Jan 202012


The Parkinson’s Diaries

By Steven Axelrod



Leaving the Breakers: Escape from Assisted Living


My mother had been diagnosed with Parkinson’s disease ten years ago. Still ambulatory in her late eighties, she was now living in a retirement community in Long Beach, California, on the fifth floor of a beautifully restored hotel from the golden era of Hollywood called The Breakers. The ceiling of the lobby floated twenty feet above the marble floor, with intricately worked plaster panels that put the tin ceilings of Greenwich Village cafes to shame. The peaked red tile of its roofs and turrets lent it a Mission revival feeling, and the top floor restaurant, the Sky Room, earned its name with a spectacular panorama of the harbor, while retaining  a heady whisper of old time movie glamour. The staff was charming and helpful, the suites themselves were spacious and sunny, sparked with period detail in the moldings and baseboards, with high ceilings and water views. The dining room was spacious and congenial, the other residents friendly and patient. You couldn’t ask for a more pleasant and professional assisted living arrangement.

And I hated it, with every fiber of my being.

I hated the way the impeccably courteous, and hard-working staff treated my mother and the other residents as a separate, feeble race, inferior but privileged like hemophiliac dwarf royalty, simultaneously catered to and patronized, deferred to and dismissed. I hated the smell in the hallways, some tragic perfume of disinfectant and decay – the sense, so much like the sense you get in a hospital, of a world where human volition and dignity have been sacrificed to the mechanisms of medical technology and routine.

I also hated the dining hall food, tasteless and generic as if the management actually calibrated how many of the residents had no working taste-buds left and arranged the meal preparations accordingly. I hated the weak coffee and the fuzzy sausages, and the cardboard pancakes, the sense that the particular texture of life, the look and feel and taste of things, didn’t really matter any more.

Most of all I hated the resignation of the people there, their palpable sense of loneliness and abandonment, the heartbreaking schedule of activities posted in the elevator (Exercise classes at noon, crafts at three, casino night on Thursdays), and the veil of stigma that seemed to hang over the lives shuffling across the frayed carpets of the upstairs corridors like the smog on the harbor: to be there was to be forgotten, warehoused, left behind and abandoned. Behind each stoical face there was the piercing awareness of a family prosperous enough to install an older relative in such a luxurious setting, and yet unwilling to include them in the daily life of the family.

It felt claustrophobic and unnatural, as perhaps an orphanage might feel at the other end of both life and affluence. For millions of years, in every country on earth, from the Stone Age to the Middle Ages to probably just before the Industrial Revolution, the older members of a family lived with the other generations, offering guidance and receiving help, passing on oral history and family secrets and recipes and folk medicine and being eased out of life among their children and their children’s children. This lovely place was most of all unnatural, inhumane in its segregation of the aged.

It is cruel and mean-spirited to exile our parents and grandparents to such a place, where they are surrounded only by cheerful servants and other old people and a smattering of younger residents crippled with life shattering diseases like Multiple Sclerosis. It’s a world of decay and extinction. It wears you down, makes you feel half-dead already, padding through an upholstered necropolis infinitely removed from a daughter’s embrace or a home-cooked meal. Our elder relatives need us, they need to feel the continuance of life, the noise of rowdy grandchildren, the conversation of adult kids, the excitement of dogs, the easy welcome of people who love them.

And we need them, that’s what we forget in the busy rush of our over-scheduled lives. We need their shrewd intelligence and their hard-won experience and the connection they create to our own childhoods. We need to be part of the end of their lives just as we needed them to guide us through the beginning of our own. It’s a simple circle, the real circle of life, and it feels like we’ve broken it, ruptured it, for nothing more than convenience. Or perhaps it’s something worse and more insidious – the denial of our own mortality, the cowardly glance away just as we avoid the mirror, pondering the competing claims of botox and the ‘lifestyle lift’.

Three days in Long Beach, wandering the husk of that old hotel, so long past its glory days, as forlorn as its inhabitants, sitting in the empty bar where Clark Gable and Greta Garbo had once eaten caviar and toasted the New Year, inventorying the unused walkers, and the coffee dispensers on the sideboard, made all of this uncompromisingly clear, both to me and to my brother. When my mother said she wanted to get out of there, that she wanted to divide her years between our two families and spend whatever time she had left with people she loved, with people who loved her and missed her and wanted to be with her, we scarcely had to discuss it. We just breathed a sigh of relief, grabbed each other for a group hug, and started planning her escape.

The logistics will be tricky – commuting twice a year between Nantucket and Australia won’t be easy, but none of that matters.

Only one thing matters to any of us right now:

My mother is coming home.



The Prodigal Mother


Well, I did it.

My mother is back on Nantucket, ensconced in a new bed in our re-arranged dining room, settling in.

I’m happy, but I have to admit that my first response is to feel daunted and a little overwhelmed. Seeing my mother in the assisted living home, and later on in the depressing skilled nursing facility, it was easy to say, “I’m busting her out of this place.” And in fact, it was fairly easy: just a matter of booking plane flights and hotel rooms and moving vans and boat reservations; buying suitcases and boxes and GPS units; and doing one long day worth of manual labor, broken up over four days of beach jaunts, restaurant meals and movies – almost a vacation. It was enjoyable working with my son, and we paced ourselves expertly. True the apocalyptic California sky – harsh cloudless blue tinged with forest fire smoke – made us uneasy, the streets of downtown long beach resembled a some police state utopia in a bad science fiction movie, with cops everywhere (I saw one of them harassing an elderly gentleman waiting for a bus, as if he were a vagrant: “What are you doing here? Where are you heading? What’s your plan?”), and bizarre street signs posting a ten O’clock curfew for anyone under eighteen and forbidding a new crime called ‘cruising’, defined as driving by any spot in the city more than three times in four hours. But we ignored all that. We had a job to do and we did it.

The journey east was relatively easy, also, it turns out that there’s a use for all that politically correct, handicapped-friendly, wheelchair-accessible infrastructure. If you’re actually in a wheel chair, it makes life startlingly easy. A local clothing store had to install a wheel-chair elevator a few years ago after a fire, to meet our draconian building codes. It’s never been used. It always seemed absurd to me, before (especially since the second floor sells work clothes). But I’m starting to get the point. In fact, I may just walk my mother down there in her wheel chair, to give that elevator its maiden voyage.

Our flight was delayed by a tropical storm pushing up the North-East coast, so we wound up spending the night in the Logan Airport Hilton. The comfortable beds and flat-screen television  smoothed over the inconvenience, and brought home to me with some force the very different world that rich people inhabit. The motel we stayed in during our time in Long Beach was a grim and utilitarian place by comparison. Walking down the dark, cement floored, cinder-block walled passageway to our room, I remarked to my son, “This is like Cabrini Green”. “But with no gang graffiti,” he pointed out. We were grateful for small favors. For my mother and me, the Hilton was our last mooring: now we are launched on this unfamiliar sea.

I’m getting my bearings quickly, though. I knew we would need someone in the house during the day to take care of my mother’s relatively minimal) needs – help getting to the bathroom, and reminders about her medication schedule. In case she needed me in the night, I put my cell on her speed dial. She had to go to the bathroom at 11:00, 1:30, 3:45 and 4:30.

To call this grueling sleepless night a ‘wake up call’ seems both too obvious and wholly inadequate (there were four of them, after all). So now I know we need two shifts, if I’m going to be able to work and stay healthy while this adventure proceeds. The whole routine felt strangely familiar, and then thought occurred to me that this situation is in many ways like caring for a baby. You feel the same stress (Am I fucking this up?) the same lack of experience (You know people have done it before but it doesn’t seem that way), the same constriction of your life: any activity that leaves the person in your care alone has to be planned and organized well in advance. Life suddenly requires a lot more thought, as someone else’s needs take precedence over your own. Of course, the ‘baby’ in this case is a brilliant, entertaining and charming woman to whom I own an incalculable debt, which makes the comparison seem petty and petulant. But it maintains traction, anyway.

I’ve spent the morning interviewing potential helpers, making initial doctor’s appointments and trying to get someone to fix our dryer — swamped with details, trying to keep track of first impressions and phone numbers, while my mother chatted with the applicants for the job. She was very frank with them and she said something a few minutes ago that helped put the whole process in perspective:

“I’m happier here than I’ve been in weeks – in months. Years maybe, I don’t know. It’s just so good to be home.”

Well, that’s the point, that’s was why we did it, and that’s makes the whole trip worthwhile.



Settling In


This is not a story anyone wants to hear. It violates the basic tenets of American optimism. It’s not Norman Rockwell picture; more like an Andrew Wyeth, with occasional torn fragments of Edvard Munch and Francis Bacon pasted over the canvas.

“How is it going?” everyone asks. And of course I say fine.

“Is it tough having your mother living in the house?” And I say no, of course not. Even to her.

Especially to her.

But the facts remain. That’s what facts do. There’s a mindless obstinacy about them. My mother is eighty-eight years old. She has a rapidly advancing case of Parkinson’s disease. She wants to go to the lovely assisted living place nearby, but she can’t really take care of herself, so I don’t see how that could happen. She works hard to improve her physical condition but the odds and the years are against her. Mortality mocks her optimism. Mortality mocks and diminishes everything. Its ruinous taint, the sheer poison of its proximity created every religion and philosophy on the planet. We forget that because we avoid it like the contaminating radioactive isotope that it is.

Shunning death may be the one authentic human instinct beside the ability to suck. We come into life ready to take sustenance from the nipple, hardwired to travel forward ignoring the end of the trip. We build a culture based on youth, we shun the old, we spend a billion dollars on cosmetics and plastic surgery just to keep mortality at bay. I do it. I didn’t know I was doing it until my mother moved in and the awesome, appalling specter of mortality moved in with her.

So how does it feel to change your mother’s Depends undergarment? How does it feel to walk her from the bed to the bathroom, watching her legs tremble as she tries to find her balance? Well, first of all, it’s exhausting. It’s an illness itself, this new awareness of death looming everywhere, a leeching ailment like mononucleosis that saps the life out of your muscles and buries you in your bed. The fatigue is too complex to fight, and only certain parts of it can be solved by sleep. It’s spiritual as well as physical, emotional as well as mental. Part of it is about seeing someone you love so stricken, the penetrating unnaturalness (or so it seems, or so it feels) of your reversed positions, the upended role you have to play in the endgame of a parent’s life. In a way it’s like having a new baby in the house, without the sustaining thrill of a new life to protect. The needs are startlingly similar, but the joy is replaced with sorrow and dread.

Of course I know I’m lucky in many ways. Things could be much worse. We have help during the week. And my mother is as sharp as ever, reading The New York Times and The New Yorker magazine from cover to cover, commenting on the news (“In this country we have Socialism for the rich and free market capitalism for everyone else….”), dismissing her Doctors (“When you’re past a certain age, they just don’t care any more….”). She still loves life and her spirit is ferocious. Watching her do her physical exercises has shamed me into getting back into shape myself. She’s still herself, and she loves being here. She feels like she’s been sprung from prison. She used the term ‘evacuated’ the other day, as if we had plucked her from the midst of some natural disaster when we took her out of the “skilled nursing facility” where she had been living after a urinary tract infection almost killed her.

My wife Annie is a huge help. Of course that has its downside also. My mother said something the other day about being so grateful to me and my brother. I pointed out that some significant portion of that gratitude should be directed toward the one person in this situation who isn’t related to her. It’s an immense unfair burden for Annie, who provided hospice home care, spelled only by her two sisters, for the last six months of her mother’s life. The sight of a walker or a wheelchair, a bath seat or a bedside commode, brings back the most painful memories of her life, and that’s only part of the problem. My son is living with us now also, and he has dubbed the tiny, 200-year old apartment (five rooms and two baths on two floors connected by a  narrow stairway) the NoPrivacyHouse. The name made Annie smile, and she needed a light moment, but it’s another fact and it remains just like all the others: we have no privacy at all any more. Annie feels dislocated and displaced. The small comfortable life we had cobbled together for ourselves is gone. The disruption is temporary, but with no end in sight, some future restoration of our old routines seems far too abstract for comfort.

For now this is our life. It’s constricted, as the lungs constrict during an asthma attack. It’s hard to breathe, impossible to relax. I found myself resting in a customer’s house for half an hour yesterday, just lying down in the quiet room, beyond the reach of obligation, feeling the vibrations of stress shiver out of my nerves like a struck piano string, wobbling to silence.

I needed that, but I couldn’t afford it. I need to work that job and I need to finish it. I can’t afford this new flimsiness, this swooning lack of energy. That’s scary. And my brother, to whom my mother feels such gratitude, is living five thousand miles away in another country, and generously sending an extra $300 a month to help out.  That just about covers a week’s groceries in the most expensive town in America. Thanks for the gumball, Mickey.

So money is tight and living is tight; everything is tight, inside and out. A lot is happening just inside me, weird climate change in my frontal cortex and my limbic system. I feel simultaneously a wild howling sexual desire, the need to throw orgasms at death the way a kid might egg the factory owner’s house on Halloween. And at the same time a scrim of age and decay seems to cover both of us, making the whole idea feel creepy and repellent. The two feelings cancel each other out and nothing happens, which works well for us since sex is the last thing on Annie’s mind right now and we live in NoPrivacyHouse anyway.

So it’s grim and debilitating and the strange dark secret of it all is that I feel absurdly blessed and lucky to have this time with my mother, whatever the cost and however long the ordeal goes on. Because make no mistake, it is an ordeal and I can’t wait for it to be over and I hope it lasts and lasts, until I finally get enough of my mother to really remember her by, because soon enough the remembering will be all I have and I dread that day and I all have is the time until that day to prepare for it.

So we push forward, easing her end, taking the flickers of rest or pleasure when they present themselves, and hold her and hold each other and somehow make the best of it.

Maybe it could be a Norman Rockwell painting, after all.



Animating the Map


I spent half an hour this morning helping my mother put on her bathrobe.

The goal was to get her bundled up and across the ten feet from her bed to the kitchen table for breakfast. Like some hapless, out-numbered platoon trying to retake some anonymous numbered hill in Korea, ultimately we failed. We managed to get the robe on, with me bracing her trembling legs and holding her up from the back while we searched for the second arm hole – the second arm hole is the killer,  elusive and maddening, always too high and too far back, so it seems as if she will have to dislocate her shoulder to fit her hand in. Suddenly in the closing hours of your life, you have to be a circus contortionist simply to get dressed. Still, we did it. But we couldn’t get to the dining room table because her legs simply couldn’t support her weight this morning. It’s particularly upsetting because she seemed to be making so much progress over the last week. Sometimes the physical therapy and occupational therapy and the exercises seem like nothing more than worry beads,  a soothing distraction, a way to keep body and mind occupied before the next onslaught of the disease. Because when it happens, when the storm surge arrives, all the sand-bagging and levee building amounts to nothing, swept away by the greater force of an illness no one understands, not even the doctors.

We finally got my mother into her ‘Cadillac’ walker – it doubles as an ad hoc wheel chair, and  we  maneuvered her to the dining room table where she ate cereal and drank coffee and talked the situation over. I remain awestruck by the tenacious ability of the human brain to accept an ever-narrowing world and inhabit it, accepting an ever shrinking set of goals and small victories. My mother had hoped to start up her communications consulting business here, and go shopping, and move into the lovely assisted living home on Main Street. Now she takes it as a satisfying and hard won triumph when she can walk on her own to the bathroom late at night. I admire the stoicism with which she adapts to this contraction, but entering the claustrophobic world of her illness, living there with her even as an outside observer, takes a grim toll. It’s exhausting and frightening. At first I thought it was loosening and uprooting the structural supports of my own existence, but I realize now that I was mistaken. Instead, it’s revealing the structural supports of my existence, placing the realities of my life and life itself under the raw and unforgiving fluorescent lighting of mortal truth. It’s my illusions that have been torn up, strewn about the ground: the illusion of immortality, the illusion of the ever-nurturing mother, the illusion of a benevolent universe. I’m going to die as she is dying; I have to nurture her now and the universe, God-controlled or the product of random chance, really doesn’t care at all. The result is I feel old myself, inches not miles from my mother’s precipice, caught up and tangled in the same sticky web of decay and disorder.

It makes you understand how delayed stress disorders happen. During a car crash, or a wartime trauma, things happen too quickly to grasp the nature of the event. But here it’s all occurring in slow motion. You can feel yourself shoving your emotions aside, stamping them down, packing them like boxes into an overstuffed closet. You can feel the effect of looking down and pushing forward with each day, the stress building up like a toxin coating the nerve endings. It will take years to cleanse the blood of this sorrow, and it may never happen. I may not have enough time.

As a caretaker, the erosion of your world happens on so many levels at once – that’s what’s hard to grasp from the outside. Your time is shredded, days starting later and ending sooner and trimmed from the middle with new obligations. This means that money becomes an issue and even though the thought of a nursing home draining away a life’s savings feels grim and Dickensian, some fist inside me clenches and says “better her than me” I cannot go bankrupt here. I have to work. That’s not a debate point, it’s a fact. Having no choice simplifies decision-making. But I’m exhausted and that slows work down, also. I have no private time now; Annie and I have no time together except for a stolen cup of coffee or a brief talk in the car, parked in the driveway. I’m writing this as the visiting nurse works with my mother, tapping a few stolen sentences into the computer between consultations and conversations. The emotional wear and tear combines with my mundane practical worries and the inexorable presence of death, the grinning skull suddenly pushing out of the surface of everything, and the sadness and the pity, and the stupid childish anger and the guilt over that anger to create a separate disability that folds over and magnifies the effects of its own symptoms. It reminds me of baking bread, folding over the dough and kneading it, watching it double in bulk under a checked cloth on a warm window sill.

But no one wants to eat this loaf. No one.

My mother was in the hospital for a couple of weeks after a bad fall in the bathroom and we got the house back and dismantled her bed and tried to live normally. But of course life revolved around the hospital and we knew it was just the eye of the hurricane. The next storm wall was coming. I log onto Weather Underground a lot these days – the weather has taken on some mysterious new urgency. I see the blob but I have no idea what it means for me until I click on the ‘animate map’ button. Then I can see which way the weather is moving, caught in a half hour loop. I relax: it’s heading Northeast of us, despite the fact that the official forecast calls for rain. I need to click that same tab in my own life, in my mother’s condition. I see the blob, the angry yellow and orange of a harsh Nor’Easter. But what does it mean? Is this a brief setback, or just another bump in a bumpy road. Does it signify the beginning of the end, or is it the prelude to a miraculous resurgence? I have no way to tell.

But I take comfort in small things.

When I found my mother on the bathroom floor that morning three weeks ago, and helped her to her feet, both of us thought it was all over.

She hugged me and said. “We had fun, didn’t we? Nobody had more fun than us.”

It was true. Some days, some part of each day, it’s still true.

So we hang on and hope for more of them.

There’s nothing else we can do.



Surreal Life


It looks like my mother is going to have to move in to the nursing home. We just can’t do what needs to be done any more. Every day we are faced with our own ineptitude and clumsiness and ignorance. I can read to her from Tim O’Brien and make her cry, I can tell stupid jokes and make her laugh. But I can’t adjust medications and do physical therapy and take care of her around the clock.

So I spend my days now trying to find cards I don’t recognize with information I don’t know so that people I’ve never seen can fill out forms I know nothing about … all to get my mother into a facility where none of us wants her to be in the first place.

It’s Kafka-esque. Kafka would actually be amused by this situation. He couldn’t read The Hunger Artist to his friends without cracking up. Meanwhile I feel like my entire nervous system is being peeled one layer at a time like an onion and someone seems to have attached lead weights to all my joints. I  can’t even read at night any more: my eyelids secrete glue. The centrifuge of illness and misery sends the separate parts of my life flying in all directions. Some neurologist I’ve never met changes my mother’s medication and sends her into a tail-spin and he acts irritated when I call him up in a panic, after office hours. He’s not the doctor of record. “But you’re the neurologist,” I say, and I’m thinking, they haven’t passed tort reform yet, you miserable prick.

Meanwhile, my mother’s head floats above the dining room table, the spitting image of a younger self, and we discuss the nature of confidence and the rules of grammar and the failures of the president (“I have only one question for him: When are you going to end the war?”) and she instructs me in the best way to dredge the scallops (seasoned bread crumbs and white corn meal after a quick dip in the milk and egg mix). Then she stands up and her legs won’t hold her and all her features pull down in pain and she’s unrecognizable and I can’t adjust.

I’m changing my mother’s diaper and she has no modesty left and takes it in good humor, and she has no idea of the shock wave it sends through my nervous system, like  gunshot wound, the sonic boom pulverizing the soft tissue ahead of the bullet. Why is this so disturbing? It should feel natural, tending to the flesh of a parent, as she tended to mine and I tended to my own children and they will tend to me. And yet every fiber of every nerve screams in protest.

But even that is changing. The most surreal part of the experience is that I’m actually getting used to it. I woke up this morning early (Annie had to catch a 6:30 boat). When I came downstairs my mother was on the floor by the bed. She had slipped down. Her robe and pajamas were wet; so was the bedding. After a split second flinch response and a sort of snap clenching, of the spirit (time to wake all the way up, buddy!), I performed some internal recalibration and saw the scene as a set of logistical problems to be solved: get her off the floor, seated on the walker, into the bathroom; then change the bed, get the laundry in, find new pajamas, get her off the toilet, get her dressed, cheer her up, tuck her in … and make coffee for us. Annie’s alarm was set for five, and she was just getting up when I finished. So I’ve crossed a strange new rubicon now, into a twilight world where finding my my mother on the floor and fixing the nighttime mess just feels like another part of my day, a mundane routine like walking the dog or brushing my teeth: the new normal.

Still, bizarre things keep happening. After days of being unable to stand, my mother woke up in the middle of the night last week, certain she was all alone in the grand foyer of the Metropolitan Museum of Art, in our old neighborhood in Manhattan. She made her way to the top of the grand stairway and then decided she had to get outside to hail a cab. She walked across the whole downstairs of my little house, looking for a way out of the museum – I know this because I left my sneakers near the front door and she was wearing them when I found her: giant Reeboks on her tiny feet. She almost got the basement door open (that actual narrow stairway would have killed her) before she woke up enough to realize that she was at home. How did she do that? The basement door is hard for healthy young people to open. And why aren’t we figuring out some way to harness the over-riding power of that dream in her waking life?

I don’t know. No one knows. She can’t taste food but she loves to eat, she can’t move but she can tour the house in a dream. The people who know how to help her don’t seem overly interested and the people who care the most are helpless. Life is upside down but I’m getting used to walking on the ceiling, skirting the light fixtures and high- stepping the door jambs.

I haven’t been arrested for no reason, as Kafka described in The Trial. I haven’t been turned into an enormous roach and neither has my mother. I’m not spending my days trying to penetrate the faceless bureaucracy of The Castle—though it all sounds a little too familiar. I’m not living in Kafka’s world.

 But I’m starting to understand it.



The Fire in the Barrens


My mother called me from inside her dream last night.

It wasn’t a psychic experience; she used her cell phone.

My own phone started ringing in the middle of the night. I lurched out of bed, panicked and disoriented. A call in those deep-sleep hours before dawn usually comes from the hospital, the police station or the morgue. This one came from the Pine Barrens in New Jersey, where my mother’s dream was happening.

“I need you to make some calls for me,” she said. She sounded strong and alert. I almost never hear that crisp diction and easy authority in her voice anymore, when she’s awake. It reminded me of my mother twenty years ago – a vibrant seventy-year-old with a busy schedule and a lot on her mind. The ninety-year-old Parkinson’s patient, fading away in the local nursing home?

No sign of her.

“What phone calls, Mom?” I managed. “It’s like two in the morning.”

“Well, I suppose you should call the film office first.”

“The film office?”

“Well, Frank seems to have disappeared and they might know where he’s gone or how to get in touch with him.”

“Frank? Who’s Frank?”

“Oh, sorry. He’s supposed to be handling the extras, keeping track of us, getting the porta-potties here. supplying us with water and snacks, making sure we’re on location when the director needs us. All that kind of thing.”

“Okay, hold on a second. Where are you exactly right now?”

“I’m sure we talked about this. I’m in the Pine Barrens. They’re making the holocaust movie and they had to do a controlled burn for this big sequence they’re shooting. But that’s what I’m worried about. This forest is a tinder box and I think the fire may be going wild. One of the extras is already suffering from smoke inhalation and another one – a very nice man – seems to have fainted. We’re doing our best to take care of them but really it’s Frank’s job and he’s nowhere to be found.”

Now I was fully awake. I was getting interested.

“Tell me about the movie,” I said.

“Well I’m not sure of the story, no one gets to see the script, but there’s obviously an escape involved, since this whole section is set in the woods. And the director is brilliant. Just brilliant. But also a little unstable. He’s always going off on tangents when he talks. He knows everything about film history, and he’s done his research on the period, but I’m not sure he’s on top of things right now. He’s out of control, Stevie, and no one’s really talking to anyone else. Very bad communications. That’s why I thought I should call you. Someone needs to co-ordinate things here.”

I told her to use the old Bob Hope trick of the mini-nap, so she could get some rest in case she had to do something strenuous later.

“Good idea,” she said, and hung up.

She’s been having these amazingly vivid dreams for several years now. Mostly she can’t remember them, but when she can, it’s very difficult for her to distinguish them from reality. We’ve all had that experience: dreaming a car crash and piecing together reality one fragment at a time after you wake up: I can move my legs, I’m my own bed, not a hospital, it was just a dream. Even so the dread can linger into the morning.

So my question is: what’s going on?

If I was a doctor this would be the total focus of my research. Some broken synapse gets circumvented when she’s asleep. Some short circuit gets corrected. She can walk. She can talk without slurring her words or getting lost in a sentence. It’s the same organic machine, the same bundle of nerves and muscles, but it works when she’s unconscious in ways she can only dream of when she’s awake. Doctors and scientists readily admit they have almost no understanding of brain function. The territory has never been explored and remains as mysterious as the bottom of the ocean or the inside of a Black Hole.

The men who created the electronic chip that ‘rewires’ Parkinson patients’ brains and relieves most of the symptoms have no idea how or why it works. They discovered it by accident. Their genius was following the accident and exploring the ramifications of the unexpected. But they remain basically clueless and their awed humility in the face of these mysteries is both impressive and discouraging.

Something extraordinary is going on in the deep recesses of my mother’s mind, some eccentric nightly miracle, and no one has the faintest idea what it is. I know I can’t figure it out. All I can do it send a tiny plea and a rallying call for the men and women doing brain research and trying to find a cure for Parkinson’s.

The cure was in the Pine Barrens last night.

But the director was out of control.

 —Steven Axelrod


Steven Axelrod holds an MFA in Writing from Vermont College of the Fine Arts and remains a member of the Writers Guild of America (west), despite a long absence from Hollywood. In addition to his frequent contributions to Numéro Cinq, Steven’s work has appeared at Salon.com and The GoodMen Project, and the magazines PulpModern and BigPulp. A father of two, he lives on Nantucket Island.

  10 Responses to “The Parkinson’s Diaries, by Steven Axelrod”

  1. Greetings, Steve, a beautiful piece that mirrors your mother’s world and your perceptions and responses. Nicely compressed and contured…paragraphs that carry you along through the experience.
    Keep on trekking. Forrest

  2. Steven, this series is amazing. Should be required reading for anyone taking care of their parent. It was heartwarming and heartbreaking.

    “Behind each stoical face there was the piercing awareness of a family prosperous enough to install an older relative in such a luxurious setting, and yet unwilling to include them in the daily life of the family.”

    And the picture on top…Just gorgeous

  3. Hey, Steve. NIce writing. I like how outfront it is–about the rawness of the situation, the emotions. The stuff about how the brain and body appears to regain functionality in the the dream state… that’s interesting, spooky… oh yeah, by the way, I was reading a biography of Audrey Hepburn–don’t ask why–and ran into mention of your dad. The film sequence, above, made me remember…. Suddenly, the Axlerod family is everywhere….Great picture of your mom!

  4. Hello Steve, I’m a friend of your brother and he forwarded your piece onto me. It is brilliant and so moving.
    And I agree that this “new, inescapable awareness of death” is “itself like an illness” and shares the delayed emotional reaction of a major illness or personal trajedy. And I found that the illusions that were “torn up and strewn on the ground” were often of oneself, the caregiver. And like a Kafka story, there is no exit, day after day and night after night. My beloved mother passed recently and she was at home, surrounded by her family. It was all worth it and for that I am forever grateful. Again, thanks for opening your head and your heart in your article.

  5. Domenic — Yeah, they were great friends, having made not just Tiffany’s but another film together, called “Paris When it Sizzles” Huge flop, and not much of a movie, 48 years later. I have a great picture somewhere of them hugging on a Paris balcony. That kind of glamour is dangerously alluring. It got me hooked on Hollywood.

  6. Steve, your piece is much appreciated. My grandmother suffers from dementia—a different but still discouraging disease. She moved in with my parents a few years ago and, until now, I don’t think I’ve had any idea of what my mother has been going through. Besides the humanity and truthfulness in this piece, congrats on an essay very well written and a fantastic, fantastic ending.

  7. Liz — you’re my demographic. If you’re not going through this particular ordeal, every human instinct screams ‘procrastinate’ — you don’t want to think about it ( I know I didn’t), and maybe that’s a good thing. As for the ending, it was a kind of gift, an offering: when I got that phone call I knew I had to write it down.

  8. Wow, Steve, this is searing, wrenching, beautiful stuff. Took the top of my head off, the way the depth of your articulation so thoroughly and distinctly illuminates the disaster and love in all you and your family have been going through. Great writing, great heart–my hat is off to you.

  9. This is what we do, care for our elderly so that they always feel at home and safe and loved. Your piece is painfully vulnerable, and, honest, and I thank you for removing rose-colored glasses, and saying what this experience of caring for mother means to you. Oh, difficult and maddening, but necessary to complete the circle of life. Thank you for your sensitive words, your courageous endeavor, your sacrifice.

  10. Steve–sorry we haven’t met, but I was profoundly moved by your series. Your candor in facing all the drudgery, horror, sadness, exhaustion, lack of privacy, and helplessness is wonderful, and your metaphors and similes make those feelings vibrate, alive with the truth. The paradox you mined of the pleasure and gratitude you have for your mother woven with the suffering all of you endure is crucial to life and consciousness. Your description and meditation on her dream celebrates the wonder of the imagination. What a great pleasure that you shared your insights so powerfully.

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