Category Archives: Journal – Vol. I

Sunday, February 26, 2012 — After dinner last night I settled in and watched the movie Anonymous until the scene where the loud meowing occurred.

It was Keats meowing – not the poet, but the cat, in my face. He woke me up.

Anonymous asks who penned the works ascribed to Shakespeare. The story is cluttered with characters; and scenes crunch together oscillating between past and present, actions erupting into writers and players being arrested on stage, their speech censored, stories re-spun, performances cancelled: my life on parchment.

A substitute Hospice aide pounced on me Thursday. She showed up at our door early; I didn’t know she was coming: our regular aide was ill, she said. I asked the substitute to sit and wait while I went upstairs and collected Emma’s bath accoutrements. The aides give Emma a bed sponge bath each morning. I finished my preparations for the aide and gathered Emma’s things, about to descend the staircase. The aide hollered up from the downstairs hall, “Hello! Hello! Excuse me! Excuse me!”

{{{      }}}

I don’t know how to answer this. This – Well, what should I call it? – loud meowing occurred once before, when Emma was agitated and the Hospice continuous care bully nurse stood in the kitchen at the foot of the back staircase one night and shot the same words up at me, in the same militant tone. I find myself dumbstruck.

This time I said, “What did I tell you? I asked you to wait while I gathered Emma’s things. Please wait; I will be right there.” But she didn’t hear me; she talked over me and told me not to shout.

She phoned Hospice; she told them I was rude. I phoned Hospice simultaneously and spoke to our team leader. She said, “Didn’t [the scheduler] call to tell you the substitute aide was coming?” No, she did not. Had she, I would have been prepared for the substitute and for her early arrival. So, the aide and I were set up for this unseemly encounter. The team manager asked if I would like Geri, my social worker, to come. I said, “Geri’s good anytime.” Yes, and it was good she came, because this substitute refused to follow my directions (by which I was trying to ease her job on her first visit here), did not know how to draw Emma into a sitting position in bed so she could eat without choking, and ultimately left Geri and me standing holding bowls and glasses of food, while she maneuvered the tray table into position over Emma’s bed. There was more: it took three of us to do a job readily executed by one.

The fiasco turned serendipitous, though, because Geri had a cancellation and by the time Tess, our nurse, arrived and the aide had left, Geri had picked up lunch and the three of us ate and chatted in the warm sun on my front porch. Our camaraderie alleviated my trauma caused by the aide’s indecorous behavior. Earlier in the week, the team manager took me out to dinner, thus bolstering our Hospice team support. I must say, the excellent margaritas at the Mexican restaurant served as superb attitude adjusters.

This weekend, our state Attendant Services Care aide, Daphne, was invited to stay at the Showboat in Atlantic City and see Guns N’ Roses with Axl Rose perform at the House of Blues there. How could I say no, you have to stick to your normal routine and stay here in Delaware to bathe and feed Emma? A good friend suggested I call a healthcare aide who lives around the corner from us. Violet comes highly recommended and loves what she does. Her performance was a smash hit. I am thrilled to have her. Emma must be, too, for she even gives Emma backrubs. Hmm … I wonder if I paid her a little extra – I should be so lucky. Violet has offered her availability for backup almost anytime. Indeed fortuitous.

I would like to believe based upon this story the truth in Voltaire’s postulation that everything is for the best in this best of all possible worlds.

Not so likely would the squirrel and the cat, though: This afternoon I grabbed Keats and held him in my lap in the dining room to brush him. He liked the backrub but the brushing got cancelled at his tummy. He squirmed and jumped down. As I went to pick him up, he latched his front claws into the rug. He was slippery. My nose dodging his lashing tail, I finally pried him loose, picked him up and brushed his tummy – hastily, against his will, while praising his beautiful fluffy fur jacket with the stripes and black dots that look like double-breasted buttons down the front. Preened and fluffed, he dashed outside and across the street where I spotted him streaking across the empty lot after a squirrel that ran up a telephone pole, pausing midway to soliloquize a diatribe against ill-mannered cats.

—Samantha Mozart

February 22, 2012 — Mmm-hello! I have pounced into the middle of this page to show you how very sweet and handsome I am.

I am Keats

I am Keats. Samantha tried out different names on me. That way I could choose which name I liked best. Most of them I just ignored. But Keats I like, because it is a fusion of Kat and Eats. Purrfect.

I like living with Samantha. She feeds me and brushes me and gives me toys. I like catching the tennis ball mid-air as it bounces down the staircase. I also like catching flies. Samantha likes that.

I have quickly established a routine here. In the morning I jump up on Samantha’s bed, tap my wristwatch, put my face in hers, and say, “Do you see me? It is time to get up and feed me.

We get up; she takes a shower; afterwards I jump into the tub to lick it dry. Then we go downstairs. In the kitchen I parade across the floor and with my forepaw point out the cabinet where the food is stored. Samantha says I have come pre-formatted: I wait on the floor patiently, without jumping onto the table, and coach Samantha while she pours the food into my blue dish.

After I eat, I check my appearance in the glass front of the dishwasher, and then I am ready to go outside for the morning.

Hello, Elizabeth-cat. I hear you think you are a queen. Am I not handsome?

Sometimes I have a play date with a white cat. I don’t like that bully black cat, though. Sometimes I hide under the hedge in the backyard and look for rabbits. Often I curl up under the next-door neighbor’s bush and snooze until it is time to come in and eat again

When we have guests, I go into the living room to greet them. I jump up in the chair with them or sprawl out on the couch, proudly displaying my beautiful fur coat and demeanor.

Like ... what?

After they leave, I curl up in my little bed in front of the radiator in the dining room until dinnertime.

After dinner, sometimes I watch TV with Samantha; but when she reads, I curl up on a small, round, fluffy throw rug nearby. Then it is time for a bedtime snack, and usually I curl up on Samantha’s bed and keep her feet warm. Sometimes I prowl around in the middle of the night, but I am quiet until my wristwatch alarm goes off in the morning.

—Keats Mozart
with Samantha Mozart

Photos by Daphne, Emma’s healthcare aide.

February 17, 2012 — Tender in the night he flew to me, out of the blowing snow, just before Valentine’s Day. Come in, I said, I’ll give you warmth, and shelter from the storm.

This is my furry Valentine, the yellow tabby tomcat, with the spiffy striped knee socks and the swirly, marbled dark chocolate back, who adopted me.

I thought of naming him Valentino, my Valentine cat. I’ve called him that, called him Tino for short. He doesn’t seem to care for it. His attitude toward it is, “Whatever.” Anyway, it seems like a heavy moniker for such an intelligent, humorous, gregarious, well mannered gentleman.

I could name him Greg, I suppose. I’ve called him various names to see how he’d respond. Besides Cat, he responds best to Chicken. Ideally, I wanted a name from the humanities. Names I came up with are:

Teddy – for Teddy Roosevelt (adventurous, intelligent)
Matisse – for his beautiful colors and for his initial M on his forehead
Picasso – a little long; nor is he blue, rose or cubist
Pierre – from Tolstoy’s War and Peace
Henri – debonair French name; French artists’ name
Vronsky – the lover from Tolstoy’s Anna Karenina, and those days I’m ready to throw myself under a train
Leo – for Leo Tolstoy, and lions, snow lions
Chekhov – great author
Oscar – for Oscar Wilde, but I already had a cat named Oscar, and my neighbors have a cat named Oscar; I’d call Oscar and all the neighborhood cats would come
Scotty – for F. Scott Fitzgerald, but I had a cat named Scotty
Updike – for John Updike
Scriabin – for Alexander Scriabin, one of my favorite composers
Sasha – for Alexander Scriabin
Misha – for Mikhail Baryshnikov
Diaghilev – for all the arts and humanities
Tchaikovsky – another favorite composer
Mozart – the obvious; too common, perhaps
Schubert – good – cats like trout and crooning lieder in the night
Orhan – for my favorite living author, Orhan Pamuk, author of the novel, Snow; but, then, Orhan Pamuk names many of his characters Orhan – it could get confusing
Hemingway – the obvious; too common, perhaps
Wolfe – for Thomas Wolfe – sounds like a dog
Steinbeck – possibly

You’re probably thinking, “Oh, she should name him [Obvious Clever Name].” Well, I haven’t come up with that one yet.

So, in the middle of the night, when he jumped onto my bed, I thought, “Keats.” (Or did he say “Keats” when he jumped up? Was it a waking dream?)

But, getting back to the M … Viewing it upside down it becomes a W – Wendell, for instance, or Winston. Looked at sideways, it becomes a ∑ (sigma) – ∑und (Sigmund).

And then, this middle of the night thing: Plus, I have given other family members names starting with K – my daughter Kellie and my dog Kolia. Sometimes when I was calling them, I’d get their names mixed up; I’d summon my daughter – “Kolia!” She didn’t like that; nor did Kolia appreciate being called Kellie. So now I will have three to confuse. My granddaughters, whose names both begin with S, will enjoy it, when I call the cat Kellie or Kellie, Keats. One will say, “Nana …,” flatly and roll her eyes, while the other will say, “Well, you know, she’s getting old.”

So, Keats it is. Sorry R and Kellie, I know you liked Valentino; but I think he would have preferred being called Chicken to Valentino.

Away! away! for I will fly to thee … Already with thee! tender is the night.  I am happy in his happiness.

—Samantha Mozart
… with John Keats
& F. Scott Fitzgerald

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.

—Samantha Mozart

He had left my flower bed just before dinnertime, returning later, when I was out on the porch after eating my evening meal; I brought him in, he declined the food I put out for him, and settled into my bed for a cozy, comfortable evening. I was certain by then that he was much loved by his people.

Saturday, February 11, 2012 — It’s snowing. When I got up this morning, the dogwood branches outside my window looked like chocolate candy drizzled with sugar icing. The roofs and lawns were coated white. A good day to snuggle in front of the fireplace with that certain someone. Now midmorning little snowflakes continue to fall, small pearls from heaven mixed with tears of joy; the offering has become a wintry mix. (Sounds like a salad, doesn’t it? “I’ll have the wintry mix with raisins, sunflower seeds, rigmarole, romalade dressing, and an il postino to drink.”)

Three days ago, a handsome fellow came schmoozing – a yellow tabby tomcat. He wears smartly striped socks, has dark chocolate marble swirls on his back, butterscotch and chocolate whiskers and butterscotch eyes. I was sitting on the front porch and out of nowhere he came running up the steps to me – “Mmm-hello,” he said. He rubbed against my legs, jumped up onto the bench, rubbed the chocolate M on his forehead against my arm and, finally, climbed into my lap. Tom that he is, he peeped in the window, seeking Emma, I suppose, or more likely, chicken. He wears an attractive collar. Someone loves him. He’s conversational and knows English – when I say house, he looks at the house, and other words I say catch his attention. So, he’s got people. But, I’ve canvassed the neighborhood and no one seems to know where they live.

The night before last, I think he was out all night, because he was on my porch before I went to bed and lying on my next-door neighbor’s porch when I got up the next morning, Friday, the 10th. A mean-looking black cat, back arched, tail raised in a question mark, had him pinned against the wall, ears back. “Stop that. Go away,” I called to the black cat, as I stepped outside to pull my mail from the box by my door. The black cat looked at me and said, “I hear you, but no dice. I’ve got this guy right where I want him.” I went inside and put on my shoes and headed next door. The black cat saw me coming and left. The schmoozer came running to me. “Oh, thank you, thank you,” he said.

I sent Linda, my driver, to the pet store to buy cat supplies while he was curled up in the tulips and daffodils in the flower bed in front of my porch — gearing up for his night on the town, I guessed.  When he finished napping, around dinnertime, he disappeared and then came back. I brought him inside and poured dry food into the little blue cat dish Linda had picked out for him. “No thanks, I’ve eaten,” he seemed to say, “But I’ll have a drink of water.” He explored the house, upstairs and down, up and down the front and back staircases, rolled around on the living room rug where Jetta, our teacup poodle, used to spend her time, and then was ready to go out.

OK, that’s it, I thought. I guess he’s going home, back to his loved ones for the night. I told him that I’d come out and look for him before I went to bed and if he was here I bring him in. I looked later. I didn’t see him.

He pulled a typical cat trick, I decided. All cats come with a bag of tricks, given to them by their mothers when they are kittens. He just wanted to come in the house, inspect and see if I had anything particularly enticing to eat. “Cats work really hard to get you to feed them,” a friend who has two cats told me.

Later the next day, today, the 11th, the schmoozer came around after the snow melted. He napped in my flower bed awhile, then he disappeared, leaving a circular indentation between the sprouting tulips and budding daffodils.

Sunday, February 12 — I ate dinner last night, looked out on the porch after dinner, didn’t see him, then went to bed early. I woke up around 1:30 in the morning. It was snowing. The ground was frozen in white that looked like thin cake icing. The temperature was 24 degrees Fahrenheit; the wind blowing 30 miles an hour. I stepped out onto the porch. He came running up to me. I brought him in.

Oh, no, I thought. I’m going to have a cat sleeping on my pillow and I’m allergic to cats. Besides, it was not exactly the face on the pillow next to me that I had envisioned waking to in the morning. Nonetheless, I fed him – he ate this time and drank some water; I set up his blue litter box for him, and then got back into bed. He joined me. My feet were cold, and that’s where he slept all night – on top of the blankets, at my feet, keeping them warm.

He doesn’t seem interested in Emma; he just lets her be. I suppose he has a sense about her condition; besides, she’s not up, running around feeding him and pouring litter into his box from a 25-ton bag.

As soon as I got out of the shower this morning, he jumped into the tub and lapped up the little puddles of water. Apparently, this is far more interesting to a cat than drinking water out of an actual bowl placed next to his blue cat food dish in the kitchen. He hasn’t wanted to go out today. Who can blame him? It’s too cold.

“Amber Persuasion,” my friend R calls him.

My father’s birthday is February 11. Before he died in 2004, he told my stepmom, who loves dogs, that she’d probably replace him with a dog and name it Howard, my father’s name.

Who knows if he’ll stay, my furry Valentine. If he does, I shall decide what to name him. “Once you give him attention and bring him in, you’ll have a friend for life,” my friend, Jean, a cat person, tells me.

—Samantha Mozart

Thursday, February 9, 2012 — The phantom of my blog came up behind me early this morning and tapped me on the shoulder. “We’ve got a bleed out going on over there,” he reported.

“I know,” I replied. “It’s been going on for more than a week, all I have are Band-Aids, and they are ineffective.”

Geri, my Hospice social worker/bereavement counselor called me at 8:30 yesterday morning to give me a heads up, in case I got no other call, that our Hospice aide would not be able to make it. She was due at 11:30. I called the aide scheduler. There was no one to replace her. “What shall I do, then?” I asked the scheduler. “I can’t just leave her lying there without being changed and fed.”

“I don’t know,” she said with finality.

“What about Friday and Monday?” I asked. “We’ve known for well over a week that she will be off those two days. I have discussed this with the team manager.”

“I will find someone today,” she said. “I will be working on that this afternoon.” No one called.

Yesterday morning I called Daphne, our state Attendant Services healthcare aide, who comes in the evenings. I had to wait to make the call until she was done working as a crossing guard at the elementary school. Knowing that she does not have to work for us in the mornings, she often makes other appointments – you know, to take care of her actual life. Fortunately, she had made none for Wednesday and was able to come change, bathe and feed Emma. I cannot lift and turn Emma in her bed; I have neither the strength nor the height to give me leverage.

Prodded by the persistent haunting of my phantom, and having meetings and other things to attend to this afternoon, I sprang out of bed early this morning (at my non-morning person best) and called Hospice. Knowing our team had team meeting all morning as soon as they had time to get their coffee and settle into their bunny slippers or whatever, I called at 8:30:

Me: Is our aide coming this morning? She called out yesterday.

Aide Scheduler: Yes, she will be there as scheduled.

Me: And have you found an aide for Friday and Monday?

A.S.: No. I will be working on that this afternoon.

Me: You told me yesterday that you would be working on it yesterday afternoon.

A.S.: Well, I didn’t get to it.

Me: I need to know, because I have plans Friday, a driver coming to take me to the store and to pick up my new eyeglasses so I don’t have to wait another week, when the driver comes again, to pick them up.

A.S. I assure you we will find somebody.

Me: I’ve heard that before and nobody shows up.

We hang up. I consider the situation. The phantom proceeds to light little fires to place beneath certain posteriors. I call back and ask to speak to the team manager, with whom I spoke a week ago about finding a replacement aide for Friday and Monday.

Team Manager (her voice sliding down the tonal scale): Well, now, Samantha, just relax. It’s only eight-thirty in the morning.

Me: Yes, eight-thirty in the morning a week after I discussed finding a replacement with you the first time, and nothing has been done.

T.M.: I heard what the aide scheduler said to you, that she has somebody but she doesn’t have a name yet.

Me: I don’t care about a name; I just need to know she has somebody definitely for eleven-thirty tomorrow and Monday.

I hang up, turn, and there in front of me stands the Head Gargoyle of My Subconscious.

H.G.: You don’t deserve that tone.

Some people find me hard to take. I am not hard to take; I am simply outdated. If I had done my job the way the generations of today do, my employers would have found me hard to take and gotten rid of me. Those of the Outdated Generation will recall Sergeant Joe Friday: “Just the facts, ma’am.” Whatever happened to that?

I call Hospice again and speak with our chaplain, to catch her before they go into their team meeting so that she can advocate for me and tell them the real facts of the situation. I am at the point of tears.

She says she will and tells me the team manager has my best interests at heart.

I call the ophthalmologist’s office and leave a message to find out if my glasses will be ready for pickup tomorrow.

A girl from the Brittany-Tiffany-Amanda generation calls me back. I answer the phone just as my machine picks up the call. “Hello, hello,” I say. I stop the machine. She starts talking, and talking, and talking, then says thank you and is about to hang up. “Whoa! Wait a minute! Whoa!” I exclaim.

“You don’t have to shout,” she says.

“Well, you won’t stop talking and I’m trying to make you hear me.”

“If you weren’t talking on your answering machine and talked on your phone …,” she starts—

“I’m not that stupid,” I say. “I am talking on my phone.”

Still she doesn’t listen. Finally I make it clear to her that I need to know before tomorrow if my glasses have come in, so that I can pick them up. She calls back later and in her best high-pitched Tiffany voice informs me that they have just come in, and “Thank you,” she sings.

The delivery company phones to ask me what time today I want Emma’s gel mattress to be delivered. With the increased dosage of Haldol, Emma moves very little in her bed, so she has the beginnings of sores on her lower back and heels. We put pillows under those areas, but she manages to wriggle off.

I tell the delivery company morning will be best because then in the afternoon I will have help here to place the mattress beneath Emma and on top of her thin hospital bed mattress. The woman who calls says OK. Soon after, she calls me back. “He has a lot of deliveries this morning and can’t make it until later in the afternoon,” she says.

OK, whatever.

When the Hospice aide comes this morning, she says that she was out sick yesterday, having caught some kind of a bug at a healthcare facility. She tells me none of her patients knew she wasn’t coming yesterday. They said, “Where were you yesterday? No one called. No one came.”

Later, the team manager calls to tell me that I will have a CNA, and her name, Friday and Monday. I thank her.

Geri and Tess, our Hospice nurse, come in the afternoon. They tell me that because of the continual changes in their patients’ statuses that healthcare aide visits cannot be scheduled too far in advance. OK, that makes sense. Finally, the facts. Geri is excellent at conveying to me the straightforward facts. Instead of keeping me in the dark, all the scheduler would have had to say was, “I can’t get someone for you this far [a week, two weeks] in advance, because we won’t know how our patients’ conditions will evolve.” Simple. That would free me to make my plans. It would also save a lot of kindling and firewood and thus freeing the phantom of my blog to go about his normal activities.

Tess re-dresses Emma’s wound, which people whisperer Nurse Mirabel had come and dressed last evening, placing on it a more permanent, cushioned dressing to prevent further trauma and help the wound heal. Tess brought padded heel protectors and affixed them, as well. They are like open-topped and open-toed blue and pink plaid shoes with a Velcro strap fastener. Fancy.

The gel mattress was delivered midday. It is rolled up. It weighs a ton. I cannot lift it. The Certified Nursing Assistants (CNAs), Tess tells me, are trained in how to place the mattress on the bed with the patient in the bed. Tomorrow morning Daphne will overlap with the Hospice CNA to give me time to grocery shop and pick up my glasses. Hopefully they will successfully place the gel mattress on Emma’s bed while I am out.

Tess told me that Dr. Patel wants me to decrease Emma’s Haldol to half the dose mornings and evenings, now that her agitation is stabilized. I thought he might. Should she become agitated, he says I am to give her one milligram per hour, as needed.

February 10, 2012 — My driver, Linda, took me to pick up my glasses from Brittany-Tiffany-Amanda, who had me sit at the optician desk in the middle of the ophthalmologist waiting room. She will fit the glasses. The glasses have graduated lenses, for near, arm’s length, and distance. I tell her that when I hold out the paper in my hand a certain distance the print is not clear. “That’s not arms length,” she says in her high-pitched singsong. And we are off: “Am I speaking English?” I ask. “Do you speak English? Do you comprehend English?” She assures me I am and that she does.

“I cannot have a conversation with you, a reasonable dialogue,” I say in frustration.

She whines, “I am not going to let you put me through what you put me through yesterday.”

Then, like an automaton, wordlessly, she pulls out a box (I’m hoping it’s not Pandora’s) from under the desk, opens it and lays out an array of glasses cases, as if spreading before me a royal flush. I am about to create a scene. The waiting room is full of people – parents, kids (I am trying to figure out what holiday this is, that the kids have off from school yet again), grandparents – I shoot up from my seat and fly over to the counter. “Whom do I complain to?!” I demand.

“Oh, I don’t know,” the girl sitting behind the desk says without looking up from her computer screen. “No one.”

“No one?”

“No one.”

Where are my friends R and Jean to fashion language for me when I need them?

When I return to my seat Brittany-Tiffany-Amanda has enveloped my new eyeglasses in a hot rose-pink case. “Why did you do that?” I ask. “I did it because the color matches your [wire] frames,” she says. The whole time I am sitting at her desk, scenes from a Seinfeld episode flash into my mind; I can’t pinpoint which one. (If you recall, please tell me.)  I tell her to get out all the cases again whereupon I choose a ’40s retro floral pattern, grab Linda from the chair where she is reading, and exit posthaste.

Linda takes me grocery shopping to our wonderful Willey Farms where I pick up some locally grown collard greens and French-style macaroni and cheese made with butter and cream that Thomas Jefferson would exude pride in bringing home from Paris, and then to the supermarket. I get home, a yellow tabby tomcat is sleeping in the tulips and daffodils in my flower bed, and Emma is sleeping peacefully on the new gel mattress Daphne and the substitute Hospice aide have efficiently settled onto the hospital bed.

A friend sent me a message stating that her roller coaster is beginning again. I reply that it’s a wonder I haven’t been blown off the top of mine by now.

—Samantha Mozart

I wish to acknowledge that my ideas to use “bunny slippers” and the “Brittany-Tiffany” generation names are lifted from those my sister Kathleen Long used in two of her novels. This is a nudge in her direction.

February 5, 2012 — When I stand by Emma’s bed watching her sleep, I cannot believe how beautiful she is. At 97 she is still an amazingly pretty woman.

My brother phoned from North Carolina just when my gargoyles were looming largest this week. He said he sensed strongly that something was going on and that he needed to call. He said he wants to come up here to Delaware, finally, and see his mother, who he knows has been calling for him. He is afraid, though. He doesn’t know if he can handle it. In September 2010 when I had the 96th birthday party for Emma and the whole family came and she ate nearly the entire giant cupcake with the icing piled high, looking more like a castle turret than a little cake baked in an oven, my aunt, then 97, came, escorted by two friends, from an hour south of here, and got so upset when Emma didn’t acknowledge her that she cried and had to leave. They were very close, sisters-in-law, and enjoyed lots of laughs together dating back to the late 1930s. This upset my brother.

When he phoned this week, he said his wife wouldn’t be able to get off work for another six weeks and he didn’t think he should wait that long to get up here. He’d rather see Emma now than wait till her funeral, he said. But, he was trying to figure out how he could do this. He won’t stay longer than a day or two, I am sure. I offered him plenty of free food and Emma’s bedroom, which she no longer uses, and her luxurious king-size bed.

Of course, accommodations are not the real issue; they are merely the icing. It’s the same as with drug doses and nurses’ visits – I strive to get at the real problem and have been after the head gargoyle to step forward and spout fresh insight into this pool of confusion. My aunt was shocked to see my mother in her demented state even though I had forewarned her. I apprise my brother regularly of Emma’s condition, but unless you are here regularly, you would be shocked. He hasn’t seen her in nearly a year and a half.

Constantly dredging my mind for solutions, I thought about my brother’s coming and called the can-do person in the family, with the anchoring character – my daughter. She lives an hour south of my brother. I asked her if she could get a couple days off from work and drive up with him for moral support and stability, like a centerboard on a sailboat: it runs longitudinally along the hull to stabilize the boat and prevents it drifting with the wind. She said she’d see what she could work out, but that it would mean making two trips – the second for the funeral, I suppose. OK.

I sense that once Emma sees her son, she will be ready to go.

While all of this was going on this week, I also had required paperwork to attend to for the fiscal manager of our state Division of Aging Attendant Care Services program – W-2s, federal and state taxes, unemployment taxes, unemployment educational fund taxes and a letter to write to a former employee seeking FICA reimbursement, since our fiscal management organization misinformed me about making required deductions after I asked about them explicitly on three separate occasions.

I am not needy – well, I could use extra help sometimes – I tell you about these personal things because you may be experiencing something similar and perhaps you’ll find my stories supportive. I like to think that when I stand up for myself, I stand up for others, too. It is comforting to know we are not alone and that there is ultimately a way through. It seems that when I have done all I can and am at the end of my rope, at the moment I finally get the courage to let go, help comes.

Dr. Patel, the last time he was here, said I should have my cataracts taken care of. Since he is always right, Friday I went to the eye doctor’s, the same ophthalmologist who took care of my father’s and stepmom’s cataracts. When it was time to read the smallest line on the chart and I couldn’t spot the “Made in China,” I asked if they could bring me a vitamin bottle to read. I can’t imagine that anyone beyond the age of 18 can read those labels.

It turns out my eyes are pretty good, actually – only a slight change from two and a half years ago when another ophthalmologist told me I had developing cataracts and would need them operated on soon. I was concerned about who would help me during the first days after the surgery and take care of Emma. This doctor said my cataracts are in the early stages and are fine for now. He and acquaintances want to establish a caregiver teaching program, he told me. He asked me what I did career wise, and when I told him I am a writer, he said he is too – he has written children’s books, a spy novel, sold on Amazon, Lethal Hindsight – intriguing and fascinating developments – with a new spy novel about to be published – Robert Abel Jr., MD.

I found another book I’d like to read, not published for Kindle, disappointingly, West with the Night, by flyer Beryl Markham, published in 1935, with an African theme similar to Out of Africa and The Flame Trees of Thika. As a woman who loves literature, is a romantic and loves airplanes, flying and adventure, I think I would like this one. It appears beautifully written; I had a “look inside” on Amazon.

Stories about flying remind me of when I worked for the commuter airline that flew out of Los Angeles International Airport (LAX). We flew groups of Japanese tourists to the Grand Canyon. After one flight landed, a Japanese man said of our pilot, “That pirate is a good fryer.” My friend Mariko, from Japan, has told me that our letters r and l are interchangeable in Japanese; for instance, Mariko’s name is pronounced Maliko. Another time I was standing in the air terminal with some passengers waiting for their flight. Our pilot, a Brit, walked up to us. “These people are nervous about flying,” I told him. “I’m a bit nervous myself,” he replied.

Thankfully, our 19-passenger airplane had instruments to guide us through the night. All you can do is keep your nose up and your wings level and try not to fall out of the sky.

– Samantha Mozart

February 5, 2012 — There arose some confusion about how much Haldol I was supposed to have given Emma when on Tuesday afternoon, January 31, Tess, our Hospice nurse, arrived to assess Emma’s condition – one milligram every hour as needed or two to three doses only and then call Hospice. Well, I did call Hospice (after eight doses) and I was told to give another dose.

That’s when the whole center of the stage collapsed, and I fell through, ending up with Stephen King’s “boys in the basement,” whence sprang forth into the spotlight the gargoyles of my subconscious.

I envisioned myself on Anderson Cooper 360 in drug overdose trial highlights along with Michael Jackson’s doctor. I only followed Dr. Patel’s prescribed dosage, the directions on the bottle, doing what I thought was best to ease Emma’s agitation and keep her as comfortable as possible.

Not taking the time to get out my soapbox, I simply stood my ground and launched into how because some people are doctors and nurses, they think they are smarter than everybody else – and they’re not – and therefore don’t think the layperson is intelligent enough to receive full information, like how many doses, specifically, of a drug to give, or how the drug works, its efficaciousness, the effects and the side effects.

“Dr. Patel wants to know exactly what Emma has been doing,” said Tess. I sat back in my chair, exasperated, and said I didn’t know what else to say; I’d already told everybody everything in detail.” I was burned out.

I believe I was doing a fine job at testing Tess’s patience. Tess is most compassionate. She is a very experienced nurse. She told me I had some choices: go back to the less effective Ativan; give two to three doses of the Haldol and then call Hospice should Emma show no improvement; stay up with her alone all night; or do nothing. I said I felt less supported than before; in fact, that I felt bereft.

Tess said she would double check with Dr. Patel and that either she or he would call me. No one called.

The next afternoon, Wednesday, February 1, I called our Hospice team manager, a nurse. She said that the instructions were to keep the dosage as is. “As is what?” I asked. “One milligram an hour as needed or two or three doses and then call?” The team manager said she would check with the doctor and call me back.

Awhile later she called and said that Dr. Patel had changed the order to five milligrams of Haldol twice a day, morning and night – “He doesn’t want you up all night” – and if Emma continues to be agitated, one milligram every hour, as needed. She told me I had been giving the medication correctly.

Meanwhile, I had been reading about Ativan and Haldol, particularly the latter, in the literature that came with the drug, online at WebMD and other places. These sources give you an overview; they are not explicit. This may be fine for the average layperson, but I don’t want to miss anything.

Late that afternoon, Dr. Patel phoned me. He said that he hoped that this increased dosage twice a day would keep her calm. He said we could give her Ativan, which has fewer side effects but is less effective. He said he could prescribe a new drug, but that since Emma’s system is already adapted to the Haldol, it is better to continue that rather than to give her a new medication and her body having to adapt to that. Without my asking, he gave me the explicit information I was seeking. He explained that once her body adapts more to the Haldol that the dry mouth side effect should subside. He explained how the drug works and related details. He said that as prescribed, I had no chance of overdosing her, unless she had fallen asleep and I was still trying to administer the drug. This, of course, I would not do; I would have fallen asleep by then, anyway.

After his call, I felt much better. Everything was OK. Dr. Patel is the best drug I could have.

He has a calming, centering effect on me. You may smile and go “Mmm-hmm,” but I will tell you that he is one of a kind, like my spiritual teacher friends – compassionate, intelligent, having a practical logic, and self-realized, setting an example towards which I strive – on my good days.

The team manager sent Nurse Mirabel (as I shall name her) that evening to assess Emma’s state. Nurse Mirabel is a tall, well-dressed, attractive, highly intelligent woman from Kenya. The first time I met her, a few months ago, when she told me where she was from, I recited, “I had a farm in Africa, at the foot of the Ngong Hills.” She lit up. She had never heard that opening line from Karen Blixen’s Out of Africa, but, “Ah, the ’Gong (as she pronounced them) Hills. They are beautiful. Yes. It makes me very homesick.” She is from Nairobi. We established a bond by that line. And I am very glad she is here. She is a people whisperer. She helped give Emma her first five-milligram dose of the Haldol – using the one-milligram dropper five times.

“She will fight you,” I said.

“Oh, no,” she said. “She will take it from me. I will have no problem. You just relax and let me do it. That is what I am here for. You are here twenty-four hours. You just rest while I am here.” She is the Dr. Patel of nurses. I thought I saw Emma smile when Nurse Mirabel administered the medication.

The next day, Thursday, February 2, Tess and Geri, my social worker/bereavement counselor, were here. This time there arose confusion in my mind about the ratio of milliliters to milligrams. Dr. Patel had told me and it was perfectly clear. Suddenly, it was not. I had to leave the room to clear my mind. Moreover, the pharmacy had sent a one-milligram dropper from which to administer the five-milligram dosage – and, well, we already know Emma hates the stuff. If she could, when she saw me coming at her with that dropper, she would get up and run. Fortunately, Tess had a two-and-a-half milliliter syringe in her car; two-and-a-half milliliters equal five milligrams. Trust me on this.

Tess said I should call sooner for help. Geri said, “Tell the nurse you want her to come out and assess Emma. She is not permitted to refuse.” Tess told me that since our Hospice took on the patients of a Hospice organization that went out of business a few months ago, she was visiting all her patients in the morning (she visits us once or twice a week) and therefore in the afternoon when it is time for our appointment, she is often sent out on emergencies – because emergencies tend to occur then. Now that I know, we can make our appointment earlier, she visiting us last, thus assuring she will be here. Once I know the other side of any situation, then we can take the best of both to reach a logical compromise somewhere in the middle.

I’m still not keen on getting on my hands and knees and begging an on-call nurse who has just demonstrated her uselessness, to come make an assessment: “Oh please, puhleeeze, puhleeeeeeeze come visit us now, in the middle of the night. Puhleeeeeze.”

I’ll just have to leave my ego in the wings and do it. Patients’ caregivers need patience. But, puhleeeze don’t be texting somebody while I’m trying to get details of a medical condition across to you.

– Coming up, our finale …

– Samantha Mozart

February 4, 2012 — As you will recall, in our last episode, I was up on the catwalk, getting an overview of the action when the phantom of my blog came up behind me and nudged me over the edge. I grabbed hold of a rope in the fly system, my hands slipped down; at the end of my rope I let go, falling into the midst of a heap of backdrops, whereupon I became confused as to which scene I was in; and although I recited my lines thinking I was speaking English to an English-speaking audience, my audience did not comprehend. Following is my Act II synopsis:

Tuesday, January 31, 2012 – I was up all last night with Emma, who was agitated. By midnight, after I had given her eight one-milligram doses, one every hour, of Haldol, I knew I would get no sleep because her condition was not improving, and she was uncomfortable. Therefore, I broke down and, even though I feared getting earless people, talkover and an argument, called Hospice. I explained over the phone to the on-call nurse that I had given Emma eight doses of Haldol every hour as prescribed, with little effect, and I needed some direction. The on-call nurse, a woman from the Islands, who apparently is on permanent vacation, this same woman who told me a few weeks ago by phone “She’s had a decline,” this time said – yes, you guessed it – “Give her another dose and wait a half hour. If it has no effect, call us.”

I asked her to repeat the incidents I has just detailed for her; she had no idea. I told her very politely that I was going to hang up and call back to speak with someone who would listen and had the knowledge to manage the situation. Finally I got the continuous care manager, who was on-call, who said she would send Nurse M, the wonderful night on-call nurse with 40 years experience, the one who last August so helpfully settled Emma into her hospital bed for the first time when she became too weak to climb the stairs. Nurse M phoned at 2:30 in the morning to say she had just “pronounced someone,” she was 45 miles north of us and she would be right down.

Until around 2:00 I had been alternately holding Emma’s hand and giving her the medicine, which she hated: “Don’t give me any more of that!” I found that when I sat beside her, it calmed her. When I left her side, she called, “Samantha, Samantha! Bob, Bob!” (my brother). Then, “Mother, Mother; where’s Mother?” Oh, dear, what does she need? She’s calling her mother. And then, from where she grew up, “Is anybody going to West Philadelphia?” and “Where are my dogs? Maybe she can sleep with me.” And finally, when she told me my hand was cold, “Do you want to get in with me?” That’s that generation. Much of what she said took me back. As a child, when I visited them, I always had to sleep with my snoring Nana or great Aunt Mary in a double bed next to a “Big Ben” wind-up clock with a loud ticking that sounded like my dog Kolia eating potato chips. Of that generation (my parents’) almost all are gone now. Sad; a great loss to us Americans and to the world: The We Generation, the ones, and their parents, who took in a widow or widower parent, aunt, uncle, a bachelor brother or spinster sister.

Anyway, stepping forward in time, thank goodness for my Kindle. I sat beside Emma, pulling up an opposing chair, placing a pillow on it, my feet on that, covering myself with my favorite throw, and reading with the page lit by my little flashlight on my apple green Kindle cover, so that I didn’t have to turn on a bedside lamp that would shine in Emma’s eyes. Speaking of sisters (my father’s and stepmom’s daughter), I read my sister, Kathleen Long’s novel, Chasing Rainbows, and since we have experienced many of the same situations and react to them the same way – in the novel she names the baby the protagonist lost, Emma – I felt like there were two of me – the one beside Mother and the one in the novel.

Kathy’s story is about a woman who upon suffering a series of losses seeks a way to survive. It is similar in tone to my journal here; it is very good and has been at the top of the Amazon and USA Today, among others’, bestseller lists.

Nurse M arrived at 3:30, so bubbly and helpful, eager to impart liters of knowledge, as before. “I buy Sippy Cups at the Dollar Store and keep them in my car,” she said. “I’ll go out and get one for you.” She brought in a little blue Sippy Cup that Emma figured out how to use and adapted to immediately. We poured in an inch of water at a time, making it easier to tilt the cup (or a glass of liquid). Nurse M said not to use straws, because people with dementia may forget how to use them, pull the liquid halfway up, let it go, and end up taking in a lot of air. She also suggested I give Emma something to do with her hands. Emma seemed to like holding the Sippy Cup. It turns out she was thirsty, very thirsty, and kept saying, “May I have more water, please.” She drank a whole cup. The Haldol gave her dry mouth. Yes, she was speaking full sentences and not mute or speaking in cryptograms. Nurse M left, saying to continue the doses as long as needed. Emma calmed after she drank the water and I had administered her 13th dose of Haldol at 5:00 in the morning.

I finally got to bed around 6:00. The on-call administrative supervisor, who had sent Nurse M, phoned at 9:30, saying she hoped she hadn’t awakened me but that it sounded as if she had, and asked how everything was going; she was very kind and thorough.

Midday, sitting at my computer, I find myself gazing unfocused and trancelike out my window at the bare dogwood and maples branches beyond. Our morning healthcare aide has been; Emma is calmer. I want to be productive, work on my writing – and I want to close my eyes and curl up and sleep. Not much chance to sleep: Tess is scheduled to come in the afternoon.

—Intermission …

—Samantha Mozart

February 4, 2012 — I was up on the catwalk, getting an overview of the action when the phantom of my blog came up behind me and nudged me over the edge. I grabbed hold of a rope in the fly system. Not being much for rope climbing, I slid rapidly down to the knot at the end and got rope burn on the palms of my hands. At the end of my rope, I determined I had to let go and fall where I may….

I seem to have landed amidst of a heap of backdrops. It’s hard to know which scene I’m in, what my role is; moreover, when I recite my lines, my audience does not comprehend. I think I am speaking English to an English-speaking audience. I recognize the futility of becoming the director of my own play; I’ve made one hundred false starts, to quote F. Scott Fitzgerald, always interrupted by a change in scene. Following is an Act I synopsis:

Monday, January 30 – In my observations of Emma, I have noted the following: 1) She is still not calmed; 2) She wants me to be sure the dogs are fed – they need to be bought some dog food, and then she hopes they will find a dry spot to sleep. I think that she says this because she has a dry patchy spot under her eye, on which I just put moisturizing lotion, and that she was hungry (has now eaten); and 3) She said, “Maybe she could sleep with me tonight,” speaking of her dogs (the toy poodles she once raised) – does she, after all, miss Jetta, our blue teacup poodle I put to sleep on December 5? Or does she just want to sleep? I do not know what she means by dry spot. I offer her water and other liquids but she refuses them.

Emma’s speaking and actions this afternoon signal another bout of agitation. First, she starts in the morning resisting our healthcare aide’s efforts; by midday, she speaks in cryptograms; by afternoon she is making decipherable sentences. Tess, our Hospice nurse, is due for a visit today. Good.

It is so sad. Emma knows it and I know it. “This is terrible,” she said this afternoon, and “I don’t know what got into me. I can’t get up and go downstairs by myself.” A dilemma; and I wonder who actually cares about this: Just before her scheduled arrival time, Tess calls and says she can’t make it. She has to draw blood somewhere. It is my understanding that our Hospice has left Tess isolated down in our area, 40 miles from the main office, and she is overworked. As far as Emma and I go, we are not priority. I am by myself, alone, in this. Despite they’re saying, “Oh, you can call,” they do not act: A call for action gets a muddled response. I cannot call – I’d sooner pose nude before a mirror and post it on my blog, than to experience the trauma of an argument.

The author of my favorite blog, Lame Adventures, who after recently attending New York City playwright Young Jean Lee’s Untitled Feminist Show, in which the performers, all women, appear nude on a nude stage, photographed herself nude before a mirror and posted it on her blog. Kudos to her for seeing the naked truth and putting it out there. (Do not expect me to appear the same here, ever.)

At eight o’clock I gave Emma a fifth dose of Haldol (as prescribed, one milligram per hour, as needed) and as I grabbed the bottle with the eyedropper in it, I nearly knocked over the glass of water our aide, Daphne, had left on Emma’s over-the-bed tray table. “Oh, dammit,” I said.

“I hear you, baby,” responded Emma. I think she was thinking of my stepfather; she called him baby, not me.

“I know you do,” I said. “Here is some more medicine.”

I inserted the dropper into her mouth. “Gakhh,” she said, turning her head away.

“It’ll make you feel better,” I said, in my feeble attempt to reassure her. “Now try to get some sleep.”

I wonder if Emma is aware at this point that when we leave this earth, we leave naked and alone. We live on it naked and alone, palpably periodically.

As in a scene with my dog Kolia, my black, blue-eyed husky/wolf/German shepherd, when I’d let him off his leash on the bridle path, he was good, good, good, running along just ahead of me, his head bobbing slightly from side to side as was his husky nature, all happy and free. Then, “I’m gonna take off this way,” he’d say, turn left, and head off down a side street dead ending perpendicular to the bridle path. I remember so clearly that day nearly 30 years ago in Palos Verdes Estates, California, when, with no car sense, he ran right out into the traffic of a heavily traveled two lane road that wound up the hill. I could only stand there alone, with my heart in my mouth, watching him as he pranced, heedless and carefree, among the front and rear bumpers of 40-mile-an-hour cars coming around the bend. By the grace of the dog goddesses and alert drivers, he made it through safely. But until that moment, all I could do was stand there and watch.

I sat up all night with Emma, giving her dose after dose of Haldol every hour, watching at her bedside.

–To be continued …

–Samantha Mozart

January 28, 2011.

Scene: Me on hands and knees tugging my soapbox out of the back of our deep closet under the staircase. I stand and turn.

Me: Oh, it’s you!

Oscar Wilde: I cannot deny it.

Me: Oscar. I am so glad to see you!

Oscar Wilde: Your soapbox could use some polishing.

Me: Yes. It’s gotten rickety from overuse. But I have read and friends have told me about distressing circumstances occurring among the aging that I feel require an audience. I must compose some words on this subject. Will you be my muse?

Oscar Wilde: OK.

Oscar Wilde: You are putting words into my mouth: “Most certainly. Why, I’d be delighted!” would be more appropriate to my manner of speech than “OK.”

Me: OK.

Oscar Wilde: How is beautiful Emma? I do hope her frantic behavior has calmed.

Me: Yes, it has. Thank you for asking. Her doctor gave a new order for a different drug – Haldol: I call it the Hallelujah drug – and that immediately subdued her symptoms. Well, it zonked her. She is more relaxed now, limp, really. She eats well, but in between she sleeps comfortably.

Me (standing on my refurbished soapbox): Now, here is a link to Delia Ephron’s January 27 New York Times story about what the banks are doing to all of us, not merely the aging. I think they try to make us think we are senile. Who cannot relate to what she says in her Op-Ed column: http://www.nytimes.com/2012/01/28/opinion/banks-taketh-but-dont-giveth.html?_r=1&hp ?

Delia Ephron, you know, wrote Hanging Up, about how only one of three sisters is willing to care for their aging father; the other two are too busy.

The aging want to be independent, understandably, so they live alone. Many are becoming senile, or demented, and as early as in their 60s. No one may notice the emerging signs of dementia; I certainly did not; though I do now, having experienced with Emma the ensuing events effected by those early symptoms.

While some children of the aging may see these developing signs, they do not live nearby, so while they may vaguely think that their aging parent needs help or needs to enter a nursing home, these thoughts languish unattended.

A friend told me a story the other day of a local woman who went without heat over a weekend of below freezing temperatures and high winds; moreover, she had no food in her house. Heating oil delivery personnel were alerted that she needed oil but would not deliver it on a weekend. The woman should have been aware that she could phone someone – even the police, to get help. But she just piled on the blankets. I’m surprised the pipes in her home didn’t freeze and she wasn’t found frozen to death. Our house was cold and drafty that weekend even with the thermostat set at 69 degrees Fahrenheit.

Others I have heard about with dementia live alone and employ healthcare agencies. But, what happens when the healthcare personnel don’t show up? I have undergone this predicament many times with Emma – no one calls, no one shows up: I call them – from my soapbox; that’s partly how it got so rickety. They don’t like hearing from me from that stance. Emma has me to look out for her in this manner, fortunately, for I have spent countless hours chasing after these people, whom once pinned down, flail their unwieldy tongues in singsong descending pitch spinning their behavior to blame me, with the preface, “Well, now, Samantha, you know and I know and we both know, as well, as I’ve told you before, that …” – fill in anything here: “It’s your responsibility to call us every day to see if we have someone available,” whatever.

Alarmingly, as the extensive baby boomer generation comes of senile age, who will care for them? Their children’s and grandchildren’s generations (the all-about-me generations) are smaller; your family won’t and your friends will all be dead. Susan Jacoby writes about these and related impending plights in her 2011 book Never Say Die: The Myths and Marketing of the New Old Age.

More imminent, what can be done to identify the early signs of dementia and Alzheimer’s and to prevent these debilitating conditions? On the Charlie Rose Brain Series 2, Dr. Eric Kandel (a Nobel laureate, Professor at Columbia University and a Howard Hughes Medical Investigator) said that 30 to 40 percent of people over age 80 will have some form of Alzheimer’s disease, and into the 90s, more. As the population ages, this is becoming an epidemic. Imagine (while you still possess that mental capacity). We’re living longer; most of us won’t die at 46, like Oscar Wilde.

Oscar Wilde: Yes, but you do see that I have returned. Of course, one of the signs of dementia is seeing people who apparently are not physically present.

Me: All the more important that we channel our mental faculties now to recognize our urgent need for increased Alzheimer’s research funding.

 –Samantha Mozart

Tuesday, January 24, 2012 – The rain stopped last night. I went out and sat on my front porch. The night was dark. A wild wind wrestled with the limbs in the tops of the tall Norway spruces across the street and dried the brick sidewalks. Chimes hanging from porch eaves up and down the way jangled like angels chattering, tittering, anticipating. A dog proclaimed in a choppy bark from a backyard somewhere: “Let me in. Let me in. Let me in right now.” A very large, dark bird of prey appeared, flew in a small circle and perched on the low wire just in front of me.  It was an owl. I was honored by the visit.

I would like to tell you that I said “Hello, Owl” and about our enlightening conversation, but I won’t, because we didn’t speak. The owl remained silent, observant; I heard its mate calling “Who-oot, who-oot, hoot,” several blocks to the south. I gazed at the owl. I couldn’t see its eyes, only its head turning … turning, turning. It was too dark to see its colors. It flew away.

I saw a shooting star from my bedroom window in the middle of the night last Wednesday when I couldn’t sleep. I lay in bed and saw what appeared to be airplane landing lights low in the west through the bare walnut and mulberry branches beyond. I got up and squinted at the sky through the rippled glass. The light didn’t move. It was clear, bright and steady. It was a planet, probably, Saturn or Jupiter. Then, nearby, I saw a shooting star. Each time I see a shooting star, rarely, thankfully, I lose a friend – not necessarily by death; they’re just gone.

Our Hospice chaplain and our music therapist visited on separate days during the week. They said Emma is traveling. I believe so, too. When they are here, I observe that her travel is smooth – she seems relaxed, even smiles, albeit with her eyes shut.

Dr. Patel visited Friday. He said Emma is not ready to leave yet: she continues to eat. He advised not getting her out of bed, for she is so weak and frail, weighs about 65 pounds, that she could easily get hurt.

Emma was quiet during his visit, sleeping. She had just relaxed from another agitation bout that lasted all day Thursday until after around one o’clock Friday morning. When she is agitated, she is amazingly strong. I become tense when Emma does. She became tense Wednesday; maybe that’s why I didn’t sleep Wednesday night. We are mother and daughter, after all; apparently connected by physical nuances. I have to watch for that – what’s up with me may be up with her, too. My aides and I observed Emma closely from Wednesday into Thursday. Thursday morning she exhibited beginning signs of agitation, so I gave her a dose of Atavan. Her agitation continued all day; therefore, as prescribed, I gave her Atavan every four hours, the last at twelve thirty Friday morning when her symptoms subsided and she fell asleep.

These agitation events affect me deeply, psychically. This surprises me. I thought I could just deal with it, however stressfully, as I had with Emma’s erratic behavior – “I’ll be under the bed,” our teacup poodle, Jetta, would say – in her middle stages of dementia: the difficulty in toileting her and dressing her, her occasionally sitting and staring at her dinner, her telling me she’d have me fired, my frustration and exhaustion; but this is different. I felt comforted Thursday, however, knowing it was a weekday and our regular Hospice team was on duty, and that Tess, our nurse, was coming. Early that afternoon, Tess called: “I can’t make it today,” she said. “One of the nurses is out and they’ve sent me to see her patients.” I don’t know what happens. I simply lose it; I dumped everything on Tess through the phone. You may recall my mentioning previously (XXVII. The Horn Section) that Tess is Mother Teresa. She listened patiently, said she understood and that we’d discuss the situation Monday, her next scheduled visit.

Emma, meanwhile, said she was glad to be back, that she had been visiting her family (the cousins she grew up with) and that they were going to put her to work. “They’re a good bunch,” she added. Then she said, “Where are my dogs?”, the toy poodles she raised. “They need to have their food.” I told her they’re not here right now. She said, “I want to get out of here,” and got herself out of her pajama bottoms and diaper. I have neither the strength nor the leverage to turn her in her bed from side to side to change her clothing. I covered her with her blankets and we waited two hours for the aide to come at her scheduled time.

The evening aide came – I shall call her Daphne –, changed Emma and fed her dinner, and when she left, Emma was still agitated. I don’t know how she would have been without the Atavan. Previously, her agitation events occurred once a week, on weekends. But, this was an added event, midweek. After Daphne left, I sat outside on the porch for a few minutes. I felt distressed. “I have no one to call,” I thought. I can’t just call up a friend and whine at Emma’s every crisis. Friends have their crises to whine about, too.

I thought of the little things that mean so much to me these days: a fellow blogger commenting on my blog and when I commented on her blog, her placing a pingback link for her readers to my blog; my friend R’s and others’ comments on my blog post (XLVII. For Whom the Bottle Tolls). I find this heartening. I sat on the porch and thought about that. All at once, everything got quiet – not a bird, nor squirrel, nor car, nor kids running in the street, nor wind. Nothing. And suddenly, everything dropped away: I was totally and completely alone, alone with myself in a pure, clear space. What to do with this? Accept and adapt. I did. After a few moments, I came back into the house and a caring friend called. She knew somehow. She said that.

Part of my distress arises from having to call our Hospice agency off hours for help and getting an argument from on-call nurses and administrators who talk over me without listening.

When Dr. Patel comes, for me it is like meeting an oasis of the mind, as I have said. He is intelligent, interested, and uses common sense. Friday I told him about my seeing a shooting star and that every time I do, I lose a friend. “Close the curtain, pull the shade,” he told me. You laugh. So did he. I laughed, too. A practical remedy. Wise. I believe the Universe is mirthful. It cushions the ride.

Emma became agitated again this afternoon. She threw off her covers and shot bolt upright in bed. I gave her some Atavan. To my delight, a Hospice aide was here, the first Hospice healthcare agent to witness Emma’s agitation. The aide became anxious. I asked the aide to immediately call Hospice and inform them. She did so. “She keeps sitting up, trying to get out,” she told them. “I’ve never seen her like this. She was always so calm.” They contacted Dr. Patel who said to give Emma another dose of Atavan and to administer it every two hours, rather than every four, as needed. That second dose calmed her. How is she now, as I finish writing this at five o’clock? I don’t want to look. But, I must. She is lying in her bed with her eyes open – hopefully not ready to leap. I am perched nearby, watching. I can’t say I find this terribly amusing, though.

A Message from Emma: Daphne came to feed Emma dinner and prepare her for the night. Emma said to her, “I haven’t eaten all day. I’m hungry. I’m a vegetarian.” (She was in her earlier life.) Then she reached forward and took Daphne’s two hands in hers, pulled one of them to her and proceeded to try to bite her index finger. Daphne wanted to say, “Well, that would be pretty meaty,” but thought better of it. Emma asked, “Where’s Samantha? I’m hungry.” When Daphne told her I was cooking dinner and that it was almost ready, Emma said, “Tell her to bring coffee, too.” Then, later, Emma wanted candy. We brought her a piece from a box my good friend had brought to our Christmas party as a hostess gift. “I don’t like that,” said Emma. I knew better. It’s superb candy. “I only want half,” said Emma. She ate the whole piece and was ready for more. She still hasn’t calmed down, not at nine o’clock tonight. I’m hoping. I continue to give her the Atavan every two hours. She continues to throw off her covers and talk. Daphne has left, but sincerely offered to return if need be. I am comforted. All I can say is, I’d rather be on my end than Emma’s. It must be awful for her.

–Samantha Mozart

January 18, 2012 — My friend R, a movie buff, who can recite every line in Bette Davis’s Now Voyager – often using specific lines against any youthful age I might imagine myself to be –, emailed me that the late Anthony Minghella as a writer “lays in events” as precursors of things to come. He said Minghella used in his movies a transition technique, a “pre-lapping” of sound or image to move to almost every new scene. R gave the example of The Talented Mr. Ripley, where “with Tom Ripley looking on bells tolling – as the bells continue to toll, ringing into a new scene the following day with Ripley spying from a terrace onto an al fresco café … introducing a sense of the incoming scene before the outgoing scene ends. I love this: leading with sound,” said R.

Two days ago I downloaded a digitally recorded album, that my father led me into, of Oriental-sounding music of British composer Albert W. Ketèlbey (1875-1959) – picturesque, exotic pieces such as “In a Persian Market,” “In the Mystic Land of Egypt,” “In a Monastery Garden,” and “Bells Across the Meadows.” Those of us of a certain age who know this music remember mystically their fathers’ playing it on 78 and 33 1/3 rpm recordings. The music is transporting.

This morning I experienced the ringing of my phone across the tolling of my dropping a large, empty wine bottle into the bottom of my recycle bin: “What’s that sound? Oh. The phone.” Kellie, my daughter, was calling. This event mashup transported me to idyllic days of our guzz— sharing bottles of wine. One such memory is that of her pre-wedding party 13 years ago where she, her future mother-in-law, and I stood in the kitchen of Kellie’s 1948 cracker box California home chowing down on corn chips and salsa while so marveling at the richly flavored, velvety Australian Black Opal Cabernet Merlot – so reasonably priced. We opened a second bottle just to confirm our tastes. Good research triangulates, so we opened another. Wise choice Kellie made here in mothers-in-law. I don’t know what the other people at the party were doing. It didn’t seem to matter.

A year or so ago I bought a bottle of red wine that was standing on a liquor store shelf because 1) I found the label art attractive, 2) it was on closeout sale for $4.99, and 3) it was from California, my favorite place for wine, among other things. As a precursor to happily anticipated events, I bore the corkscrew into the cork. It crumbled. I tried a strainer; then a funnel seated in a strainer. I poured the wine from one glass to another, through a strainer. Why didn’t I keep cheesecloth around? Determined to drink this California wine with the artistic label I had bought on sale, and with no one watching, I did. It was O.K., not the best, but I figured if I drank enough I wouldn’t mind so much picking the cork crumbs out of my teeth. I have a friend who not only brings her own wine to my parties but also pulls her own corkscrew out of her pocket. Another friend says, “Honey, if I want to drink the wine, and I don’t have a corkscrew, I’ll find a way to open it.” I’m comforted; I am not the only one determined to drink that bottle of wine, liberally garnished with crumbled cork or whatever.

This morning while humming “In a Monastery Garden” and visualizing their wine cellar, I read the latest post of my favorite blog, Lame Adventures (http://lameadvertures.wordpress.com). She unearthed from her cupboard a 1996 Celebrity Cellars Bob Dylan Collector’s Edition One Reserve red table wine from Manteca, California. She and a friend cracked it open; that is to say, the cork crumbled. Using their ingenuity, including having a backup bottle of wine on hand, she and her friend employed various methods to filter out the cork crumbs, including a cone-shaped coffee filter. Figuring that filtering through a coffee filter would have taken them until next Christmas, they hit upon an ingenious how-to: a flour sifter. Therefore, as a precursor to enjoying your next vintage bottle of wine, let me recommend storing in your wine cellar a flour sifter.

The party my friend brought her bottle of wine to – René Barbier’s Catalunya, a delightful Mediterranean white – was my Christmas party. (I had a backup bottle of Catalunya on hand, because I know it is my friend’s favorite – not that she would drink that much, we agreed.) Our health care aide insisted on getting Emma up and dressed for the party. Emma loved parties and loved to host. And so the aide got her up and dressed in red. Although she said nothing, but only smiled, Emma enjoyed the party, seated at the head of the table and later when she started to list in her dining chair, in the wheelchair, then finally to her hospital bed in the back of the living room and to sleep, where after most of the guests had left, five of us sat and talked for another hour. I believe Emma enjoyed it all. The guests, spiritual teachers, nurses and artists, enjoyed her, too. (We didn’t give her any wine, as far as I know, but the guests were amazed at how much she ate that night. That is because the party was a potluck (and bring your own wine), and Emma always eats like she hasn’t eaten in months when it’s not my cooking.)

After New Year’s, another friend came by for an afternoon, and we enjoyed the rest of my first friend’s bottle of Catalunya and some cheese with the Keebler butter crackers my friend had brought to the party.

My party was on December 17. That was one of the last times Emma was out of bed. After that, she got too weak to stand up or to even sit up in a chair without listing or tilting forward, and has experienced intermittent bouts of agitation. My two aides overlapped a few days ago and together they managed to get Emma into her wheelchair, tilt the backrest and shampoo her hair, in the living room, using a footbath tub and glasses of water to rinse. Had I known they were going to proceed in the living room, I would have had them use rug shampoo. But, really, the aides were neat and thorough.

I have reviewed my early chapters here, starting in May, and I am amazed at Emma’s steep decline. In those May days, I was still chasing her around the house. Our Hospice team is astute about documenting Emma’s decline; for if she shows no decline, Medicare won’t cover the Hospice service. The decline isn’t as immediately noticeable when you’re in the middle of it: it’s like raising children – you’re always there raising them and then all of a sudden they’re grown up and gone. Then you’re drinking wine with them and they’re getting married and now you’ve got grandchildren who text you on their iPhones.

–Samantha Mozart, January 18, 2012

Many questions I have had for the doctor have arisen in my mind over the course of the seven weeks since I have last seen him. But in the sequence of changes in Emma’s condition and the subsequent eroding winds of self-serving health care agents, vassals of castles in the sand, my questions have flown from my mind like dry leaves carried down a rushing stream. The one question remaining hangs on the limb on which I presently stand. Then the wind blows, the bough breaks, and we settle on the next situation, the next question.

When the last leaves had gone off the dogwood tree outside my upstairs studio window at the end of November, I had to look farther away for trees changing with the season. Sometimes as I’d walk past my upstairs window, I’d glimpse this big, brown shaggy thing a few doors down. It is a bald cypress, a deciduous conifer, and it is historic, at least 100 years old. It is very tall, rising above the roof of the three story Victorian house it shades, and lush with graceful branches and green needles in the summer. It houses a peaceful community of critters—squirrels, birds, and who knows whom else. When I walk beneath it, its fragrance intoxicates me and I hear a menagerie of twittering and chattering from deep inside its branches. So much busyness, so many lives, so many stories to tell. The first late November I saw the bald cypress turn brown, I thought, Oh, my God, it’s dying. The needles have all fallen off now; its branches are bald. But, thankfully, it is only resting.

Often I dwell in the gap between the wine red of compassion and the sapphire blue of surrender, the darkest, deepest region of love, as defined by Nobel-prize winning author Orhan Pamuk in his novel The Museum of Innocence.

When I write, I live inside my head; my imagination rises to the fore. Readers ask Orhan Pamuk if the story he writes in The Museum of Innocence is about him. It is fiction, he tells the questioners, yet part of him wants the reader to believe that the protagonist, Kemal, is indeed he. My sister, Kathleen Long, has written a new novel titled Chasing Rainbows. Currently it sits in Amazon’s top 100. The story is fiction. She writes about our father. I write about my mother. (We have different mothers.) Daddy died suddenly in 2004. As I write this, I wear his sweater.

Carl Sagan said nothing ever leaves the universe. My friends Jean and Thumper who own the historic Delaware Bay oyster schooner, the Maggie S. Myers, and work her nearly daily dredging on the bay, once took a deceased waterman’s ashes out onto the bay to be scattered. It was a windy day. As Jean scattered the ashes, they blew back into her face and hair. “He was closer to me in death than he ever was in life,” quipped Jean.

When I walked our late teacup poodle, Jetta, along sidewalks piled with dry leaves, sometimes one would blow up into her face—thack. She tolerated being led through these heaps of leaves, because she was with me and because she couldn’t get away; however, she seemed to indicate that it would be more sensible to walk elsewhere.

Caught up in a vortex, a large dry leaf circles back and blows in my face.

In 1973 I sit at my round oak table in Redondo Beach, California, one night listening to the distant sounds of the surf breaking on the shore, drinking wine and staring into the flame of my magic candle held in the neck of a small, dark wine bottle with thick, multi-colored wax drippings down its shoulders and flanks, set in the middle of the table. I feel melancholy.

The next morning I go to class and sit next to my friend, Robert M. We are taking notes, listening to the instructor. Robert draws something in his notebook and hands it over to me. It is a picture of a candle with a gloomy cloud above it. I am blown away. I wrote poems, typed them up and compiled them into a little book. Robert wants to see them. I lend him the book. He keeps it overnight. He returns it and says, “I read your poetry and fell in love with you.”

Robert is an artist; focused on spiritual evolution. He is living with a girl and I am living with a guy, but when we meet for class we are very close. He is concerned that if he marries this girl that she won’t be able to evolve with him. I sense a big change coming. That August, my uncle, my father’s brother and a second father to me, is diagnosed with colon cancer. He is 61. Too young: he is too young to die; I am too young to lose my uncle. I am devastated. Robert sits beside me day after day and tells me it is my uncle’s time to go: “Let go, let go,” he says. “You must give him clear passage so he can go into the light unobstructed. Let him go in love,” Robert says. I did, but I couldn’t have done it without Robert’s uplifting support and guidance. My uncle passed on; it was December 5 that year, the same date I put our teacup poodle Jetta to sleep this year.

Robert gave me a turquoise ring. It is Navajo, turquoise and silver. The turquoise stone signifies friendship. I wear the ring to this day. I have never taken it off. It won’t come off. Soon after our classes ended and my uncle died, I moved away. I’ve never seen Robert again. His words helped me with the passing of my father and they help me now as I watch Emma lying in her hospital bed, separating from those of us staying on.

–Samantha Mozart, January 12, 2012

I lay upstairs in bed last night listening to the sounds of the house – the clapboard walls, the floorboards, the furniture creaking as they cooled; in the cellar, the oil heater flow control valve clanking as it got stuck and unstuck when the heater turned on. (I made an appointment with a plumber to repair the valve months ago, but he never showed up.) I listen for the sounds of Emma. She is quiet, sleeping peacefully.

Emma experienced another agitation bout over the weekend; I should say we both experienced it. I did not call Hospice: I hesitated because our regular team was off for the weekend, and I did not want to experience another verbal battering as I had the day after Christmas and over New Year’s with the patient care administrator and the on-call nurses. This callous handling of Emma’s and my situation apparently has left me traumatized, because I have not recovered; I feel unsettled still. This weekend I determined it less stressful to me to manage Emma’s agitation myself even if it meant my being up all night and unless she got out of hand than to submit to a potential psyche pitting spew from an on-call staff. During the night and early in the morning, Emma threw off her covers and skewed herself around in bed so that she got her head between the rails on one side of her hospital bed and her legs through the rails on the other side. I dislodged her, straightened her body, pulled up the covers and gave her the Atavan to calm her; after the third dose (one every four hours), she quieted.

In the wake of such events, Emma sleeps for two days. As noted to be normal in our Hospice booklet about the end of life, she sleeps with her mouth open; she appears startlingly like the figure in Edvard Munch’s expressionist painting, “The Scream,” the silent scream. After a while she will close her mouth and sink into an apparent deep sleep. She refuses food and drink during this period. Last evening, Monday, with encouragement, she accepted the delicious potato soup our aide’s mom made. Our aide waved a spoonful under Emma’s nose until Emma opened her mouth. Emma’s blood pressure has been slowly rising over the past month, so when Tess, our nurse, came Monday afternoon, she contacted the doctor and he increased her blood pressure medication to its previous level a few weeks before Thanksgiving.

It is difficult to watch a loved one’s life slowly slipping away, as you may know. We can only hope that they remain comfortable and suffer little; it is hard to know what goes on in the mind of a dementia patient – other than “movie trailers” of seeking lost loves, of being lost and trying to find the subway and the way home. After shopping in town in Philadelphia, we’d board the subway train, ride west under Market Street until the train emerged from the tunnel near Drexel University, up into the light and the elevated rails – where we could look back over the intertwining and separating tracks at the Pennsylvania Railroad 30th Street Station – and then  terminating another few miles west where the Philadelphia city line meets the suburbs, 69th Street Terminal. Maybe it is true, then, that as the last breath leaves our body, we do pass through a tunnel up into the light.

To repeat what I said in an earlier chapter here, my father said to me near the end of his life, “I wonder what it’s like when we die?” “Let me know,” I told him. I don’t believe he has; but, rather, Mother is telling me.

–Samantha Mozart, Tuesday, January 10, 2012