So I needed to be placed in a skilled nursing facility but all twenty-eight in Onondaga County turned me down. How could that be?
Maybe we should talk to St. Joseph’s Hospital, which wrote and sent the case report to the nursing homes. And they wrote and sent it without any oversight by me or my representative, who were both supposed to be involved in the discharge planning process. You think I could have written a case report that would have gotten me admitted to a nursing home? You bet I could have. They would have been fighting each other to get me.
Let it also be noted that nowhere has St. Joseph’s put into the record the very significant fact that I am suffering from lithium poisoning. The poisoning was accomplished by Dr. Jenifer Rich, director of St. Joe’s inpatient psychiatry prior to Roger Levine. What reason might St. Joe’s have for omitting the diagnosis of lithium poisoning from the information they send out about me?
So, I was sent home with a virtually blank discharge plan, then what happened?
Well, the first couple of days were really nice. Back in my own electric bed! Eating my own food! Admiring my own houseplants! Watching my own television shows. Life was pretty good. Of course, my blood sugar kept rising; two-week average now is 370, and that makes me very tired. I needed to think, to plan, but high blood sugar also mucks up the brain. I became easily confused and frustrated.
I—who had been on total care in the hospital—was discharged home with one aide who only worked three mornings a week (nine hours). And has attention deficit disorder, which she didn’t tell me about in the interview. She doesn’t manage it well, and I manage it even less well.
So we got the county in here the day after I got home and, sooner or later, more or less, they authorized twenty-eight hours a week for aides. Well, that’s all fine and dandy, but finding aides to fill the hours is another ball of wax. Steve, my close friend and as good a son as any woman could hope for, hired another aide who has turned out to be a peach—except that she has dyslexia and can’t read a recipe.
So now we have me, with executive dysfunction learning disability and confusion from high blood sugar, one aide with dyslexia, and a second with attention deficit disorder. Does anybody think this is going to work out well? Who is going to be in charge? Who is going to make decisions?
Uh-h-h, Stevie. Problem is, Stevie has no experience with being old, next to none with being disabled, and absolutely none with being poor. Try to imagine playing Monopoly without money. Instead of buying and selling, you have to figure who are the system players to whom you have to say please and thank you. And I am notoriously poor at the please-and-thank-you thing, consequent to having been poor since 1991. Trust me, the way America treats its poor folks does not warrant a please or thank you.
So Stevie and I are trying to work our way through the system. One of Steve’s greatest gifts is that he knows who and what he is. So do Dr. Edwards, Amelia, Olivia and very few others. It’s called “being a grown-up” and they are few and far between. Being a grown-up means that you can look at me and say, “Sheesh, Annie’s sick. What can I do to help her?”
Not being a grown-up means that when I snap and say something snarky, then you get your panties in a twist, take it personally, blame me for hurting you, get mad and walk away. Folks, my brain is failing: deal with it. Stop blaming me for bad behavior! Blame the sickness.
So we are trying—really hard—to figure out when and how to channel everything through Steve, and what and when I can deal with things. The way it should happen—the way it did happen in my grandmother’s world—was that three generations would live together and when grandma got upset then someone younger, who lived in, would screen the calls and handle the tough stuff. Nobody lives in with me.
So I get a line on the NYS Dept. of Health “Nursing Home Transition and Diversion” program. Wow! Does that sound perfect??? It’s designed to put everything a nursing home would provide directly into the patient’s home. Great! Terrific! We’re on our way, right?
Wrong. The program is run through Arise independent living center. First, they try to tell us I don’t qualify because it’s for people with traumatic brain injury. Wrong. It is also for people over sixty-five who are just plain wrecked. Then they tell us that skilled nursing won’t come to the home. Bullshit. Nurses always make home visits. And it goes on and on, just trying to get a home visit from these people at Arise.
We filed the application on Friday, May 3. The state regulations say there will be a home visit within two weeks. Arise scheduled it for June 4, a month distant. Under duress, they backed it up: late next week they will come.
Let me tell you about this week. In a hospital or nursing home, the staff take the responsibility for draining catheter bags as needed. At home, me being too sick and tired to get up and empty it, the bag ruptured and there was urine all over the place. And it was 10:00 p.m. and no aide would arrive for eleven hours.
My aide changed the tubing on my breathing machine. She’d never done it before. She did it wrong but I was too sick and tired to check her work. Sometime after midnight, I woke up with the machine not working. And the company that supplied it wasn’t answering their phone. I slept not at all the rest of the night.
By the time the aide arrived, I was gone. I could hear her, but was completely unresponsive to her tapping my hand and calling me. I was way, way down some long dark tunnel that seemed to stretch into northern Canada—way too far away to make it back when the aide tried to rouse me. You know the difference between “sleeping” and “unconscious?” Sleeping means you can be awakened.
The aide stayed three hours, made coffee, failed to rouse me, and checked out without telling anyone. Didn’t call Stevie, the agency, 911—nothing. Just walked away and left me alone and unresponsive. And she didn’t turn off the coffee either.