I wake in the pre-dawn darkness. It is spring. The windows are open and the birdsong is heard. I dread this day, as I now dread all days.
In the hospital I was on total bed rest. Staff emptied my catheter bag, helped me to the bathroom, did my finger-sticks, brought me water. Some of the staff were nice; the mean ones were memorable. Staff put me in a big blue vinyl-covered recliner, wheeled me into the shower and scrubbed me down. Alternately, they refused to do anything and I went dirty.
I qualified for a skilled nursing facility, not because I need skilled nursing care but because I need total care.
Each day, in the hospital, I could see myself getting stronger, able to do a little more—and when I say “a little more” I mean wash my face and brush my teeth. By the time I got home, after two weeks of total bed rest, my troubled nervous/immune/endocrine systems were so rested that I was at peace. I was calm.
I became increasingly “appropriate” as my time wore on in 3-6. If the staff noticed at all—which is unlikely since they already had me labeled—then surely they attributed it to their righteousness. In fact, it was the result of bed rest. I am, you see, tired at the very core of me; tired to death.
Now I am home. I have to get my own water, empty my own catheter bag, get my own lunch, train a new aide, make grocery lists—I have to think. Thinking is very tiring. My glucose averages 315.
When I came home, my soul was at peace because, despite the meanness of many of the 3-6 staff, my body rested. Now I must think and do at a level that is too high. Consequently, I cry peace, peace, but there is no peace.
Something I learned a long time ago after I stopped taking medications and began to listen to my body. A healthy body wants to get up. You sleep, you wake, you lie there a bit, and then you find yourself with your feet on the floor, searching for your slippers. The healthy body gets up automatically, spontaneously. If you have to force yourself to get out of bed in the morning, you’re not getting enough sleep. Healthy people don’t mind getting up.
I am so unhealthy. Here’s my dream world: to have me in my bed pushed out on a patio, to lie in the sun and feel the breeze. To listen to birdsong. That would be heaven to me. Speaking of heaven, the Holy Koran always refers to the next life as a garden; they are going back to Paradise before the fall of Adam and Eve. Pretty cool, huh?
So what does that make 3-6, sealed alone in a sterile room? I could see the sky—no sunrises or sunsets because my window faced south—but that was all there was of nature. Melia brought me three free-range daffodils, which staff put in a male urinal.
My life is horrible here, now, because 3-6 failed to do discharge planning. The Patient Bill of Rights says that the patient and the patient’s representative have the right to be included in all treatment and discharge planning. We were not included in anything, ever. Fifteen doctors, directors and vice presidents had a meeting. We asked to attend and were denied.
Steve inadvertently walked into the room and thought it was a staff meeting. Dr. Tucker said, “No, it was an Anne Woodlen meeting.” In it, they discussed my discharge. If this wasn’t a treatment or discharge planning meeting, then what was it? A financial planning meeting? Maybe it was a how-are-we-going-to-cover-our-collective-ass-from-the-woman-who-knows-how-to-file-complaints meeting.
They had a meeting about me without me. I was not allowed to add to the collective knowledge from the patient’s point of view, make suggestions drawn from the world outside medicine, amplify what limited information they had, or clarify any errors in what they believed to be true.
Fifteen doctors, directors and vice presidents met, confident that they knew everything and certain that the patient had nothing useful to contribute to her treatment or discharge planning.
Then I was discharged with a virtually blank, unsigned “discharge plan.”
Amy gave me instructions on “Foley Catheter Care At Home.” Given the fact that I’ve had the catheter for nearly two years, the instructions were to cover their ass, not educate mine.
The “Support available after you are Discharged” was a printed list of psychiatric resources. By the declaration of the head psychiatrist, I did not need psychiatric care. The section on “My own personal supports” was left blank. Unit 3-6 did not know, care, or ask if I had any “family, friends, case manager, therapist, physician, religious/spiritual provider, Day Treatment provider, support groups, etc.”
So here I am, trying to be my own case manager, with a blood sugar of 315. Trust me, it’s not do-able.
Amy gave me the “Discharge Instructions/Plan Medication Reconciliation Form.” It says “NO MEDS” and is signed by Levine. Wow, that’s a big help.