Saturday, December 31: A Gaggle of Strangers. No, it wasn’t the incessant chatter of a flock of starlings in my friend R’s lighted woods outside his tree house apartment, it was the cacophony of strangers downstairs from 7 a.m. until 8:30 – chattering in stage whispers, agitatedly, like a flock of starlings before the storm. I don’t even know who they were. I think I overheard that one of them was a nurse sneaking in early, before I arose, to make her daily visit. For me, she was the rooster crowing from the top of the chicken house at dawn. I am awakened now. I am irritable. Two nights ago I didn’t sleep; during the last two, sleep has come hardscrabble. But, then, it’s not about me; it’s about however the chicken chatterers can manipulate my life to serve themselves.
Ron, our Hospice continuous care day nurse, a licensed practical nurse (LPN), whom our Hospice team nurse, Tess, specifically requested to care for Emma, lives up to his reputation as wonderful. He is the best. He says he loves his work. That is obvious. He hovers over Emma tending to her smallest need, checks her vital signs every two hours and sees that she is clean and dry. She sleeps peacefully since she wore herself out at 2 a.m. Ron sings and talks to her and kisses her goodnight when he leaves.
Conversely, as the day wears on, I become increasingly anxious. I do no want Madam Queen, the bully nurse from last night, to return. Often I think better that I deal with these such situations as I have experienced in the past, than endure the disrespect of a rude health care agent. I hesitate to phone the patient care administrator, though, the superior with whom I spoke the day after Christmas to seek guidance on managing Emma’s agitation and to complain about the on-call nurse who simply told me over the phone that Emma had experienced a decline, this superior who refused to listen, talking over me. What should I do? I wind up calling her, anyway.
“That nurse doesn’t want to return,” she tells me. Good. That’s a relief. Then, “We’re going to discontinue the continuous care,” she informs me.
“But Tess told me Thursday that the continuous care would run through Monday until Tess returns to evaluate Emma and decide whether to end the continuous care,” I say. Tess has the weekend off and in her absence another registered nurse is to come check on Emma daily. After a period of the administrator’s talking over me, she says that she will talk to the on-call doctor for a decision. I say, “But, Dr. Patel is Emma’s doctor.” She tells me she will notify Dr. Patel.
I need to get out of the house. Ron is here, so is our state attendant services aide, who comes in the morning and again in the evening to help feed and bathe Emma. I walk to the post office to mail my daughter’s birthday card. It is about a 10-minute walk round trip.
On my walk, I recall that our compassionate, concerned chaplain has told me that she is on call this weekend, to call her if I need anything. This is an administrative dilemma, I think, the kind that everybody dumps on our Hospice social worker/bereavement counselor, Geri: “We can’t deal with Samantha. She’s hard to take. Let’s dump it on Geri.” But Geri has the weekend off. The second string is on duty; a fact becoming garishly obvious as the day wears on. It seems a losing game. I resist the urge to join the lemmings on their rush to the edge.
As I enter the front door on my return, the phone is ringing. “What timing,” I say. “It’s been ringing,” says our aide. I run to answer it. I have to talk over myself because the answering machine has picked it up; cacophonous. “Hi, this is Dr. Patel,” I hear the voice say.
He is calling to see how everything is going and what’s happening. I say, “Oh, you don’t want to hear it all.” “What don’t I want to hear?” he asks. It seems every time I have one foot lifted, about to step over the edge, he catches me. I gloss over the petty stuff and tell him briefly about the bully nurse, then review Emma’s recent events, including her heart rate initially rising to 146, of which Tess and the petty tyrant nurses had already apprised him. He listens. He tells me that Emma should stay on continuous care until Monday when Tess will come evaluate her state. I feel 300 percent better. What a relief.
Sunday, January 1: Strangling Gaggles. Emma became responsive this morning. She took her medications, drank fluids and ate her breakfast. A nurse was scheduled to come early in the morning. She got called to an emergency. Emma remained calm most of the day. Ron gave her a glass of warmed apple cider early in the afternoon. She is calm, resting. A substitute nurse arrives. Many substitute Tesses have come through this house over the past many months on Tess’s days off. The nurse does not introduce herself. “Who are you?” I ask. She tells me her name and says she has been here before. “Oh, I’m sorry,” I say. “So many nurses have been through here I don’t remember all their names. “Well, you have your team and you have me visiting,” she replies. “I’m not that stupid,” I counter. That left her spluttering to herself. She wants to cancel the continuous care for Monday. “I was told by Tess and again yesterday that Ron would be here through Monday,” I tell her.
“Well, I’m discontinuing it,” she says.
Having been told that Ron would be here I had made plans, I tell her. I was going to visit a friend who lives a half hour from here to get some mustard greens, spinach and radishes from their garden – where else could I find fresh local greens in winter here? I was so excited to be having a day out – my attendant care services chauffeur would drive me, we’d have lunch at my friend’s, and maybe with another friend, network about new business marketing ideas, and in the end I’d eat fresh, crisp greens that didn’t taste like they’d resided in the back of a refrigerator for a month.
Nevertheless, this nurse, this substitute Tess, arbitrarily decided to cancel the continuous care. Here, I’ll call the patient care administrator and you talk to her, she told me. I talked to her yesterday I told her and Dr. Patel (whose name this nurse couldn’t get straight and pronounced as some sort of exotic herb or spice) called me afterwards and said Tess would make the final evaluation Monday morning.
The two of them, the nurse and the administrator, overrode Tess and Dr. Patel and shredded the whole plan. When Tess comes tomorrow, if she decides Ron needs to be here, they will call him, says the nurse from hell.
“Who will watch my mother tomorrow morning?” I ask her.
“Get someone to sit with her,” she says flatly. I, the sole caregiver, with no family in the area, have no one to call upon. “We’re not a babysitting service,” she adds.
“Will you do it?” I ask her.
“I? Why should I do it?” she replies.
“Well, who would you suggest?” I ask.
“Pay a private nursing agency.”
“Are you buying?” I ask.
“Me? Why should I buy?”
I am ushering her out the door so the fact that I am scraping together money to buy heating oil since the temperatures are predicted to be down in the teens and twenties the next few days plus a wind chill never gets fully addressed.
I call my friends and driver and cancel our plans for Monday.
I grab the phone and sit outside on my front porch. Tears well up in my eyes. Now what? I ask myself. Now what?
The phone rings. The voice is my best friend, my friend of 40 years, the one who knows me best, from Southern California. “I sensed that all was not well with you and you needed support,” she said. She is caregiver for her mother who also has dementia. Our experiences match on the poor service and lack of compassion at these agencies, although I must say Californians have a bigger well to draw from. My friend’s timing was impeccable. Again, I was about to step over the edge and she caught me.
I have another friend, who lives locally, who called me the other day when Emma began being agitated. Her timing, too, was impeccable. How do I get so lucky? I just want to stay tuned in to whatever vibrational frequency it is; so I am very conscious of keeping my thoughts focused, thinking with the higher thought to the best of my ability.
Although, this thought did flit through my mind:
I say to my California friend, “It’s a good thing I don’t have a shotgun, because had I blown that nurse’s head off, it would have made an awful mess all over the rug.”
“Yes, and you would have had to clean it up,” she said.
Then I call my friend with the garden of greens to tell her I will not make it down to see her Monday. I tell her why and relate the shotgun story about having the mess to clean up.
“Ya gotta have a drop cloth,” she said.
–Samantha Mozart, January 3, 2012