Earlier this week I posted a call for caretakers of the mentally ill–usually parents, siblings and offspring–to throw off their habitual cloak of invisibility and silence, and launch a crusade against public cluelessness and apathy; in particular, public policymakers. The link below, focusing on my home state of Vermont, shows just one example of legislative inertia: the ongoing crisis of too few beds for too many patients in psychotic states:
And here is one searing response to my call for speaking out:
“I wonder what I would do if Tom should decide he can no longer bear this burden. If I should find him gone one morning. Would I lay down beside him, hug his lifeless body in my arms, and go to meet him? Or would I give my life to him? Tom’s voices threaten to kill him and his family. From his letters for help, which are heartbreaking, he says “they are certainly adding other types of frequencies that are causing extreme agitation, sometimes depression, anxiety, stress; voices described as scary or haunting or terrorizing; more death threats against me and my family and they won’t quit. I have driven as far as the coast and cannot get this off of me. The police just come and put me in the hospital. I don’t know how to be more clear to them and they aren’t listening at all”. What if, in the dark of night, in his madness, he did not see the mother he loves but a horrifying delusional apparition there to harm him and his family; perhaps the act of killing me would finally get him the help he needs, a chance to quiet the voices and terrifying paranoia, and find some peace.
“I have only been afraid of Tom once, his delusions of people coming to harm him, and me not understanding. I never know the right thing to do or say. His brain is screaming at him, voices only he can hear, shouting down any shred of reason that may be left. His despair and fear so great I am afraid he will lash out at anything, anybody nearby, not knowing what he is doing in his insanity. Any suggestions of getting help are met with incredulous sighs and anger. Why don’t I listen, why don’t I understand, I am the one that needs a doctor, I am the one that is in denial. I hide the knives that night.
“We leave Tom alone now. He doesn’t talk anyways, he doesn’t hear us, or if he does he responds with something unrelated and unintelligible. I buy health food and leave it around, hoping he will get some nutrition in him He isolates in his room, sometimes for weeks at a time, not bathing, sitting so long his feet and legs swell up so bad he can barely walk, drinking coffee. He is going mad in the room I had remodeled for him, to keep him safe for as long as I could. I pray he will go into a coma and I can now call and say come get him and help him, he is a danger to himself.
“I go to do the dishes, but they are already done. I don’t remember doing them. I lose track of time, I wait. The wolf at the door will surely come bursting thru any day now; it is almost six months of no meds. One afternoon Tom comes to me, puts his arms around me and says ‘I love you mom.’ I’m still a light in his mind, I’m still there.
“The months go by. I ask myself how much worse can it get, but I already know, much worse. My nightmares turn into terrifying faces coming out of the dark.”