Concern of our Hospice organization for Emma has fallen through the fissures, because Emma is on a plateau, albeit one running down a slope towards a precipice, where we could slide off headlong, like lemmings, unnoticed. This Hospice outfit treks no tundra, Think of the money. They are lush with new patients. They have reaped the harvest of another Hospice organization that recently shut down. Consequently, our Hospice members phone us to reschedule appointments. I confirm with the caller the new dates I have just recorded on my calendar. Nonetheless, the scheduler neglects thoroughness; therefore, I find myself waiting and wondering for the hour I have set aside while no one shows, only to find that same person showing up unexpectedly another day. “Is there anything wrong?” the person asks, as I’ve just returned from the store unpacking bags of groceries littering the table, countertops and chairs in my kitchen; I lost in a beige sea of emptied recyclable plastic bags floating across the floor, reorganizing the refrigerator and freezer trying to find space for it all. (I have to buy a lot at a time against the event I do not get out again for a couple of weeks, since I do not have a car, therefore have not only to rely on a driver but also on an aide’s being here to attend to Emma.) As soon as I put away the groceries, I have to launder a load of Emma’s clothes and bed linens, and return an important phone call.
“Is there anything wrong?”
“No, it’s just that I can’t seem to get this cakey chocolate off my remote from the bonbons I’ve been eating while warming the couch watching Oprah reruns.”
Yesterday, I tried calling my aunt. She is nearly 98, in a nursing facility an hour from here. I have been trying to reach her for weeks; her phone rings 10, 11, 12 times and no answer. Maybe she cannot get to the phone, as sometimes happens, maybe it is mealtime, maybe she is in the hospital, maybe she has gone over the edge. This time the phone is answered on the second ring. Thank goodness. Oh. It’s another, much younger, woman with a strong voice. She has been there two days. I am so sorry, I say. “It’s all right,” she tells me.
I call the main number of the center. They have moved my aunt at her request. She didn’t like her roommate who kept telling her what to eat. They give me her new phone number. Since my aunt sometimes gets confused, I call the nursing station first and speak with her nurse to find out how she is. “What is your name?” asks the nurse. I tell her. “You are not on her contact list. I can’t give you any information.”
“But, I’m her niece, she is my godmother, she has been a second parent to me.”
“I am sorry; I’ll lose my license; I can’t tell you anything. There are a number of names on her contact list; yours is not one.”
Yet this is the same nurse who was forthcoming with information last winter; and I have been to visit my aunt several times since then, thanks to a kind Hospice volunteer who drove me two hours round trip to see her.
“She could die and the family wouldn’t know!”
“Let me transfer you to her room,” says the nurse. I am too upset. I cannot talk to my aunt in my present state. I hang up. I email my stepmom and she assures me that I am on the list. She calls my aunt and emails me that she is fine, loves her new room and roommates and is looking forward to my call.
Back in my kitchen preparing dinner, let me get this straight: The doctor conscientiously prescribes medication for Emma. How many times do I have to say to the one responsible for ordering our delivery, “We are running low; we are going to run out; let’s hope there’s no hurricane or snowstorm.” Yet, it runs out. I have to phone after hours, because, remember, I’ve just returned from the store, we’ve had a guest in the house, I am doing laundry and returning an important phone call, then getting dinner ready in time for the aide to arrive to feed Emma; I pour the last pill from the bottle; it drops into the dish for her evening medications, leaving none for the morning.
The answering service says they’ll have to find the triage nurse and she will call me. Finally, a nurse calls. “It’s on the truck,” she says.
“What does that mean?” I ask. It seems a sensible question. Coming by truck from the Yukon or from the pharmacy down the street? The check is in the mail.
“On the truck, to be delivered tomorrow.”
“Well, she needs it in the morning.”
“When does the truck usually come?” asks the nurse.
“In the afternoon.”
The nurse goes on to tell me that if Emma were in sudden pain and she needed medication for that, it would be delivered right away. This is solely a maintenance medication, so it’s not important. –Only that she could get constipated and her intestines back up and she get an infection with her already compromised immune system. I attended an event last week about the evolving legacy of the Coastal Zone Act, hosted by Delaware Wild Lands, whose former executive director and son of the founder I had interviewed a few years ago. He was my age. He died suddenly last year of septicemia.
“Emma is on a plateau,” they told me about a month ago. “We have to ask you: Do you want our visits to be less frequent?”
What are they getting at? What do they want me to say? Is this an ultimatum? I don’t know how to address this question other than to be straightforward: “I appreciate and can use the support you are giving us now; I can see that Emma benefits by it; but if you are too busy and have more urgent patients to see, I do not want to be a drag on the works; then by all means, decrease the frequency of your visits.”
“Well, we’ll play it by ear,” they say. The next time they visit, arises the same question. Hmmm. I thought I already answered this. I repeat my earlier statements. “And by the way, Emma’s almost out of two of her medications, as I’ve said. Are they on their way?”
“Whatever the computer says,” I am told. “If the computer says you need another shipment, they will come.”
“Um, but what about the human who tells the computer what to do?”
“You’ll get them when the computer indicates. Don’t worry. You won’t run out.” Playing it by ear.
When the nurse calls 20 minutes before her scheduled visit and says she can’t make it because they’ve sent her to the other end of the state, I ask if she wants to decrease the frequency of her visits. She tells me we had decided to play it by ear. I say I need to plan, so I can get things done without interruption, like writing this blog. She says O.K., we’ll decrease the frequency of our visits.
Why did it take three conversations to arrive at that? I have stipulated on each occasion that I do not wish to be needy, tugging on their sleeves when another, distressed, patient needs attention.
This series of events makes me think I am being punished for something I did but I don’t know what. These people didn’t used to be so offhanded.
While I am rehearsing this symphony, let me play this passage: My stepmom’s mother suffered for many years with Alzheimer’s. My stepmom’s sister was their mom’s caregiver, and she experienced many of the same occurrences with agencies as I do now. They place little value on your time, dignity and intelligence. One would be inclined to think they are not smart enough to think we are not smart enough to see through them.
Caregivers from health care agencies, I have been told, are not permitted to tell patients and family caregivers the complete status of the patient or what she might face. How can you prepare for the eventualities without the knowledge to do so? Only Emma’s doctor is straightforward and to the point; his knowledge and advice have supported me through many events and kept me from being blindsided by the changes. This brings to mind Leo Tolstoy’s “The Death of Ivan Ilyich.” Ivan Ilyich, on his deathbed, reviews his own life while he observes the comings and goings and conversations around him: his wife and family avoid the subject of his death, pretending he is only sick and not dying. Only one person sees the reality, does not fear death and can relieve his pain: the unprepossessing servant. Through his servant, Ivan Ilyich realizes that compassion and sympathy mark the authentic life while self-interest marks the artificial.
Frankly, I think the lemmings get pushed.
This manner of handling Emma’s case seems to me they’re saying, “Oh, Emma’s not important, any more. She’s been with us too long. It’s Christmas. We have new toys.” It makes me feel that we are unworthy. Yes, I am angry. Just say what you mean the first time. Don’t be stringing an artificial tree.
I feel so tired. I hate turning on the TV; I can’t tolerate the noise – the commercials every six minutes and the empty-calorie conversations. This attitude towards us – it is all about money, not humanity – makes me want to crawl into my music, turn up the volume and blast the mystic “Prometheus” chord Russian mystic composer Alexander Scriabin (who died in 1915 at 43 of septicemia) used in his work “Prometheus: The Poem of Fire,” Op. 60 (Valery Gergiev conducting), especially the concluding chord of the piece, and not have to listen to my neighbors, the circus people, or this incessant foggy dribble. This mystic chord, it is said, Scriabin favored, often making use of it, and, to me, this is the chord of chords. Many years ago I went in search of the lost chord. Now I believe I have found it. It blasts to smithereens whatever I have been thinking, and fresh thoughts arise from the ashes. I’ll just pull out all the stops and reemerge as an astral soul.
This is my getting an iTude – my friend R’s term for a fresh attitude. He should know, after falling through the cellar door in the alley sidewalk and tearing the pad of his big toe. (He should have been wearing shoes….) Anyway, there’s always more, so here’s this: Alexander Scriabin’s “Mysterium,” or “Preparation for the Final Mystery.”
–Samantha Mozart, November 11, 2011