Amarillo Bay — Creative Nonfiction

1.

I don’t know much about being a New York City cab driver, but I imagine that one who’s been around a while has pretty much seen and heard it all. But maybe not this. Maybe not that I am careening up the West Side Highway in one New York City cab, my father in tow, headed for Columbia Presbyterian.

The cabbie is weaving in and out of traffic and accelerating through the yellow lights. My father’s eyes are feral, terrified, as he grips the vinyl strap hanging from the ceiling. He repeatedly yells out, “Son of a bitch! Son of a bitch! Son of a bitch!”

I wonder if I should apologize to the driver, but he stares straight ahead as he maneuvers his deathtrap vehicle. Perhaps he doesn’t even hear the expletives, but I find that hard to believe. I decide to say nothing and try to soothe my dad, but he is beyond any reasoning. And besides, maybe we ARE going to die in this cab.

2.

I like to remember my father the way he was before. Before the corporate restructuring that tore apart his career, before the cardiac bypass surgery, before my mother’s sudden death, before his remarriage and the depression, and the slow inexorable path to dementia and finally death.

He was the most gentle, erudite, handsome man then. He had a full head of silver waves, silver for as long as I can remember. He spoke quietly, and I don’t think he ever yelled at me. He certainly never cursed, and he blushed at even the mention of sex, preferring to let my mother handle all that mess as we became teenagers and young adults.

My father always dressed properly. No jeans or work pants or T-shirts. Always trousers with a crease down the front and a button-down shirt. And a hat. He always had a hat, whether a felt fedora in the winter or a poplin one in the spring and summer. When he drove, he kept his hat on the back seat of the car.

One day, my parents told me, when I was three or four years old, I threw his hat out the window on the highway. I don’t know if it was about the hat at all, or if I just liked to see objects fly behind the car on the wind; apparently I also threw my own shoes out the car window on another occasion.

Perhaps my father should have raised his voice, so I would have learned. But I’m sure he just calmly explained, “Dolly, we’re not supposed to throw these things away. They’re important, and now we can’t get them back.”

That’s what he called me: Doll or Dolly, or Mousela, Yiddish for “little mouse,” and while I now recognize that to be called a doll or a mouse is a diminishment, it was a privilege then to be my father’s little doll.

3.

We arrive at the neurologist’s building, and I guide my father in and up the elevator. The building is a tastefully redecorated old brownstone. We wait. Dad is calm now and carries on a conversation as though the crazy cab ride never happened.

“Thank you for bringing me. You know Dolores wouldn’t like coming here.”

“I wanted to, Daddy. I can help to remember what the neurologist tells us.” As a physician, I would know what it all meant. I would remember, but more importantly, if he spoke ‘medicalese’ to us, I could interpret it.

It turns out that I need to do more than interpret. We are soon shuttled into the consultant’s office. He is clearly used to confused patients and anxious families. He patiently listens as I explain my father’s symptoms, since the patient himself simply shrugs when asked why he is there and points at me.

“Increasing difficulty walking over the past year. Urinary incontinence, but not all the time. Unusual behavior for him, like abdicating just now and having me talk for him. Passivity. Lack of motivation. Saying the same things over and over. But good long term memory — he remembers things from years ago.”

The neurologist asks my father a battery of mental status questions and does a physical exam. He asks him to walk and observes the wide-based and somewhat shuffling gait. He then methodically reviews the brain and spine CT and MRI scans.

Finally he sits back and addresses us both, but he seems to know that I am the one absorbing the details.

“I wish I had better news,” he begins. “I don’t think there is anything reversible. While there are features of Normal Pressure Hydrocephalus, where cerebrospinal fluid builds up in the brain — a condition that can sometimes be improved with a CSF shunt — the overall picture is more consistent with Frontal Lobe Dementia. There is no known treatment for Frontal Lobe Dementia. It will progress. I can’t tell you how fast. It usually starts earlier than Alzheimer’s-type dementia, and it usually progresses faster.”

I glance at my father. He is looking out the window, his eyes focused far along the skyline outside. I have no idea what has registered.

Soon we have thanked the doctor and are out on the street. I ask him to repeat to me what the doctor has told us. He shrugs again, and says, “I don’t know.” This is how the end begins.

4.

Five years after my mother died suddenly, my father remarried. In retrospect, his choice of a partner may have been a clue to the beginning of his mental deterioration, though at the time, I chose to look at it as a breath of fresh air for him.

My mother had been a brilliant and complicated woman. She had many talents and cared deeply about her family as well as her career as a clinical psychologist. But she was also mercurial; the marriage was not always peaceful.

Dolores was everything my mother was not — at sixty-eight, she was petite and fashionable and eager to please. What she seemed to lack, though, was a strong inner core, and the determination that my mother had embodied.

Dad met Dolores through some old friends, and they apparently hit it off. So my father, at seventy, with his insight maybe not-so-intact, married Dolores, who my friends and I quickly began to refer to as ’Delirious.’ There were many red flags. Delirious had bad relationships with her adult children. In fact, they avoided talking to her at all. She was a helpless little thing, unable to cook a meal or shop for groceries on her own, though she was happy to drive. This worked well, as my Dad was losing his confidence in the car, but was still able to negotiate the Pathmark aisles, and was willing to take Dolores out to eat as much as she wanted. The first several years of their marriage seemed, at least, serene.

Dolores had virtually no interest in her new husband’s children or grandchildren at that time. It was when my father started to have gait difficulties and show some behavioral oddities that Delirious suddenly started calling me and my brother. She reported that she found my father sitting idly staring into space. He refused to go on vacations with her because of the walking involved.

As he deteriorated, she proved a completely unsuitable caretaker for him. She believed he was “faking” or “embellishing” to avoid going away with her. She objected to his use of a walker, though he was clearly at risk of falling. She didn’t want to go with him to his doctors’ appointments, leaving him to sort out, in his increasingly confused mind, what the doctors had said.

But it wasn’t until the day she found him watching porn on the TV that she decided she’d had it.

My brother and I were in Chicago at a family wedding when I got the call.

Dolores was screaming on the phone, “I’m putting your father on a plane to Michigan. He doesn’t touch me, but he watches that smut! I’m not going to have that in my home.”

I held my cell phone out from my ear so that my brother could hear. He was the one who lived in Michigan and also the one who was distinctly unprepared to care for our ailing father. Why Dolores thought that was any kind of solution is still a mystery. Even the idea of putting him alone on a plane from New Jersey to Michigan was idiocy.

“Dolores!” I had to yell even louder than her to interrupt her rant. “We are in Chicago. Nobody is home in Michigan to get Dad. You also can’t send him alone anywhere on a plane!”

“Well, what do you want me to do with him, then?” she demanded. Then she started sobbing, howling really.

“Dolores! Stop it!” I yelled. “He doesn’t even know he’s watching porn! Just change the channel!”

She continued howling.

“Fine, I will be back from Chicago tomorrow, and I will come from Philadelphia to get him and bring him to my house.”

She stopped howling and sniffed.

“Fine.”

“Okay. I’ll call you later,” I told her.

I didn’t get Dad the next day or the day after that or the day after that. Delirious settled down and in fact seemed to forget about the porn incident. So he stayed, but not for long. Within a few months, he called and begged for me to take him somewhere where he could be safe and have help. She refused to go with him. He left, first for my house and then a “suitable situation,” and she declined to visit. He didn’t seem to mind.

5.

At the Continuing Care Community, he is a sought-after ladies’ man. Within this cocoon of assistance he can live in an ’independent’ apartment. There is laundry service and shopping assistance. There are escorted outings to restaurants and theater, exercise classes and art classes and religious services right in the building, and most importantly, full dinner in the dining room nightly.

“The women are like vultures,” Dad tells me on the phone. “One is angry at me for sitting with another at dinner last night!”

I am not surprised. He is still terribly handsome, and with all the other people around and the support of the staff, it is difficult to tell that there is anything more wrong than just some difficulty walking. There are many single women there, but most of the men are married, their wives living in the facility as well. My father says nothing to the women who seek him out about being married; I wonder if he himself has forgotten. No matter, I think, as he is not planning on marrying again. In fact, he really has little interest in the women or anything else. He lets them lead him around as he does the staff at the facility, so he initially remains occupied.

I see the spiral down, though. At first he goes to PT, Friday Evening Services, current events and the weekly grocery shopping trip, as well as an occasional orchestra concert. But after a few months, he stops leaving the facility unless I take him grocery shopping or out to eat. And then I hear from the staff that he has stopped PT and Current Events too.

I have meetings with the staff. He is struggling with his Activities of Daily Living. I hire an aide to come in to help him dress and straighten up the apartment. I have long ago taken over doing his bills and correspondence. Someone comes to his door to remind him to attend dinner each night.

And then there is the hospitalization. He has had short spells of congestive heart failure, always managed before as an outpatient. But now he is short of breath and the usual measures don’t correct it. He is admitted to the hospital. This time it is not only his heart; half of his diaphragm has suddenly become paralyzed for no clear reason.

He stays in the hospital for two weeks until his breathing improves. He returns to the Continuing Care Community, but now he is too weak to live in the “Independent Unit.” He is moved to the “Care Center.” It is a nursing home. This is supposed to be temporary, but in fact, he will never return to his apartment. The Care Center is the final stop.

6.

He loved beet borscht with sour cream and hard boiled eggs and kasha with bowties, all the foods from the old country — Moldova — from where his parents had come, immigrating not to Ellis Island, but up the St. Lawrence into Canada, across the country via the Trans Canadian Railway, and then homesteading in Saskatchewan. Siberia to Siberia, he would joke. His parents never learned English and never assimilated, and those Russian-Jewish foods were comfort, even for my Canadian-born, US-educated father.

Dad, of course, spoke perfect English, with only an occasional Canadian ‘Eh’, and once in a while a Yiddish colloquialism to give away his origins. The orthodox religious rituals of his parents had gone by the wayside. He ate his pizza with pepperoni on top.

As a naturalized American citizen, my father feared authority a bit. Even though the McCarthy era had ended ten years earlier, when we were young children in the 60’s, he told us not to talk about eating borscht when we were outside our home, lest anyone know of the Russian connection.

One other thing about Dad — he had a sweet tooth (which he passed on to me). We always had dessert when I was growing up — Sara Lee pound cake, or Entenmann’s iced walnut Danish, or maybe, on a special evening, schnecken from the Jewish deli, the ones with raisins and lots of cinnamon sugar. And like me, he appreciated a good chocolate bar.

7.

Ultimately, I kill him with a chocolate bar well after it seemed to me it was time. I don’t really think that’s a bad way to die, enjoying something you love in the process.

He sits in his lounge chair, disheveled, shirt off, tousled hair, oxygen tubing on one cheek, giving air to the air. It is the evening before Tax Day, and the one when Passover ends at dusk, and it happens to be Easter Sunday, a day when his one-to-one aide is off, explaining the state he is in. The nursing staff has no time for combing hair or finding discarded clothes.

I have arrived alone. My eleven-year-old son usually visits with me, but he has too much homework. Before I leave the house, however, he reminded me to get the jumbo Hershey Bar that we bring once a week. Dad usually nurses it along during the week.

I give him the chocolate bar when I arrive, and he eats it all immediately. I almost stop him, but then think, Why? Why can’t he enjoy this without someone telling him it’s not good for him? What is good for him at this point, anyway?

I tell him the taxes are done. Even in his confused state, he is relieved. His fear of the government had never really gone away. I also tell him Passover is ending, and he seems happy he can go back to eating bread instead of Matzoh.

8.

I wake to the phone ringing early the next morning. My father is dead, but all I say to the nurse is “Are you sure?” Because I’m not. Did the chocolate really clog that last coronary artery? Is it really possible for someone to be there one evening but not the next morning?

When my father comes to me in dreams afterward, he is not dead. He is in a hospital or a nursing home. I have neglected him, thinking he was dead. That nurse had been wrong.

9.

Almost fifteen years later, I watch my friends with their fragile parents. Ancient people, wizened, withered, frail. Wheelchairs and walkers, falls, family emergencies. And I am free, well done with that. But I am also alone, other, an orphan. I was so much younger than all these friends when I lost my parents. This is not my struggle now.

After my Dad’s death, I repeated the words “I have no parents” to myself, trying them on like a new dress, but rejecting them over and over. Perhaps it really wasn’t new: in some ways I’d been orphaned for several years, since the diagnosis of Frontal Lobe Dementia, and I’d just been waiting all that time for this more tangible moment of void. I didn’t feel sad for a long time. I just felt numb.

I suppose it is this way for many caretakers of the chronically or terminally ill. As much pain as the loved one’s illness inflicts, the annihilation of that pain becomes the hole in our lives that was filled before with schedule changes for doctor visits, career subordinated to this animal call to step in where we are needed, the infinite care of children pushed gently aside in favor of this finite task.

“It’s a blessing,” we might say, when they finally go. And it is: my father had been gripped by some kind of terrible pain at the end, a pain he could not locate or characterize. It could have been a physical pain that the doctors didn’t understand, or perhaps it was caused by the loss of his dignity, or by pure fear. That pain was gone, and he was peaceful in his non-breathing, non-heart-beating state.

Yet, despite the rituals around death, which in Judaism are there to both comfort and to help us accept, I didn’t let go of my role as the doted-on baby girl-child for years, transferring it first to my marriage, as I let my husband comfort me as one would a child, and then to my oldest male cousin, allowing him to make any major decisions for the larger family, in a patriarchal role.

When I finally did accept my place in the next living generation, I did it with a sense of disbelief, as I still do. And I realized how much I missed the man who raised me, the man my father was ’before.’

I finally understand that we never truly recover from the loss of our parents. We forge ahead, knowing that someday, if we are lucky, we will leave this same legacy to our own children, much as we live to deny it.

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