Wednesday, February 15, 2012 — The days and months flash by like lighted windows on an express train at night. But when you’re waiting of an afternoon for someone to come and you don’t know what time they will arrive, you huddle with the minutes and hours as passengers on a platform next to an empty track.
Such was my case Monday waiting for Tess, our Hospice nurse, to arrive. She said she would be here sometime in the afternoon from about one o’clock on. I kept looking out the windows, listening for the doorbell, or the phone; I folded the laundry on the bed in the front bedroom, the one that used to be Emma’s, so I could see her car arrive on the street below. But no doorbell rang, no phone. I waited and watched four and a half hours. No one came.
The trouble with my being strung along is that I don’t know I am until it’s too late. While waiting on the long, broad platform of afternoon watching for the nurse to arrive, I lost four hours of travel time, the expenditure for my ticket to my financial security at the end of the line. My Silk Road journey to riches could be cut off at any moment, lost in the dust of Emma’s lurching departure and my subsequent itinerary of obligations pursuant to settling our affairs.
Tess had stopped by last Thursday and placed a dressing on Emma’s bedsore, the day before the gel mattress arrived. The dressing, on Emma’s coccyx area, is designed to stay on for five or so days. When Daphne, our aide, opened Emma’s diaper Monday evening at 6:30, we saw that the dressing had fallen off. Since the wound is inside Emma’s diaper area, Daphne and I feared infection onset. This would not have happened had Tess arrived as scheduled to change the dressing. Dr. Patel had told me that as Emma’s immune system shuts down, she could succumb to infection. Daphne cleaned the wound and affixed a fresh large square bandage to it, because we didn’t have on hand the padded, healing dressing that Tess had used.
Since it was after regular business hours, I had to call the Hospice answering service for an on-call nurse. I told them specifically that I wanted a nurse to come and replace the dressing. The nurse from the Islands, the one who is on perpetual vacation, came in an hour and a half, arriving at 8:30. She hovered over Emma with her broad back to me.
“What are you doing?” I asked.
“Changing the bandage,” she said.
“But, what specifically are you doing?”
“Changing the bandage.”
“What is the process? What kind of bandage?” Tess had explained the type of dressing she used, its purpose and effects, how to care for it while it was in place.
“God be with you,” said the Islands nurse.
“What type of dressing is it? What are the steps you are taking?”
“Go with God. God be with you.”
And so it went, and then she left. She was here 10 minutes.
I didn’t want Emma to get an infection. I didn’t know what kind of care she had just received, what type of remedy. All this nurse had done, apparently, was to remove the bandage Daphne had put on an hour and a half earlier and replace it with one just like it. I was beside myself; I was distraught; I was in tears.
Just tell me what you are doing there to help my mother. That’s all I ask. Simple.
Monday night I slept little.
When members of the medical profession control you by not giving you information, they cause you to suffer. And, I don’t believe in suffering; I had to find my way through this situation. It hurts when you have trusted someone and then you discover you cannot. It is traumatic when you care about the welfare of another and you can do nothing but watch and wait.
Tuesday morning I phoned Geri, my Hospice social worker/bereavement counselor. She is the only one I trust. She is straightforward and truthful. She is an excellent mediator. She made some phone calls.
Tess called later Tuesday to tell me she had other patients to visit and wouldn’t be able to come. Her normal visiting times are Monday and Thursday afternoons. Tess said that she was at our house at 1:00 Monday. She said she rang the doorbell, waited, rang it again, then phoned but didn’t leave a message because she knows that I don’t like people to call when they’re at my door because then I have to go answer the phone instead of answering the door. So, if she called, I had no idea. I never heard the doorbell or the ringing of the phone. At 1:00 Monday I was right here, folding laundry.
Tess said she thought maybe I was in the shower. Why would I be taking a shower when I know she is coming? That doesn’t make sense. Tess has been coming here for two years. She knows us; she knows our habits. She has been often too busy to visit us lately. I really like Tess. She is a great nurse, and as I have said, a Mother Teresa.
Maybe Tess is the friend I lost when I saw the shooting star presaging I would lose a friend as happens on those rare occasions I see a falling star. I should have closed the shutters, drawn the curtains.
Ultimately, the team manager, a nurse, came Tuesday afternoon, changed Emma’s dressing and brought some extra. I asked Daphne to come over so she could listen to the team manager and get instructions. The sore is healing. The team manager gave me her cell phone number and told me to call her after hours before phoning the answering service so that she could contact the on-call nurse and apprise her of our specific needs. That is comforting.
Yet, there is a hole in the sky, an empty track of a star that faded long ago.