Yesterday, Monday morning, was a good morning; I was comfortable and at rest. Then a nurse told me that I was being discharged today, Tuesday. You don’t want to hear that from a nurse. You want to hear that from your doctor so you can discuss it with him. So I asked when I would see the discharge planner and the nurse replied, ‘Tuesday.’ The plan the physician assistant and I had was to discharge me to St. Camillus Rehab Center for short-term rehab. Transfer to an institution cannot be accomplished in three hours; it takes twenty-four hours, and the discharge planner was not going to see me.
Then the nurse came back with a two-page form, “AN IMPORTANT MESSAGE FROM MEDICARE ABOUT YOUR RIGHTS,” which I signed on the first page and initialed on the second page. In a few minutes the nurse was back, telling me I had to initial it three inches above where I had. I refused to do so. St. Joe’s cares more about the paperwork than about discussing with me where I am going to be discharged to. Screw you, St. Joe’s; you set the priorities and the nurse carries them out.
Then the doctor came and I told him I hadn’t seen the discharge planner. He went and got her. Her name is Kim Bookman. She said I was being discharged to home or a long-term care facility. Long-term care is not covered by Medicare, only Medicaid. Medicaid skilled nursing homes are so bad that you would only put your worst enemy there. And they are institutions that require at least twenty-four hours advance planning. What the discharge planner meant was that I was being sent home. According to her, it was appropriate to discharge me home because I was able to stand up and shuffle 140 feet.
I objected. The ability to shuffle a short distance (my apartment is 540 square feet) does not equate to the ability to live alone. The discharge planner didn’t care and wouldn’t listen. She left and I called the physical therapy manager; Steve, who holds my health care proxy; and my best friend Dick, who is six hundred miles away. Dick is a medical social worker/care planner. He wanted to punch out the bitch Bookman.
Kim Bookman came back. Our conversation did not go well and I was getting upset, so I referred her to Steve. Steve is better at handling people than I am. Bookman asked one last question: “Did I have a preference in home health agencies?” That moved me from being upset to being really pissed off. I have been and am currently receiving home health care. The bitch Bookman did not even know that. She had not checked the chart or asked me. She did not know that I have been receiving aide service for twelve years.
Instead of getting in a fight with her, I again told her to talk to Steve. The bitch Bookman snapped at me and said, “When you’re ready to be reasonable, call me!” She is calling my fear and distress “unreasonable”; she is equating my upsetness with bad behavior. Proper discharge planning begins with interviewing the patient. Instead, she has treated me with all the humanity of a carton of canned tomatoes.
All by her little old self, the bitch Bookman sent my day down the crapper. What followed were many and multiple stressful conversations with about eight people as we tried to figure out what to do. The most useful conversation was with the physical therapy manager who told me that she was going to stand behind her staff person’s observations about my ability to walk, but maybe what I needed was an occupational therapy (OT) evaluation. I had no idea what an OT person does. Dick said that PT is large muscles and OT is small muscles.
Exhausted and distraught, I settled down to nap and instead began to cry. That’s when Dean Northrup, the OT guy, arrived. What I wanted to do was yell at him—blame the guy on the spot for the bitch Bookman, St. Joe’s attitude, and Medicare’s regulations. What he probably wanted was for me to be cooperative and ready to work with him. We sparred. I wanted to throw him out, but knew he was my only remaining hope. He threatened to walk out, but finally we agreed that he would sit down and ask me questions and I would try to answer them.
I told him how I used to be able to wheel five miles across the county to take care of business, but that by the time I moved into the university two years ago, I was down to a one-mile radius. This year, at best, I can travel six or eight blocks. Last year, I used to go up to the Thornden Park rose garden and deadhead roses every other day. Now, I can barely get there once every week or two.
I told him about getting out of bed in the morning, washing my face and brushing my hair, and then having to sit down to rest before I can start the coffee. I told him that I got a shower chair years ago, but my aide has had to do my showers for a year. I sit; I can’t bathe.
The OT guy asked how I get my groceries and I started to cry. My aide and I used to take Call-a-Bus to the grocery store and the Regional Market alternating weeks. In recent weeks, I haven’t been able to go so I’ve been living off what’s stored in the freezer and cupboards. My aide doesn’t have a car and isn’t allowed to use Call-a-Bus by herself. Dean the OT guy suggests my aide can take the Centro line bus. I explain that Onondaga County Long Term Resource Center will not authorize aide time for taking a bus, and the nearest grocery store is miles away.
Dean the OT guy and I talk for about an hour. I tell him about my family living three hundred miles away and not caring to help me. I tell him about being alone twenty-two hours a day. He asks if I can dress myself; I tell him I’m too tired to get out of bed anymore. I tell him about federal policy (HUD) that puts me in a warehouse: 176 people living alone together in tiny one-room apartments. Most tenants spend most of their time gossiping and complaining. People like me who don’t want to do that have to stay inside our apartments to avoid it. There are no babies, teenagers or young adults. We do not celebrate births, graduations or marriages; all we have are funerals.
So Dean the OT guy does the evaluation that the discharge planner should have done. I ask him what he’s going to put in the chart. He gives me the usual gobbledly-gook medical answer, then says simply, “You need help.” He adds, “I am afraid of what you might do if you went home alone.” Dean the OT guy is an empathetic fellow. So then we go on to talk about our shared faith in the Lord. He and I are working on God’s plan.
What scares me is that people like Kim Bookman are not, and they have mortal authority to hurt me.