It has been a week and I cannot get a shower in the hospital. I have been asking repeatedly every day for three days. I smell. They say they will change the sheets after I get a shower but I never get the shower so I don’t get the clean sheets. If I stop asking, the nursing staff will never initiate care.
The shower has been dark for more than the month that I’ve been here. My repeated requests for a new light bulb go unheeded.
The nursing staff, too lazy to make two trips to the bathroom to empty my catheter bag, drips it and spills urine on the floor. They don’t clean it up because they don’t do floors. Dust and dirt collect in the wet urine until black smears appear. Housekeeping doesn’t mop under the bag because they don’t move medical equipment.
My call bells randomly are answered, delayed in being answered, or not answered at all at the convenience of the nursing staff. The nurse manager says that is not true. I have collected no data that enables me to dispute her.
The nurse manager and director of Patient and Guest Relations agree that my complaints should be routed through Patient and Guest Relations because nobody is following up on issues. The director takes two problems to work on and tells me someone from her department will come every day. The next day someone I’ve never seen before—who impresses me with her incompetence—comes, not to report on the outcome of the previous two problems but to ask me about what she—not I—considers a new one. On the third day, no one comes.
Some days I get a large dose of pain medicine and some days I get only a drop. All nurses claim they are administering the correct dose. The mode of administration changes from shift to shift. Again, I have to direct them. I am tired. Too sick. Too sick and tired to teach them their jobs.
I leave three messages for the director of Quality Control. He does not reply to any of them.
The cheerful vice president repeatedly emails that he will come to visit me. He does not.
My wheelchair is broken. A social worker tells me they are coming to fix it but goes on leave without figuring out who will pay for the repair.
The repair company says they are not coming because no financial arrangements have been made. Medicare and Medicaid will not pay for it because they are paying for my hospitalization. No, I say, I’m on Alternate Level of Care and they are not paying. Oh well, Catch 22, says the repair company owner. I cannot walk.
When I ask for the contact information for Medicaid, she says she is not allowed to give it to me. When I ask for a denial notice so I can appeal it, she says there is no denial notice, only her saying no. When I say that I am a citizen and this is taxpayer business and I have a right to appeal, she does not answer me.
I call the state senator and leave messages three times. There are no return calls.
The county nursing home refuses to consider me for placement, saying “She’s the one who files complaints with DOH [Dept. of Health] and writes a blog, isn’t she?”
When I email a civil rights attorney at the U.S. Dept. of Justice about my right to speak freely without retribution, I get a pro forma email that he can’t reply because the government is shut down.
I am alone in a small isolation room from which I cannot see any people in the hallway. The window’s view is entirely filled with the brick wall of an office building. For three weeks I have been asking to be moved to another room. The nurse manager babbles gobbledygook and doesn’t move me. The director of Patient and Guest Relations doesn’t follow up.
New nursing assistants show up every day. Each day I have to re-train staff on the specifics of my individual care. Outgoing nurses don’t report to incoming nurses details of nursing assistant information. A month has elapsed and the hospital has not figured out how to care for me. I have to repeat it to strangers every day.
Catheter care by the nursing staff is essential for not getting an infection. Most staff do it superficially instead of the proper way. To whom shall I report that? The nurse manager who doesn’t give a straight answer to anything? The Patient and Guest Relations staff who don’t come? The Quality Control director who doesn’t answer?
The shift staff may or may not sign in as they are supposed to. Who are my care-givers? Whom shall I ask for?
• The Iroquois Nursing Home continues to try to put me in psychiatric care; Crouse Hospital has applied to two medical care programs—one DOH, the other Medicaid—but neither has responded.
• A nursing assistant has transferred out because of the poor management on this floor.
• I have no family, few visitors.
• Each day the nursing assistants bring a new pile of linens; each day that stacks accumulate on the chairs. My bedroom is turned into a storage room for linens that all will have to be sent back to the laundry.
• I no longer can lift my laptop; half the time meal trays are set down backwards on my tray table.
• A nursing assistant puts my socks out of reach so that I have to step barefoot into the dried urine and dirt.
• Nursing staff expect me to know how they do rounds and how long breaks are but I have never been told.
• When there is a breakdown in nursing staff performance, they try to change the patient.
• Weeks have passed and I still don’t know if I’m supposed to be getting finger-sticks and vital signs each day. They do them if I ask; not if I don’t. The nurse manager says she will check, then berates me for not asking the doctor.
• The social worker said she would follow up on the wheelchair repair, but didn’t. Nobody follows up on anything.
• I repeatedly ask for a chiropractic adjustment; various people say they will check on it; nobody follows up.
• I cannot figure out how—or if—my massage therapist can treat me in hospital. Nobody else will address the question. Patient and Guest Relations does not come back.
• I call for supper at 4:46 and am told to expect it in 30 minutes. When I call back at 5:50 I am told that it left the kitchen at 5:21.
The psychologist, being one of the few people I still trust, comes but when I ask him for a hug, he refuses, saying it ‘would be [psychologically] dangerous for me.’ He is smart, rich enough to live on the lake, powerful enough to be co-owner of a practice with hundreds of employees. And he denies me the simple comfort of human contact.
I have been alone in a cell for a month. I neither can change it nor leave it. I cannot keep the cell or my body clean. I am tended by random strangers who behave in random ways, which I neither can control nor understand. I cannot count on being fed. I speak and no one responds. I rarely have visitors, except of the clinical kind. My skills as an activist are useless because the government has shutdown.
All is chaos. I have no control, and speech is pointless. When I do the only rational thing—give up, turn my face to the wall and stop speaking—they will call the psychologist who says the animal in the cage is not to be touched.