“I can’t live here, Grandma. Thousands of spiders come out of the vent in the bathroom.” Just another day with a challenge for me.

I’d tried to put AJ into an apartment nearby to see how he’d handle being a bit on his own. Still, there was the need to go clean and feed him as these were not things he would do for himself. 

AJ had a childhood history of being “different”. There were many diagnoses from a very early age — ADHD (Attention Deficit Hyperactivity Disorder), OCD (Obsessive Compulsive Disorder), ODD (Oppositional Defiant Disorder) and 15 other labels. AJ attended a special-needs school which was the only option at the time and a long commute. A school that held juvenile delinquents, and anyone who made the public school teaching difficult, was no solution for someone who spent most of the time in a fetal position under his desk or in the padded room that increased his anxiety.

At 17, AJ entered a private institution because it was believed it could help him. The trauma he experienced at the hands of staff specialists was brutal and pushed what may have been moderate schizophrenia into extreme illness. He suffered forced medications and blood work while being tied down, a shaved head, straight-jackets, and no visitations — things you would see in old horror movies. 

When he was 18, a social worker asked me if I would take AJ. She told me to grieve my grandson’s death as the person I once knew was gone forever. After many classes on what to expect, AJ came to live with me in my belief that love could make this better. Of course, I’d take him. It was a privilege — I’d loved him before he was even a twinkle in his young mother’s eye.

There was a short honeymoon period when behavior wasn’t frightening but, as time went on, it became clear AJ’s mind was more tortured than I ever thought possible. In the first years he lived with me I tried to teach him to cook — he was afraid to even stand by the stove. He refused to shower or change clothes. He wrapped his legs with chains. He rarely spoke. There were many different personalities to deal with. Hopes for a normal life dwindled. While I was driving him one day and had to stop at a light, he insisted I proceed as there was no car crossing our path. That was the day I realized he should never be encouraged to drive. And when demons came and went uncontrollably, there’d be damage to property, thoughts of death, and letters of dying and darkness.

As I grew older, I needed to know if AJ could live on his own with some help. That’s where the apartment idea came in. And by the time I moved him to one, I’d found ways to handle the monsters in the walls and the spiders in the vents. After all, why couldn’t there be a special spray that would kill monsters and spiders forever?

I couldn’t find solutions for everything, though, and eventually AJ returned to live with me. The days were never normal. A few minutes at a time were okay but I couldn’t leave him alone for more than an hour or two. I lived through painful moments trying to decide if it was time for a 5150 (72-hour involuntary hold) knowing that he would be triaged out as he answered the all-important question: “Are you a danger to yourself or others?”  Everyone in the triage area knew how to answer that. There were a few times when a 5150 held and became a 5250 or longer stay but medications always included terrible side-effects. 

For AJ, days and nights exist when his tortured mind begs for someone to end his misery. He spends hours telling me he doesn’t want to be a burden even though I try to reassure him I’ll always be there for him. And sometimes he warns me to leave the house until his violent thoughts can calm down. 

For me, I fill many nights with tears knowing about my grandson’s tormented brain. And there’s pain, much pain from family and friends who advise, “Put him in an institution or make him homeless.” For years, I’ve tried to educate these people that there are no institutions for him; no homes that can house his extreme condition. Now, I ask them to give me a phone number to call knowing there is no phone number to call. I watch the expressions on their faces because this is not the reaction they were expecting. They were expecting me to agree and say, “Yes, I’ll put him in an institution.” There are no appropriate facilities and I know they won’t try to help me find one.

Until you experience the disease, until it affects you and you’ve come to grips with the lack of care and resources available, until you’re scared enough to do the research, you’re ignorant of the situation. I wonder why others don’t thank caregivers for keeping the rest of the family, neighbors, and world safe by watching over and caring for these extremely ill people?  

This is my beloved grandson. My heart embraces him. I’m committed to be there for him as long as I’m able to care for him. And I fear for his future when that day ends.