got in touch with the Disability Law Center and the Committee For Public Counsel Services. He was advised not to go to Respite. I did some research and discovered that Ryan has a lot of laws protecting him. The group home cannot just tell him to leave. That's his home. It would necessitate a court hearing. When I spoke to a contact at DMH, I was told there would be a meeting for us to attend with Ryan. I made it very clear that I didn’t want Ryan moved from his group home, mainly because most of the other homes are in very unsafe areas. I never heard back from DMH, and there never was any meeting.

Ryan appeared at a hearing with a court magistrate about the criminal charges. Ryan apologized to the court officials and the fire chief. He explained that his illness affects his reasoning, judgment, and sense of reality during a psychotic episode. He described how these behaviors are uncharacteristic for him when he is stable. The court decided that the charges would automatically dismiss with no police record in six months, if Ryan stayed on his treatment and stayed out of trouble. We all breathed a sigh of relief six months later.

During every psychotic episode, abusive incident, lack of response from clinicians, or difficult period trying to access appropriate services for my son, my heart breaks a little bit more. The people who are supposed to be helping my son have sometimes made things worse. One of the BAMSI administrators told my husband, that we’re not doing Ryan any favors by educating him on the system. I really didn't appreciate that remark. Jeff explained that we aren’t the ones educating Ryan. Ryan is very smart and educates himself. Ryan has gotten workers suspended and terminated because he knows his rights, and because those people deserved it. For that reason, he’s seen as a threat by some administrators.

We need to remember that people with severe mental illness have been dealt a very tough deal in life. Through no fault of their own, they have a disease that prevents their brains from working properly. They should be treated no differently than a diabetic needing insulin or a cancer patient needing chemotherapy. But, the stigma of mental illness continues, due to ignorance. I hope and pray better days are ahead for my son and others who require mental health services. It's certainly not their fault, and we need to help the public understand that.

Tewksbury State Hospital, Tewksbury, Massachusetts - Ryan's home for more than a year

Tewksbury State Hospital, Tewksbury, Massachusetts - Ryan's home for more than a year

A MOTHER'S DAY LETTER FROM TRAVIS (IN SOLITARY) by Travis Christian

Dede,

I got a laugh out of your story of Pat. I like that you can talk about him. I lost my dad in 2008 to pancreatic cancer. There's so much I wish I can say and do with him. I have dreams of him often and I get to talk and do things with him there. I'm happy he isn't suffering. Pat isn't suffering anymore either.

Thank you for not giving up and being a warrior for people like Pat. You are so courageous. You are an excellent writer. I can tell by the letters you write.

The story of your mom made my day! I haven't been exercising as much and I keep making excuses, so I've been feeling kind of anxious, but after reading that story of your mom, I can't just sit and do nothing. I hope you mom's leg heals up quickly. She is amazing. I don't know anyone who is 100.

It sounds like you are very intelligent and creative because you said that you and your brother put together a video collage for your mother. Did you go to college to learn how to write? Because I would like to write a book about my life, but right now it's just a crazy dream.

I am in Sacramento. I have my guitar in my cell. Who is "Cider House Rules?" I've never heard of them. Your mom is such a trouper. Her birthday sounds like it was a memorable time.

Who knows, Dede, you may have saved my life and all the people who sent me mail. I'm not out of the woods yet. I still struggle everyday. It's just not as intense. I thought I wasn't going to make it. I want to help you with your blog. Maybe I can be a success story about an inmate with mental illness who thrives. However I can help you that's how I want to help you.

Well, I hope you're having a good day and that some excitement comes your way. Happy Mother's day. I wish you the best.

Love, Travis

If you would like to write to Travis, his new address is:
Travis Christian BB8099 b-1 109L
California State Prison, Sacramento
PO Box 290066
Represa, CA 95671

You can send books to Travis from Amazon and Barnes and Noble.

See more stories about Travis on this blog:
Feb 3, 2018; Feb 6, 2018; Feb 10, 2018; Feb 27, 2018; March 14, 2018; April 18, 2018

#SteppingUp4SMI  #TreatmentInsteadOfJail

Travis and his mom, Kathy, on Mother's Day 2018Kathy says, "I'm very grateful on this Mother's Day because I got to see and hug my son, Travis, for the first time in three  years. Thank you for all who write and pray for my son."

Travis and his mom, Kathy, on Mother's Day 2018

Kathy says, "I'm very grateful on this Mother's Day because I got to see and hug my son, Travis, for the first time in three  years. Thank you for all who write and pray for my son."