Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn't easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.

We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically -  face when schizophrenia moves in.

Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.

And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend.  And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.

Other families are not so lucky. And tomorrow, we might not be either.

Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.

But wait, there's more.

• There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.

• What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).

• What if he gets sick? What if we lose coverage for his meds?

• What if something happens to us?

Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.

Laura Pogliano and Zac

My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy  with Parents For Care.

But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:

Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.

Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017

I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017

My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017

I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017

I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. -  Antionette, Feb. 2017

Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?

This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug. 

What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family's openness about Ben's mental illness.

Recently I came across this guide from Juno Medical, and it explains it all really well!   

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

...

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction - or no reaction at all - to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

• Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER! 

Another Mom's Story of Schizophrenia in Her Son - and Suicide

Book Review: Losing Aaron

I keep thinking of the line in a Phil Ochs (google him:) ) song:

There but for fortune go you or I...

This book is a painful reminder of how fortunate we are to have gotten some extra time with Ben - and of how schizophrenia can happen to any family - rich, poor, educated or not, you name the adjectives. Schizophrenia does not discriminate.

Every family member with courage to share their story about mental illness in a loved one opens the door of understanding just a bit more - and that can help reduce stigma and spark action to help those with mental illness and their families. The author begins with the fact of Aaron's suicide, so we know where this is headed and yet we still root for Aaron - and his Mom, Dad, sister and stepdad - to get the support, education, and understanding needed to change the outcome we know is inevitable.

Alas, that doesn't happen - but Ingrid Blaufarb Hughes opens her heart to us as we share in her confusion, frustration and helplessness in the face of a devastating illness that seems to steal the soul of someone you love.

The pearl in the oyster here is the love the family has for Aaron, and how they do their best to support him in the only ways they know how, even though he consistently refuses the medication that might have changed his life.

I know that love well, as it is what keeps our family going too - and we know we are fortunate that my son Ben follows the "house rules" of taking his medication each day, under our supervision. Any day he could choose not to (as he, like Aaron, doesn't think he needs it) - and we have seen too many times where that would lead us: straight to the hospital, and down the chute to square one again. This book renewed my gratitude for the extra days we have gotten with Ben - days that this author's family was denied. Her pain and love, and her struggle to also live her own life as writer, wife and mother - are honestly told.

It also reminds us of the importance of education, support and acceptance - the earlier the better. Could Aaron have been saved? I don't know. But I know I am so grateful (thank you, NAMI Family-to-Family) for education I got into Ben's illness, which equipped our family to do more to help. It doesn't always "work", but education increases the odds of success.

Tips to Help Connect with Your Family Member with Mental Illness

Tips to Keep in Mind

This is excerpted from Chapter 28 of Ben Behind His Voices.  Along with our story, I share guidelines with information to educate, support and help. Happy Imperfect Holidays!

Randye

The Precarious Jenga Tower of Life with Mental Illness

My son's life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling - as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben's help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them - and soon after that disappeared. She told Ben that he was an "absolute inspiration" to her son because he takes his meds -  and has held a job he loves for over two years.

What she hadn't realized is this:

Sure, Ben takes his meds - but he still doesn't think he needs them. He is "compliant" because it's a house rule we enforce - by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We've done it before - it is risky and painful to all - and so Ben knows we mean what we say. But the whole "compliance" situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It's right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out --- and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.

Treatment Pays Off in Schizophrenia, Even if "Unwanted"

One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says "I am afraid of my own son now." According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said "no thanks." And nearly killed his parents.

My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work.  He has been a server at the same restaurant - full-time - for over two years.

In Ireland, a man is finally committed to a mental health facility - after killing his parents with an axe. This treatment comes, obviously, way too late.

My son's phone constantly rings with texts from friends, who are trying to arrange a "game night" at home fortomorrow evening. Now he has friends again - but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.

Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to "go back on meds", after which he moved back in with us - with strict rules to "follow psychiatrist instructions." Why? There was no other way we'd allow him to live with us.

some of the latest info on schizophrenia treatment

The truth is: treatment makes all the difference. That's why we, Ben's family, "require" it in order for him to live with us. And, yes, we supervise it - staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen - messy bedroom, sloppy compliance with curfews, uneducated financial decisions - even though Ben is 34 years old.  Not always fun, but we'll take this level of challenge. It's annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have "problems" like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day.

Oh, we are not without fear. We feel like our life is lived with fingers crossed - because two days without treatment would change everything. We've seen it happen before.

Ben is still rebuilding his life - and his treatment is a huge part of that journey. Without it, all he has built could topple like that first straw house in the story of The Three Pigs.Treatment works - and in our case it simply cannot be "voluntary." We won't allow it.

We know what we'd have to do if Ben were to suddenly refuse treatment - refuse to allow him to live with us - and it's terrifying.We've done it before, much earlier in this process, before we understood his diagnosis. Ben was homeless for five months when he was 19 - and the threat of having to live in a shelter again is what got him to agree to treatment a decade ago.

Since then, he has slowly reclaimed his life - with the four pillars of community, purpose, structure and (yes) treatment. If any one of these pillars should crumble...well, let's just hope that never happens. Because right now Ben has a life. As he recently said to me, "I finally like who I am right now. I have a life I'm proud of. And if meds have something to do with that, so be it."

…but not disaster, if we catch it in time!

Wahoo! Does he mean it? I can't be sure. He has said this before, right before he'd been placed in his own apartment five years ago and left to "manage his illness alone." The result was the eighth hospital stay, during which his "without meds" behaviors became uncharacteristically belligerent.

So we still will adhere to our process for treatment, simply because it is working. Ben deserves treatment - and he deserves to have it supervised and reinforced if that's what he needs. There are those who will argue that he has a right to "refuse treatment."  Well, I say he has a right to have a life. With treatment, that life is filled with family, friends, love, work, a social life, a chance to mature and make decisions for himself - and a baby niece whose face lights up when she sees her Uncle Ben.

Treatment is far from perfect, but it can work. Keep improving it, make it available, fund it, enforce it. So no family has to ever be afraid of someone they love. 

The "Interfering Family" and Mental Illness: Some Helicopters Save Lives

I never wanted to be a helicopter parent.  When my kids were younger, I often responded to their problems with a “mean teacher”, “unfair boss” or “fickle friend” with a well-rehearsed “wow, that must be tough. How are you going to handle it?”  This was not easy, mid you; parents want to fix things. But I did my best, and the “hands off” approach usually yielded the best results in terms of self-sufficiency.

But when your child has a mental illness, all bets are off – especially in times of crisis.  Although most of the laws in this country deny our family the right to “interfere” in my son’s life, we do it anyway. At least, whenever we can – if we feel we must.

Ben is 33 years old, and was diagnosed with severe paranoid schizophrenia at age 19, after years of chaos and uncertainty. We tried letting him “experience his own consequences” for years before that, with results that were ineffective at best, disastrous at worst.

If you live in our town, you might know Ben now as the best server in a local restaurant, where he has worked for nearly two years.  He’s also the one presenting his latest poetry in community college Creative Writing class.  You might see him at Starbucks, just hanging out with his morning coffee, or doing karaoke or bowling with friends.  But, not that long ago, he’d have been the one wandering the streets, or the halls of the psychiatric unit at our local hospital – unreachable, glassy-eyed, talking to his voices.

How did he get from hospitalized to hired? I give Ben a good deal of the credit. He got there in baby steps, and kept reaching higher.  But, to be totally accurate, our family gets credit too, for insisting upon treatment and “interfering” each day to supervise until, as in the guiding grip when your child is leaning to ride a bicycle, we feel we can fairly safely let go.  We strike balance – or try to – every day.  Do we “let” Ben purchase a used car? Handle his own finances? Do we wake him for school or let him experience the consequences of oversleeping? These decisions are small compared to the big one: do we insist he take his medication every night? If he refuses, do we enforce our rule that he can live with us no longer?

The answer, for us, is YES. That “house rule” is not negotiable. The “law” may say we can’t require Ben stay in treatment, but our “house rules” say we can.

Right now family rights in mental illness is in the news, as part of proposed law HR2646, The Helping Families in Mental Health Crisis Act.  In hearing the stories of families who have lost loved ones to mental illness, or who have been attacked by loved ones in crisis, I am reminded of how lucky we are to have Ben in our lives, and stable – for today. Each day feels like borrowed time, but we gratefully embrace each one.

It wasn’t always like this, though, and may not be again…if his treatment stops. In the past, our “interference” has thwarted disaster many times. Here are some times I’d prefer to forget, but cannot:

1999: Ben drops out of high school, after a few years of increasingly odd and isolated behavior. We are “not allowed” to interfere. We suspect mental illness, perhaps depression. We are “not allowed” to insist on medication, as Ben is over 16 years of age. We do pay for years of therapy. We are allowed to do that.

2000: After ten months of success in an independent living program out west, Ben asserts his independence by smoking marijuana and decides to take control of his life. We practice ToughLove and letting him experience his own consequences. Though he does call once a week, and asks us to pay for a therapist (which we do), Ben becomes homeless and sleeps under trees in the cold Idaho winter months.  We do not “interfere.” He is that homeless guy wandering around talking to himself. Later that year, we do interfere, and Ben comes home with the agreement that he will see a psychiatrist and follow treatment.

2000-2003. Ben’s cooperation is spotty, and hard to enforce.  Seven jobs, few of which last longer than a week or so. Therapists insist we are “too involved” and should back off, let Ben live in his own apartment. Of course, we are allowed to pay for it.   Our “interference” helps him find a place to live. We drive him around to find an apartment that will accept a 19-year-old kid with messy appearance, no credit rating or job, and allow a month-to-month rental agreement. We help him move in. We drive him to school.  We watch him fall deeper into psychosis, helpless to insist on treatment. We wait for him to get sick enough to be helped.

If Families Have Support, They Can Provide Support

2003. The year of five hospitalizations for 21-year-old Ben.

• First time, he was “staring” at a child in a diner. Without us, he might have been arrested. With us, he was finally admitted to the hospital. Eight days later, he was about to sign himself out – which he was allowed to, even though he had refused treatment. We interfered. We applied for, and received, conservatorship – and the right to medicate (but only for as long as he was in the hospital). Ben improved.  Ben was released, temporarily coherent and hopeful for his future. We lost our rights to help him. Ben went off his meds as soon as he was back in his apartment.

• A week later, he placed a bag of tobacco into his waistband to keep both hands free to keep shopping. He was off his meds, confused. He did not leave the store – but the police were called, and Ben was arrested for shoplifting. With our interference, the charges were dropped. Without it? He might have spent time in jail, with all the emotional and other life consequences.

 In the years following, when not in treatment, he was almost arrested several times more, always when off his meds:

• being “too friendly” at the mall – talking to strangers, in a place where he’d had great childhood memories.

• Singing on someone’s front porch, where he thought an old girlfriend lived

• Eating a bag of chips in the middle of a CVS, because he’d been wandering for 40 hours and was hungry, but didn’t want to shoplift.

In 2011, after my book Ben Behind His Voices was released, Ben himself was “released” from the group home where he had lived for seven years. Why? He was “doing too well.” During those years there had been supervisors PAID to “interfere”, and that had taken the burden off of us. Ben didn’t love it there, but it helped him grow up by being away from our parenting except on weekends. But, when he did so well that he actually landed a part-time minimum-wage job, he was “promoted” to his own apartment, unsupervised, where it didn’t take long for him to go off his meds. If we hadn’t “interfered” that time, he might have died in his own apartment – he was afraid to leave, was not eating, and had missed a week of the job he loved  (though he managed to call each workday to say he didn’t “feel well.”). We drove the streets all night, looking for our missing son. We were told no one was “allowed” to intervene by going to Ben’s private apartment. But we insisted on help – we screamed for it, interfered enough to get the police to go to Ben’s door, and he was admitted to the hospital once again – for seven weeks, until he would agree to go back on the meds.  This, too, took family “interference”, in partnership with the Chief of Psychiatry and Ben himself. We got lucky.  Ben had survived the “independent living” experiment. Many do not.

Ben now lives with us again, and house rules prevail even if the “law” does not permit our interference. We stay up every night to make sure Ben takes his meds. Other than that (and other House Rules of cleanliness, non-smoking, courtesy etc.)  Ben makes his own decisions – and has earned the right to. Because we have interfered in his life, he has been able to develop a life, one he recently told us he is “so proud of.”

So, yeah, we interfere - because Ben lives with us, and we can.  But if he were to decide not to follow the House Rules, our family has absolutely no legal recourse to help him continue his success. Who will help him if/when our family cannot?

Without his “interfering family”, my son has been homeless. He has come close to being in prison. He has been mugged - twice. He has been left to die –all in the name of “patients’ rights.”  Indeed, that is where many of those with mental illness are today. We closed the hospitals years ago, but didn’t replace them with support.

Helicopters can be for emergencies too – and no one would ever criticize their usefulness when they hover for a good reason. Give families of those with mental illness the support and education they need to make good decisions about when/how to help. And give us the legal right to interfere to save our loved ones.  Let us hover, and interfere if we have to. Lives depend on it.  

What if Target's Sweater Poked "Fun" at Cancer?

What if it said “Christmas cancer. My spending is growing uncontrollably”?

Is really "just a shirt"?

This week, social media has been abuzz with two "holiday" issues so far: the Starbucks Cup ( and there's not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. "Obsessive Christmas Disorder.

"Mental Health Advocates are up in arms about this "joke", which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say "oh, get a life, it's just a harmless joke."

But what if the sweater read:

 I have Christmas

Cancer.

My spending just keeps growing out of control.

I ask you, what then? Would anyone be supporting Target's "right to make a joke"?

I have a sense of humor. My son has schizophrenia, another serious mental illness, and after years we can finally laugh together about parts of his past. But the key word is: together. We laugh with, not at. 

OCD is not "cute." It's not Monk wanting to keep his shoes in a row and the carpet clean.  Some are able to manage the symptoms, but many are not, and this illness prevents them from living a productive life. For those who struggle to manage this, or any other serious illness, it's not a laughing matter - unless you have earned the right to laugh with, not at, perhaps struggling with the illness yourself - and then only if the time is right.

No one needs a healthy person wearing a sweater that trivializes the condition of someone who is not.

I recently went through a year of physical therapy to regain the ability to walk, and laughter has helped...but not laughing AT. Only in the physical therapy room, or with my family and friends who have helped me through, was humor appropriate - and actually quite welcome. But if anyone were to make fun of me, or wear a shirt that said "I am crippled for Christmas: My credit card has limitations", I would be annoyed at the trivialization of my pain.

laughing at oneself is very different from laughing at someone else.

Mental illness is still a physical illness; it's in the brain. If you wouldn't make fun of cancer, Target, don't make fun of OCD, schizophrenia, PTSD, bipolar, or any other illness of the brain.

Pull those sweaters now.

Thank You, John Oliver. And I apologize.

Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds - with plenty of room for punchlines as well. I know - seems like something that isn't humorous. But this segment provides more respect for mental health issues than so many others I've seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

"It seems there is nothing like a mass shooting to suddenly spark political interest in mental health."

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on "judging" this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way)

So let's be reminded of the following facts, in Rolling Stone's coverage of the segment:

"The aftermath of a mass shooting might actually be the worst time to talk about mental health," he argues. "Because, for the record, the vast majority of mentally ill people are non-violent. And the vast majority of gun violence is committed by non-mentally ill people." The host cites a February 2015 report by the American Journal of Public Health, which states that "fewer than 5 percent of the 120,000 gun-related killings … were perpetrated by people diagnosed with mental illness."

Yes. Let's not stigmatize those with mental health issues every time a crime like this occurs. But also, yes. Let's pay attention to our broken system - and fix it. Segments like John's, factual as well as (weird but wonderfully true) entertaining, point the way.

Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.

As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".

Once again, the system closed its eyes to the need for support and left a family alone to cope.

Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues."  How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?

She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.

When will we ever learn?

When will we pay attention to warning signs?

When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?

We are one of those families.  For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life.  The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.

We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM.  There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.

But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately.  He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.

He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.

Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?

Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.

We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."

According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."

Or living with their frightened, hopeful, families. Attention must be paid.  

Sons with Schizophrenia: A Tale of Three Mothers

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

Love matters…but it’s not enough

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy.

Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “ 

Later, she struggled with whether or not to let Zac get his own apartment.  In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''

Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.

Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.

Young Holmes Family

Holmes Family Today

Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.

Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.

She writes:

(01-08-2013) I can never forgive myself for not knowing that this would happen.

How could I have known?...

Forgive yourself…And then forgive the people who hate your guts and want you dead.

(02-01-2013) I had a good kid who never harmed anyone.

That changed; his brain changed.

(03-22-2013)

A memory of when he was in high school…we are hiking up a hill

I can’t keep up.

Jim stays behind to make sure I am okay.

Isn’t that empathy?

Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura?  Three mothers – three sons with schizophrenia.

What made the difference?

Is it love? I highly doubt it. These boys were all loved.

Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.

Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.

“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs

Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?

I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:

Of course, the majority of my guys are imprisoned for killing their parents.

This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?

The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.

These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed.  And the rest…is out of our hands.

There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.

Three mothers.

Three stories.

Three outcomes.

Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.

When will we ever learn?

One Reader Speaks: Siblings, Schizophrenia, Support, Strength

Thanks for Reading and Sharing

Sometimes I open an e-mail from a reader that not only touches me, but teaches me...and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful - and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.

Dear Randye,
I am writing to thank you for your strong and beautiful book Ben Behind His Voices.  I did not want to read it.  I borrowed it from a friend almost two years ago and have been walking past it since then.  And I can’t exactly say it was light reading once I cracked it open.  Ben’s story is so much like my brother John’s.  But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective.  I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.

You do an especially fine job of explaining that tension between trying to help and trying to let be.  Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision.  As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?”  One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.

Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas.  One is courage.  A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been.  He said yes, that he had been out too.  He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came.  “It was hard,” he said, “but I did it.”  It was hard?  To sit on a bench for 30 minutes on a beautiful spring day?  It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building.  But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.

Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.

We talk on the phone a couple times a week.   He lives about 90 minutes from me.  Yesterday we spoke for about 20 minutes.  With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply.  It was one of those moments you talk about that should be cherished for the simple pleasure that it is.  Your book did that for me.

I am saying a prayer for Ben.

I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy - RK

NAMI Palm Beach Keynote - Support, Education, Acceptance

Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL - a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben's schizophrenia, but that he is willing to take consistently. Ten years.  Three of those have taken place after where our book, Ben Behind His Voices, leaves off - in what one reader calls "open-ended hope."  At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to "cheek" his meds. He hated taking them, didn't think he needed them, was discouraged by the side effects.

Rebuilding Your Life with Mental Illness: Delicate

Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work - teamwork that included Ben himself, and that's why it was effective.

What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that's what matters. He felt like - and was/is - a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben's adherence to his medication regime.

And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car.

The result of the stability of consistency with his treatment? Ben has continued to rebuild his future; in fact, he has far surpassed the modest hopes presented at the end of my book. Yes, despite the severity of his schizophrenia (many doctors told me that his case is "very severe"), Ben not only continues to attend community college, but now has held a job as a restaurant waiter for ten months! He is one of the best waiters there, the only one who has customers come in and request to sit in his section.

He, also miraculously, has started to have a social life. He has friends. And he is driving a used car that he saved very slowly for. It's not fancy, but it has added to the fact that he is now feeling like a man. Though he now lives with us, he has earned the position of no longer feeling embarrassed by his life. Sure, he has to be home twice a day for us to supervise his medication, but it's a small price for us all to pay, for the fact that he is feeling good about himself, realistically, for the first time in forever.

All it takes, as we know all too well from experience, is two days without his treatment and he will be back in the Emergency Room, waiting for a bed in the psych unit. (This has happened eight times before.  Trust us. Only two days to go from employable to certifiable).

We Need Foresight, not Band-Aids!

So - I offered to pay for those extra ingredients myself. $80 per month. Not so bad - for me. But what if Ben were alone, no family to support him, living on the meager disability payments that are supposed to cover room and board but do not? Do you think he could find $80 per month? Can others in that situation? No. So the result would be: not taking the medication. It's one step off a very steep cliff - and the fall is not pretty.

Unfortunately, my relief that $80 per month (challenging to find, but we'd manage) would solve our problem was short lived. The pharmacy called back to tell me that it is illegal to charge me for part of a medication. We have to pay for the whole medication - hundred of dollars per month. The only other choice? He has to take the pills, and Medicare will only cover one formulation of those: the ones that Ben finds impossible to swallow. We do NOT have hundreds of dollars available per month after bills are paid. Most families don't. But what choice do we have? This is NOT FAIR - to Ben, or to us.

Why did Medicare make this coverage change? To "cut corners", to "save a few bucks." But, in doing so, they are risking - no, endangering- my son's life.

How stupid and shortsighted can you get? While Ben is not violent by nature, others with untreated schizophrenia can be. Or their intentions are good, but the "voices" convince them that violent actions will lead to the good outcomes they desire.

How many shootings in movie theaters do we need to know that we need to provide treatment for mental illness? How many news stories of untreated schizophrenia (despite desperate families begging for hospital beds, enough days of help, enough support for staying in treatment and taking steps to recover one's life and dignity) does it take to get smart? To provide support for a chance at recovery?

Deeds: “The system failed my son”

When mental illness goes untreated, lives are endangered. The lives of those living with the illness (who wind up in jail, homeless, or dead), and the lives of those they could hurt in the attempt to obey their hallucinations. Aurora: untreated mental illness. The attack and suicide of Senator Creigh Deeds' son Gus: no beds available in psych units for the help they begged for. Virginia Tech shootings, the Unibomber's plans, the list goes on and on.

Treatment could have helped them. Treatment could have prevented tragedy. Saving pennies is not the answer. Provide treatment, structure, community, and purpose: the four pillars of recovery I will explore in my next book, Ben Beyond His Voices.

Meds alone do not change lives challenged by mental illness. But, for many, they sure do help provide the stability that is needed to rebuild futures. Take this away from my son - or even change the routine - and his carefully structured rebuilt life can come tumbling down faster than you can say "tax break."  Too many federal and state budgets are cutting mental health funding to make the numbers look better. And look at what happens every single time you try that ploy. Lives are lost, and much more money is spent on the tragic results of this lack of foresight.

Prevention is cheaper than tragedy. Medicare, Don't be stupid. Let my son, and others like him, have the treatment they deserve. Give him back the meds that work. Let him continue to be the taxpayer he has fought so hard to become.

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on "Mental Illness in the Family" on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself.

In the Name of Love. (mask created by Young Adult with Schizophrenia)

But with the treatment we “insist upon?” He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now — which is the parenting contract lasting a lot longer than we’d ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is “totally responsible” — which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben, no longer “behind” his voices all the time.

We applaud his independence, and hope he has a car and home of his own someday.  We’d like our lives back, too, believe me. But not at the expense of Ben’s life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we’d had high hopes.

So, dictator Mom makes sure he takes his meds and does his chores. We also provide rides to and from work when we can — which is most of the time (one of the reasons I often work from home). If we can’t, we trust him to figure it out.  We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader reviewer above, advocate for “patient’s rights” to refuse treatment. We advocate for Ben’s right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends -  and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.

It's his right.

How Families Slip to the End of the Rope: Mental Health System Cracks

As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?

Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category "How is Ben Doing Now?"), but here is the current picture, about which I am so grateful:

• Ben continues to take college courses, 6 credits at a time.

• He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)

• He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it.  He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.

• Although he had a roommate here for awhile, that ended badly (with the roommate's addiction and connected behaviors) - but Ben has managed to salvage the start of an actual social life now. One step at a time.

Help Us before we Get Here!

Still. All of this progress can go away in record time - and often has, in the past - if something interferes with the meds he takes.

Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a "neural difference." And we cannot do it alone.  So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.

1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.

2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.

3. Had to wait until Monday for further action. (No one works on weekends). Didn't think it would be an issue.

4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben's face and confirmed he had been there recently for bloodwork, this visit somehow was "not in their system". So we did the blood work again, just in case. Thank goodness we did.

5. Meanwhile, we are now dangerously low on Med A. If Ben doesn't have a full dose of it, he will exhibit a  serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.

6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn't been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben's, but that she is out to lunch. But I can leave a voice mail message.

7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.

8. I wait three hours. No call-back. So I call the main number again. "Oh, didn't they tell you? She's on vacation." No they did not.

9. I call the nurse again. He spends ten minutes telling me why he can't do anything to help me because the NEW paperwork (from this morning's blood test) is "Pending", and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere - and yet the one or two things I ask his "case management team" to help with - keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to "manage" his case?

10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day. 

…but not disaster, if we catch it in time!

Crisis averted. But - if not for an empathetic pharmacist - Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.

So - case managers - if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) - PLEASE, at the very least:

• Let us know if you are going on vacation, and who is covering our case

• Have the front desk be aware of days off and what else a family can do

• Notice if paperwork is late. Call the family, and your client.

• Hey - please don't wait for a crisis. Call your client once in a while and find out how they are or if they need anything.

We may seem like the "easy case"  because families do a lot of the work - but believe me, we need your support.

Do we have to be a squeaky wheel to get it?

Does there have to be a crisis to get some help? Some answers?

Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I'll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us - not just our family, but any others dealing with a family member with special needs: What would happen if we couldn't be here? What will happen when we are gone?

Families cannot do it alone.  The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don't let us slip through to the end of our ropes.

Thank you. 

Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.

Schizophrenia and Parenting: Step In or Let Go? (reposted from HealthyPlace)

I no longer blog regularly for HealthyPlace.com, but still respond to comments from the years I wrote for them. In checking in, I noticed that the post with the most hits, and still bringing in comments, is this one. I wrote it almost exactly three years ago, but it still hold true. The situation may change (currently, our choices have upgraded to things like "should be support Ben's getting his own car?", but the dilemma - step in, or let go? - is the same. Every parent - whether or not dealing with mental illness - knows.

Here is the post, originally written May 31, 2011. (by the way, since this post, the apartment did NOT work out. See updates for details...Ben now lives with us.)

See if it resonates for you.

--------------------------------

A message comes to me via social media, along with an invitation to connect. It simply says, "My 27 year old child has schizophrenia, but will not get treatment."  Oh boy, can I relate to that. Unfortunately, this is a major dilemma facing all of us who deal with mental illness in our families.

Parenting is always about the precarious balance between stepping in to help, and letting go to allow learning from experience. From a child's first steps to his or her first relationship, car,  job, apartment...when to give advice? When to help? When to step back and watch them sink or swim?

For the parents of a child without a physical or mental illness, this process is difficult enough; for those who are dealing with illness in our children, it's that much harder. The consequences of stepping aside, of letting go, could be disastrous: poverty, hospitalization, an arrest, flight, or even - tragically - suicide.

Schizophrenia and Freedom Can Be A Scary Combination

Back when a hug was all it took...

 My own son, Ben, 29, has just moved from seven years in a group home (24 hour staffing) to his own apartment. There is some support - a caseworker, medication supervision - but also a new lack of structure. No required group meetings. No chores scheduled. No one - except the roaches - to know if he washed the dishes or not.

Am I excited for him? Of course. Am I concerned? You bet I am. Is there much I can do? Only some things. He could crash, he could cheek his meds, he could oversleep and miss an appointment, he could become lonely and isolated. But if I call to see how he is, he sees right through me. "Mom, I'm fine. I'll get to work on time. Of course I' m taking my meds. I'm fine in the apartment all alone on my day off. Yes, I"ll unpack  soon."

So I let him live. Alone. And I watch from the wings, ready to alert his caseworkers if I see any warning signs. Three days ago I saw the unmistakable (to me) signs that Ben had missed a day of meds - so I sounded the alarm to all new staff members who donot know his tricks yet. And now he's okay again - so far.

Now I only see him on family occasions, or  on rainy days when he can't take his bike to work. Could he wind up in the hospital again if I am not there to witness symptoms? Yes, of course. And I hate that. But we have only so much control.

My Adult Son with Schizophrenia: We Hope for the Best

As always, we do what we can and then hope for the best. Keep an eye out for trouble, and our hearts in a place of faith in Ben and his ability to make the adjustments to this new life.  Scary? Oh yes. We do the best we can for our loved ones -secretly or openly - and then sometimes all that's left is to take care of ourselves and the rest of our family.

My mantra at these times? "Whatever happens, we will handle it somehow."

I don't always know how, but I know that we've managed before, and will again. And I ask for help when I need it.

Baby Steps Add Up!

thanks, Conn Jackson! a pleasure to return to your show

Mental Health Awareness Month, for Caregivers too

Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year...but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!

WSFA.com: News Weather and Sports for Montgomery, AL.

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience about our family experience with schizophrenia and recovery in my son Ben - and to have shared the stage (well, one at a time...) with the wonderful Pete Earley, author of Crazy: A Father's Search Through America's Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.So, for newbies to this site, here is a "nutshell" version of our path so far. I wrote this to send to NAMI, for possible media interest.

So - the "movie trailer" version of where we've been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well - but it has been a long road, and we almost lost him several times - so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves - to make sure things continue to go as smoothly as possible.

 Our story? In a nutshell: 

• Bright, promising childhood - Ben was (is) bright, personable, loving

• Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho

• Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system

• A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough

• Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery

• At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance

• Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well".  Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.

• Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially

Family-to-Family

!