I bring you greetings from Crouse Hospital’s Emergency Department’s Clinical Decision Unit. I am back in the safety of Crouse Care, and how did that happen?
Well, the story begins Thursday, June 27, when I was discharged from Crouse Hospital and admitted to Iroquois Nursing Home, where more than one staff member told me that the attending physician, Dr. Richard Lockwood, would see my Friday morning for a medical assessment.
Actually, Dr. Lockwood came with a nurse manager (?) Krista (?) on Thursday and said that he’d have me out in no time. This came as a considerable surprise to me since I was not there for rehab. I said, “I’m here for palliative care.” The doctor looked at the nurse, she nodded agreement, and he said that he hadn’t read my hospital discharge summary, then he walked out of the room with the nurse following.
This was not a medical assessment; this was a 90-second meet-and-greet that could have been performed equally well by a maintenance man—he, too, would not have read my discharge summary—so I expected Dr. Lockwood to return Friday morning for the official medical assessment.
He didn’t come.
Then the nursing women advised me that Dr. Lockwood did not come to the home on weekends, so I expected to see him on Monday morning.
So I started requesting to see him. I asked all kinds of aides and nurses, not yet having figured out who was who or who did what.
On Tuesday Dr. Lockwood again did not see me and I, again, placed lots of requests.
By Wednesday, I had gotten enough feedback to understand that Lockwood came to the Iroquois early in the morning. But he didn’t come to see me again on Wednesday. By noon, I had given up; it was the day before the Fourth of July and I didn’t expect to see him Thursday, Friday, Saturday or Sunday.
But by Wednesday afternoon I had concluded that the clonidine I was taking wasn’t doing any good in easing my mood. What I needed was a conversation with Lockwood about what medications had been tried, how I had reacted, the peculiarities of my compromised immune system, and what he might prescribe for my relief.
It didn’t happen.
By Wednesday evening I was really hurting. The nursing staff provided no relief or solutions, so there were lots of phone calls between me, Stevie the Wonder POA, Physician Assistant Liza, my ex-psychiatrist Dr. Ghaly, a nurse manager—possibly Krista (?) again—and God knows who else, possibly Lockwood.
The end result was that, at Dr. Ghaly’s recommendation, the clonidine was increased and two blue pills—a B-vitamin?—were added.
Lockwood continued to not see me.
On Friday, July 5, I went out to lunch with friends. It was a very pleasant time, however, it also was the first time in about two months that I’d been more than three blocks away from my bed. It was very hot, I walked a little, and generally was subjected to a lot of stimuli that I had not recently experienced.
Consequently, on Saturday morning I was in total turmoil and torment. That’s just the way the immune system works: it doesn’t send distress messages at the time it is being perturbed; it waits till the next day. I was irritable, distressed, agitated and generally having a total emotional meltdown. And all the staff members attending me that morning were people who had never seen me before. I, personally, think it is lousy scheduling to have a whole new staff on the weekends. If any of the staff who had worked with me during the week had been on, they would have said, “Hey! That’s not the way she normally acts. Something is seriously wrong here and we need to figure it out.”
No such person was working that morning so instead of appropriate care I got a lecture from Andrew (?), a nurse, on bad behavior, which only made matters worse. It was not bad behavior; it was an emotional meltdown resulting from a dysfunctional immune system and chronic hyperglycemia, and Lockwood had not presented himself to have any discussion with me about an appropriate medical response.
I was in torment, screaming, and begging for medication, none of which had been ordered. As the morning progressed, the staff became increasingly slow to answer my call bell. I was reduced to lying in bed yelling, “Help me! Help me! Somebody please help me!” Welcome to life in a nursing home.
In the hospital, I had taken 0.25 mg of Xanax. Xanax is a benzodiazepine, which is contraindicated in the presence of respiratory disorders. I have sleep apnea and pulmonary fibrosis. I stopped taking the Xanax because it left me so short of breath that I couldn’t carry on a conversation but, on Saturday morning, I was in such desperate straits that I would have taken anything, no matter how dangerous.
Finally, I called Steve, who called somebody, which resulted in me being given Xanax. I slept for an hour and a half, then woke up and could not move. I lay there, fully conscious but unable to move, for another hour and a half. Later, I found out that I had been given 0.50 mg and it was ordered by the on-call physician, who also had never seen me and whose name I still don’t know.
On Sunday, July 7, I was again demanding to see Lockwood. The evening nurse manager told me Lockwood would see me Monday morning.
He did not, although I did see him walk down the hall and back past my room.
Later Monday morning I pulled out the Iroquois handbook, which is more than forty pages, and found the place that lists phone numbers for people to call for help, so I called the NYS Long-Term Ombudsman, and the NYS Dept. of Health nursing home hotline. The Iroquois had given me the book that said that’s what I should do if they weren’t doing what they should.