Father’s Day

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Guest blog by Peregrine Honig

 

The nursing home where my father stays sent out an email announcing someone would be singing songs to patients for mother’s day. I agree to the five dollar fee- all money going to some charity- and ask for an exception to his gender. I request Porgy and Bess, a song he loves and would explain the story behind the words to when I was a little girl. I receive an email later in the week that he was delighted, singing along with the visiting songstress.

My patchwork of a family includes people I would choose as friends. My stepfather has been a gentle hand on my back throughout this sad season, helping move my biological father into a nursing home when the record of his mind fell to pieces. My half sisters are now more than whole and closer than we ever expected to be. My husband is a loving confidant, the people I collaborate with creatively are incredible. The needle dropped and we fell into the groove of a crappy concert where my father’s Alzheimer’s arrived as an unwelcome and never ending guest.

I ask my father about the singing telegram I sent him when I visit. He smiles and tells me the song I picked. The nurses confirm the experience from behind their Big Gulp and doughnut box puppet stand (is this bitchy?).  It’s downhill from here. Because my father wants to go home. He has convinced himself his roommate is going to kill him in his sleep with the belongings he has hidden in his closet. He has jammed the closet door, told his gentle roommate whose wife visits daily that she is never coming to see him again. He asks me when my stepmother is going to pick him up every two minutes and goes to the bathroom as often. “I didn’t do anything wrong,” he states. It’s true. He just can’t do anything right. His behavior is a loop and within this loop is an album of so many broken songs.

 

Jordan Stories

 In 2009 my father Jordan Honig was diagnosed with early-onset Alzheimer’s disease. In the years since, his perception of reality, and his recollection of the past, have blurred into a bizarre mixture of memories both true and imagined. Today he exists somewhere between the realms of waking-life and dreamland.

To connect and reminisce, perhaps to make sense of his segmented reality, Jordan constantly tells stories from his past. By leveraging slivers of true events, layered on by thick coats of exaggeration, he shares about how he met my mother, the summer he spent in Israel, the old 1960 Dodge Lancer he owned 20 years ago, and a stew of other oddly disjointed tales that have no root whatsoever in this world. Like a poet embellishing the normal, transforming his everyday life into an absurd and colorful circus, Jordan’s stories are lively and revealing; in his versions, stormy weather becomes a tsunami, deceitful friends are murderers and in the end he is always the hero.

Sometimes Jordan’s tales are dark and disturbing. Other times, sweet and enlightening. Regardless of their content, my sisters and I encourage them. As strange and fictitious as they may be, his stories have become a sort of demarcation for us—an indication as to where he stands in the progress of his decay and exactly how deep his psychosis has taken him.

For Sysnapses, I decided it was necessary to share his stories with readers. But rather than describe them through my own writing, I felt the only way for others to experience them would be via recording. The way he fumbles for the right words, and speaks with an unbreakable sincerity, are details I could not begin to convey on paper. After recording two interviews and editing down the audio, my sister Peregrine Honig generously agreed to collaborate with me. In a tedious process, she lovingly created hundreds of illustrations, and together we curated a stop motion film. Eg Schempf assisted with lighting and equipment. What resulted is a short animation that is as coherent and methodical as its narrative.   Enjoy.

Birthday

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This piece was contributed by my sister Peregrine Honig

My stepmother and I bring a birthday cake to my father’s adult daycare. We had already picked up a few presents – a wind-up tin train and a plastic cow-hide printed cup that acts as a cheap blender for a single serving of chocolate milk. In a previous life, my father’s contrary cafe behavior was amplified by his order- a mocha. We still indulge ourselves in the memory of his indulgences. Pistachio ice cream, carrot cake. My stepmother washes and dries his white handkerchiefs. We remind him that these are a few of his favorite things.

The main space where my father spends his days smells like a hotel and feels like an airport. The residents are watching Karate Kid when we arrive. Movie popcorn is portioned off in paper cups on a tray by the front door. It’s 2:15 in the afternoon. Brenda, one of the resident nurses, explains that this is movie night and so we have to wait until the show is over. Consistency has proven to subdue anxiety- the woman who holds the doll and Charlotte who is usually too sad to be social are both in attendance. My father is the youngest person in the audience by decades and he would believe this movie had started or was over anywhere in the film. Following this realization I terrify myself by wondering if I will plunge into cinematic darkness and only have the knowledge I have gathered so far. Two days later in my studio this thought restrikes me and I will sit on my knees and press my forehead to the ground and my tears will taste like water gathered from deep in my body.

My stepmother and I go for a walk to kill time. When we return, we wait until the final match is over. We put candles on my father’s cake but none of the nurses smoke and besides, they mumble, fire is probably against hazmat regulations. I introduce myself and my stepmother and announce the occasion to the room. We sing happy birthday before my father blows out his unlit candles. He sings along and I wonder if he remembers what a wish is.

Giving Care

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The week before Thanksgiving and I’m home with my father making him an omelet for his Sunday breakfast. The yokes smear and sizzle on the Teflon frying pan. My mother, who would usually be the one scrambling these eggs, is in Santa Fe, New Mexico visiting family and taking a well-deserved vacation. While she’s away for the next three days, I’ve stepped in to take care of my father.

The day starts out simple enough. I wake my dad up at around 10am and rouse him from his tomb of blankets. Just like my mother instructed me, I asked Jordan to take a shower and while he’s in the bathroom I lay out a clean outfit for him—otherwise he’ll forget to change his clothes from yesterday.

I give him his meds and serve him a simple meal of scrambled eggs, toast and fruit. He eats passively. For a man who was once adamant about fresh ingredients and skilled preparation, meals have translated into an empty stream of calories. He finishes his plate in silence and goes promptly back to bed where he’ll remain for the rest of the day.

If it were still a reasonable ordeal to travel with him, my mother would have done so. However, Jordan’s Alzheimer’s is so advanced that he now requires constant care and unfamiliar settings make him uncomfortable. Furthermore, it’s important that my mother, as his primary caretaker, have time away to relax.

Giving Care

The irony of Alzheimer’s is that the diagnosed individual is often times oblivious to their own circumstances—instead it’s their caretakers who suffer. According to a study by Ohio State University, the chronic stress that spouses develop while caring for Alzheimer’s patients may shorten the caregivers’ lives by as much as four to eight years.

Since his diagnosis five years ago, my father’s mental capacity has continued to wither and the stress on my mother has increased exponentially. In addition to working a fulltime job that barely covers the cost of my father’s care, she must manage their finances, maintain their failing real-estate investment and manage her and my father’s lives and surmounting medical issues.

According to the Alzheimer’s Association, in 2012, 15.4 million caregivers like my mom provided more than 17.5 billion hours of unpaid care. Due to the physical and emotional toll, those caretakers had $9.1 billion in additional healthcare costs of their own last year.

After raising two children and holding down a begrudged career for the past 30 years, I had always hoped my mom would find rest and happiness in her retirement. Unfortunately, she has been the primary earner for our house for the past nine years and the circumstances are such that not only is she still working fulltime at age 63, but her savings and sanity will, no doubt, be absorbed by my father’s illness.

 

A wall of photos my father keeps to remind him of his past.

A wall of old family photos that my father has tacked up to remind him of his past.

Caring Back

While I’m caring for my father, my chores and responsibilities fall into a routine and the whole experience takes on an odd sense of familiarity. When I wake up early to drive my father across town to his adult daycare program I think of the many hours he must have spent driving me as a child to ballet class; When I cook him breakfast I think of how he cooked me French toast each and every morning for years; And when I remind him to wear his jacket before he steps outside, I shake my head as I’m sure most parents do at the heedless behavior of their children.

There’s an old adage that says: As we get older our parents become our children. And while that moment has arrived earlier for me than most, I’m certain that the parent-kin role reversal is a jarring experience at any age. To maintain a graceful disposition I try and keep things in perspective–my father looked out for me when I was coming into this world, I can do the same as he is on his way out.

StoryCorps: An Interview With Alzheimer’s

StoryCorps is an independent non-profit that pops up allover the country to record and document the stories and lives of people from all backgrounds and beliefs.

They actually have a category specifically for Alzheimer’s and Memory loss. There are several wonderful interviews of family members who have, or are currently dealing with a loved one affected by Alzheimer’s. There is even an interview that features  a young women whose mother has early-on-set, like my dad.

Here are several of my favorite pieces, it reminds me that conversations with Alzheimer’s patients are at times the most surreal interactions.

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“What’s your life like now, Dad?”

Priya Morganstern and Bhavani Jaroff interview their father, Ken Morganstern, who has Alzheimer’s disease.

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“How would you say the diagnosis of your Alzheimer’s has affected us?”

Bob Chew talks to his wife, Jo Ann.
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“My mom was diagnosed with early-onset Alzheimer’s.”

Rebecca Posamentier (R) recorded her first StoryCorps interview in 2008. At the time she was pregnant with her first child. She interviewed her mother, Carol Kirsch (L), who passed away three years later. Rebecca came back to StoryCorps to reflect on that conversation with her mom.

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“Everything about you I think I know…”

Seymour Gottlieb, who has Alzheimer’s disease, and his wife, Marcia, talk about their 60-year relationship.
Audrey Newman (R) talks with her mother, Florence (L) who has Alzheimer’s, about her father, Joe Newman.
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“My mother was the glue to our family…”

Gwen Richards remembers her mother, Helen, who had Alzheimer’s.

Sleep Walker: Bex finch

Bex Finch is a photographer based out of Brooklyn, NY who has chosen to document the progression of her father’s early on-set Alzheimer’s. In her series, Sleep Walker Finch reveals a world of isolation and disorientation, reflecting a common and curious phenomena in Alzheimer’s known as Twilighting or Sundowner’s Syndrome.

 

Artist’s Statement: My father was diagnosed with early onset Alzheimer’s disease in December 2007; he was 59. In 2009 I began capturing portraits, both of my father as his disease progresses and of myself coping with the reality of his condition. The Sleepwalker‘s self-portraits are an attempt to understand what he is going through: feeling increasingly lost, directionless, and disconnected from his surroundings, and living with the fact that it will only get worse. Through solitary self-portraits at dawn, I’ve used light as a device to convey the stark separation between myself and my father. I see his frustration with feeling “in the dark,” and in his eyes the struggle to find clarity. I emulate this struggle in my self-portraits, as well as my own desire to make sense of something unfathomable; that is, the loss of personhood. I call the series The Sleepwalker as it seems that that is what my father is becoming — an emotionless individual wandering through space and time, perpetually divorced from life happening around him. I like to think of this series as a legacy to his life, cut short but beautiful all the same. It is very much a work in progress”

-Bex Finch

Sundowning Syndrome 

Also referred to as Twilighting, Sundowning Syndrome is a psychological phenomena affecting those with advanced Alzheimer’s or Dementia.  Patients who experience Sundowning may become restless, temperamental or especially confused during early evening or early morning hours.

Normally, our brains induce sleepiness or wakefulness based on cues of natural light patterns, i.e. sunset and sunrise.  It’s thought that the plaque tangles associated with Alzheimer’s disturbs that circadian rhythm–the brains ability to discern those cues.

THE ZOMBIE APOCALYPSE IS HAPPENING

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Growing up, Zombie movies were the most terrifying of all the horror genres. I watched Night Of The Living Dead more than a couple times and considered 28 Days Later to be the epitomy of a quality terror film.

In the movies, the concept of the living dead is always portrayed to us as a predatory flesh noshing monster. A subhuman creature that crawls through the night, seeking victims and wondering mindlessly, their humanity erased by the incurable, bloodthirsty zombie virus.

But like most Hollywood monsters (witches, werewolves and vampires), these fictitious creatures also have their basis in reality.

Outside the movie theater, the living dead are actually demented senior citizens who can barely chew their oatmeal.

I’ve seen them, on my tour of the “memory ward,” where advanced Alzheimer’s patients are brought to receive 24/7 observation and care. Here, doors to the outside world are locked, residents wear diapers and tracking bracelets and everyone takes a healthy dose of anti-depressants.

In the memory ward, the mental decay stays consistent with that of the physical. Eye sockets and wrist bones gleam through skin, thin like paper. Heads are framed with halos of waspy hair and faces stair vacant and isolated.

Frail old ladies in smudged lipstick search frantically for their dead husbands; patients are strapped into their dinner room chairs so they do not collapse onto their food and nurses stand buy with sedatives should anyone break into hysteria.

Demented senior citizens may not roam the streets for flesh, but their bodies do live on in the absence of their souls.

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A Zombie Awakening

Alzheimer’s has had a surprising effect on my existential thought process. I had long believed that that the soul moves on once the body had ceased to function–I had never considered it might happen the other way around.

For my father, his body is in considerably strong physical condition. He ate healthy and exercised his entire adult life and only now has begun to pack on extra weight. However the person he once was, his true being (that I will argue is his soul) is what’s wasting away.

For me I have always held a steadfast belief in the human spirit; a mysterious spark that brought forth life and personality. But the reality that our bodies can go on existing, breathing, eating and functioning in the absence of that force, has me questioning.

I may never know for certain the existence of the soul, although I’m certain I have seen zombies.

My Father In Sheep’s Clothing

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By Contributing Author Peregrine Honig

Our father has Alzheimer’s. Girlhood delusions helped my youngest sister, Esther believe tutus made her a princess and our father has, like a child, put on a yamaka and turned himself into a rabbi. He has grown his beard out and speaks in pretend Yiddish, substituting words he can’t remember with sephardic syllables. My sisters and I close our eyes when he does his version of a blessing over our meals to avoid looking at one another because it is funny and we shouldn’t laugh.

In my father’s waking memories, all tragedy is cloaked in heroism and all heroes avoid death. His rewrites are visual and elaborate. Our relatives survived the holocaust by hiding in wine barrels. He rescued my stepmother from a sinking ship. There are wolves in the neighborhood and he kept them from stealing a baby. He shows us plastic trinkets and tells us he’s a diamond miner. He is romantic and brave and celebrations and dances are the telltale end of most of his recollections. When I’m in a good mood, I am happy he is happy. When I am tired his spontaneous dancing and bizarre interactions with the public upset me. He is the sheep of my father in sheep’s clothing.

As my father becomes childlike, I am sometimes most saddened by his lack of anger and resistance. A part of me still flinches when I explain his flashlight won’t warm up the television and turn it on. Jordan Honig-the mechanical engineer, patent holder and bossy creative problem solver- nods politely, puts the flashlight down and tells me he’s tired. We all are.

The amazing thing about fear is that it is both private and universal. We scream because we already know what is in the attic. My father’s attic door blew open over nine years ago and I’ve been reading about where his journey might take him since his diagnosis. I hear about people with my father’s disease breaking mirrors because they don’t recognize their own reflection. I listen to the foundation of his recollections fading in and out of an abyss- his face lit by the streetlights sparkling through the rain on the passenger side window. He is tracing  his mustache and reading every license plate as if they were all vanity plates. I can learn to close my eyes and see his ghost now, it won’t be as scary when I open them later.

 

Meet The Rabbi

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Jordan with Shofar and Menorah. Esther Honig

A year ago my father began referring to himself as a Rabbi. Around that same time he started attending a adult day-care program at a Jewish assisted living center.

Like any dedicated scholar of the Jewish faith, my father, Jordan, wakes up each morning and carefully pins his Yamaka atop his head. He refuses to shave and has grown a mess of wiry, grey facial hair. Some days he even mentions that he is keeping kosher and claims to speak Yiddish fluently, leading our family dinners with a mumble of throaty sounds that resemble the Sabbath prayer.

More recently, he has been toting around a Shofar, a ceremonial horn traditionally blown three times during celebration of Rosh Hashanah, the Jewish New Year. However in my father’s “practice” any day has become an occasion to toot his ram’s horn.

This bizarre behavior is not a charade or a midlife identity crisis, but the latest phase in my father’s deepening psychosis.

Caused by the deterioration of the cognitive processes in the brain, delusions and even hallucinations are typical of patients in the later stages of Alzheimer’s. These individuals can become paranoid and obsessed with their misconstructions and begin to hear, feel and see things that are not real. (Alzheimer’s.org)

At the moment my father’s fantasy as the village rabbi is completely harmless and mostly entertaining. As a family, we’ve agreed that trying to reinstate reality is far more difficult than just playing along and we casually refer to him as “the Rabbi”. My sister Manya replaces the hairpins on his Yamaka and we all take turns driving him the hour-long round trip to his daycare center, or what he calls his congregation.

To his credit Jordan is actually Jewish and comes from a long line of hardheaded Ashkenazies. His fabricated role as a Rabbi is a reflection of his crumbling psyche and as I’ve come to understand it- it’s his coping mechanism.

Everyday, Jordan readies his brief case with pens and the local newspaper and sets off with a purpose to what he’s convinced is his “work”. And everyday he imagines himself fulfilling a role that separates him from the other patients at the assisted living center—the zombie-like senior citizens who can no longer feed or clean themselves.

The other morning, after driving “the Rabbi” to daycare, I listened to my mother stress–Jordan’s long commute has become unmanageable and we’ve considered relocating him. “How will I convince him to go to another home” she said. “Maybe I’ll tell him that this new center needs a Rabbi.”

–Sometimes we all create fiction to grant ourselves a little comfort.

Shifting Personalities

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Marty, Jordan and Manya Honig 1987

 

Some of the earliest memories I have of my father are of driving with him back and forth from our home in the Colorado suburbs. He treated these long rides as an educational opportunity and while I stared out the window at the passing scenery of cul-de-sacs and strip malls, he would instruct me on all sorts of random  knowledge; like how birds were perhaps the descendants of dinosaurs or how the Egyptians removed a mummy’s brain with a hook.

 

Outwardly, my father, Jordan Honig, was known for being charismatic, amicable and smart. A former artist turned engineer, with a few successful patents under his belt, he was well-read and a flaming liberal who followed current issues closely. An amazing cook and a true handyman, he had an odd sense of humor that was understood by few, paired with the gusto for striking up conversation with just about anyone.

 

He was the kind of man who befriended neighbors and became a socialite at parties, but within our family, we also knew him for his bad temper and stubbornness. His bad moods followed him for day’s like a heavy overcast and he had a way of making simple arguments explosive; once his anger had built up enough, whether over financial issues, the house or us kids, it typically resulted in him storming off with a gruff “oh fuck you”.

 

but these days, nearly five years after my father’s diagnosis of Alzheimer’s, my sisters, mother and I can only recall his once dynamic personality. He is experiencing what experts describe as a “moderate to severe decline” or stage five of the seven known stages of Alzheimer’s. In just a few years we’ve watched his drastic transformation into a very different person, someone his former-self would have hardly recognized.

 

Alzheimer’s is a degenerative disease that like dementia and Parkinson’s causes the brain to rapidly decay before shutting down entirely. It creeps through the cerebral cortex (gray matter or outermost layer of the brain) in a predictable pattern, killing neurons and causing tissue loss as it goes—over time this actually causes the brain to shrink in size. (Alz.org/brain tour)

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Alzheimer’s spreads through the brain like a virus: NYTIMES

The first region of the brain to suffer damages is often the hippocampus; a small component of the brain shaped like a seahorse that controls short and long-term memory–when my father hit this initial stage, he had trouble recalling mathematical equations, or directions home from the grocery store.

 

Later, as the disease advances it damages the frontal lobe that controls empathy, forward thinking, impulse and inhibition–the other week at the grocery store, I watched Jordan breake-out into a samba-esc song and dance with the shopping cart, letting out a melodic “coco” as he shuffled.

 

Slowly, other regions of the brain are affected, like the Parietal lobe, responsible for understanding time and facial recognition–from what I’ve observed, Jordan is aware that I am one of his daughters, but cannot tell me apart from my two sisters.

 

And finally, towards the very end, the brainstem, responsible for basic functions like swallowing, heart rate, seeing and hearing and sense of balance, also loses its faculty. (brain map)

Personality Changes in People with Alzheimer’s 

As the disease continues advancing, different regions of the brain are compromised. This off-sets the brain’s ability to function properly and directly affects the individual’s personality. Simply put, as more regions of the brain become damaged, the personality becomes more and more distorted.

 

While it varies, classic examples of personality changes include loved ones who were once kind and complacent, but with Alzheimer’s become angry and argumentative.  Or clean and orderly people who begin to neglect their hygiene and become messy.

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Jordan Honig By Esther Honig

In my father’s case, a man who was often grumpy and stubborn- these days- is more likely to break into a smile than an argument. Instead of listening to NPR, he sings along to the easy listening station, and rather than building or fixing anything, he has a hard enough time simply turning the television on and off.

 

And while he no longer shares my reality, living instead in his own delusions, the bad moods and fiery temper that I had come to associate with him have all but subsided. What’s left is a happy, complacent old man. Ironically, it is perhaps the happiest I have ever known him to be.