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 for
tomorrow 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.
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.”
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.