I’ll never forget, after Jesse got his initial diagnosis of schizophrenoform disorder, he was sent to a special school. He was sixteen. When we were asked to meet with a social worker, we thought it would be more of the same as we had been trying to understand what was going on with him.
The social worker asked us to detail the problems we had with each other. Jesse and I looked at each other and he said, ”I don't have any problems with my mother.” I agreed, saying we had no problems with each other except those that the illness caused. I am not saying that if he didn’t have schizophrenia we wouldn’t have had problems. It's just that any psychological problems we might have had if he was not ill just paled before the illness.
The social worker posted in the notes — which I saw after his death — that Jesse and I were both in denial. Not so. We were so close. He appreciated so much that I always reached out through his illness to reassure him. He felt I understood him. We both knew we were up against something huge.
During his lifetime we really made progress. He was better at 24 and getting a handle on things. If we could have made it till he was in his late twenties I could have brought him home. But no. They told me I was trying to hold him back after he went through a two month training and I said it was too soon to put him out in a board and care facility. He was too ill, I felt, though I had no idea how completely unsupervised he would be.
My experience is that Telecare calls houses “board and care” when they offer no food. (The dictionary definition of “board” is food.) Because of a Telecare mistake about Jesse’s SSI check, they didn’t take money out of his check for feeding him. They neither fed him nor gave him money to purchase food, and he wasn’t able to access free meals at the food kitchen blocks away. He was too disorganized to get there.
Telecare got lazy the week after Christmas and failed to give him his meds. They were supposedly training him to take his meds on his own and they didn’t check on him for five days.
The day before he was killed, the other patients in the house told Telecare he needed to be 5150’d. The staff ignored this warning and, when they discovered their mistake, a LVN tried to correct Jesse's decompensation by giving him an anti-depressant — a drug I’d told his doctor was not ok to give him. I’m a psych tech so I knew this, but he was conserved so I had no say.
From an unsupervised kitchen, Jesse picked up a sharp knife because he’d become afraid. I didn't know at that time that Telecare’s crisis intervention team had been unfunded. Why would they tell me? They called the cops saying he was chasing a patient with a knife which the patient testified Jesse wasn't doing. The cops came and gunned him down after calling him out of the bedroom where he was sequestered. They killed him less than two minutes after they got there.
I didn't live close enough and wasn't notified until too late. Watch your kids parents even if they are conserved. Don't ever imagine that a for-profit system will truly care for them. Trying to claim your personal problems are psychologically based is only one way the system marginalizes parents, especially when your children, adult or otherwise, are profoundly ill.
Blessings on all who are dealing with this illness and the system that's first motive is profit. I keep you all in my heart!
