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 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:
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.
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.