A woman in love

 

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A woman in love. A woman, 75 or so, who danced at the Luau party in the arms of a stranger for the first time in how many years? A woman who held a place for love in a mind that was fast becoming a hoax, a grim repository of gangsters, monsters, hecklers, forgotten words, lost reactions, and shrunken dioramas of time and place.

Now that I’d heard the confirmation about the man she claimed was her lover, The Bear, I realized I might have to take action.  She revealed the identity of The Bear as the man known as Ilian R. He was a worker, a PAL, in The Neighborhood, the lockdown unit at The Fancy Place in Hollywood. He was 35, background-checked, and a recent staff addition.

In Ilian’s arms, she cooed,  “the world fell away.”

For several weeks, I admit I condoned the love affair. I put lipstick on her thinning lips, rouge on her cheeks. I complimented her on the blouses and outfits she wore. She smiled often and seemed to be tolerating the bland days in The Neighborhood, though she did have a few grudge matches over “cheating at games” and “dirty looks” with a bent-bodied resident who carried a purple unicorn on her walker.

While playing checkers in The Neighborhood, the 30-something daughter of another resident asked me if I thought they were getting good care. I said no, not at all, and that I’d happily share my experience with her. I think her name was Janet. We exchanged numbers, and I told her about my mother’s love affair with Ilian, and my mother’s escape to the freeway, and my mother’s suicidal ideation. I asked Janet to keep an eye out for anything odd while she was visiting her dad in The Neighborhood — and report back.

Janet and I did stay in touch about some crazy shit happening with her dad, a former surgeon, who was very aggressive with the staff, and who was whisked off to a mental hospital for medication adjustment. We talked a few times, and Janet revealed that she was bipolar and therefore less able to make decisions about her dad’s care than was her sister, who was a control freak but not bipolar. She asked me if I thought that was fair. I said I didn’t think it was fair, but I didn’t really have an opinion. I said, I guess it’s better to have siblings than not to have siblings.

I was an only child with an older half-brother who lived with us for three of his teenage years. Most years, all the presents under the tree were for me. My mother loved my brother like a son, and stayed up late into the night rapping with him about the establishment, grass, the sexual revolution, and anti-materialism. When I was seven, he  left for college in the South.

As a result of my one-on-one status, my mother and I played together like sisters for about 17 years. When she wasn’t depressed, we sang together and did puzzles, and read books together. For my tenth birthday, we saw “Hair” on Broadway together.  We often ate grilled cheese sandwiches together, went to playgrounds, art exhibitions at The Met and The Guggenheim together, went sledding on Dog Hill, went ice skating at Wollman Rink, and rode bikes in Central Park together. We confided our deepest secrets in each other, smoked her Winston’s together, and later drank and talked about men together. We cooked fettuccine alfredo and slept in the same bed when my father went on business trips. We traveled together, swam in the Atlantic ocean together, told fibs to my elementary school teachers about my missing homework assignments together, shopped at Bloomingdale’s and did living room “runway” shows together. We sometimes ganged up on my dad for being a chauvinist together, and generally knew that we were each other’s number one.

By the time she was in The Fancy Place, I had Power of Attorney and essentially had to become my mother. I had assumed all responsibility for the person formerly known as Pat. It was a heavy feeling, different from the transformation of footloose to mother of two small children. As daunting as motherhood can be, I felt prepared for it just by being myself and meeting the challenge with love. Even as we signed the papers at the attorney’s office, I resisted becoming my mother. I didn’t feel equipped and it didn’t seem right.  It was as if, while I slept, the planets had surreptitiously shifted their position around the sun.

This latest turn, Pat’s heady love affair, was a tricky one. I had to do what was best for her, for me, and perhaps for other residents who might soon get bussed into The Neighborhood. I learned that elder abuse is a serious accusation. I didn’t want to damage Ilian’s life, especially if he was in some kind of odd but consensual relationship with my mother. I also didn’t want a privileged white woman to accuse a Latinx of a horrible crime he didn’t commit.

I am her story. She is mine.

I remember Tom pointedly asking me whether Pat was still talking about the boyfriend.  His tone was dismissive, unkind.

“We’ve got a problem here,” I said. “I want you to start an investigation today.”

 

 

 

 

 

 

 

 

The Neighborhood Bear

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5. An article in the New York Times about Alzheimer’s patients in facility care talks about the continuing search for love and joy: “Imagine if all the people you know and loved disappeared,’’ said Dr. Richard Powers, chairman of the medical advisory board of the Alzheimer’s Foundation of America. “Wouldn’t you want to find someone who was your friend, who would hold your hand and watch old television shows with you?”

So was the case with my mother, who had no means to express her loneliness, her sorrow, or the conjurings of  her ravaged mind. After weeks of being locked up in The Neighborhood by day and returned to her room upstairs after sundown, we weren’t sure how to receive the news that she had a lover.

“He’s one of the big guys,” she said. “A big, strong one, like a bear,” she cooed. “Like a bear. He picks me up in his arms and the world falls away…”

She offered a physical description that was unwavering. Broad shoulders, tall, dark, younger than she… He was kind, and strong, and they had been having sex, she confirmed, on a regular basis. The first time was “after the Luau party.”

After hearing this story repeated multiple times, I asked the nurses on duty to explain. One gave me the expected response about dementia patients making things up. She said it was “not possible” that Pat could be with someone since she was under constant scrutiny.  She dismissed the story and promised, at my insistence, to see if my mom had any new friends.

I never heard back from this nurse, partly because unless you happened to be available at the end of a particular nurse’s shift, you could not rely on the next one on duty to impart any valuable information.  Not really knowing anything about your parent, the new nurse would say,  “your mother doing everything normal” or she’d offer an unsolicited description of  the day’s toilet habits.

After the fifth or sixth time that my mother told me about her unnamed lover and where he put his hands on her body, I thought it was time to have a serious talk with Tom.

“She’s doing much better in The Neighborhood, by the way. She wrote out all the song lyrics the other day and seems to be making friends.”

“Yeah. What about this guy she talks about incessantly, Tom? Who is this man she’s…with? Which one of the residents?”

“It’s just not possible for our residents to do that sort of thing,” Tom assured me. “I can see if your mom has any particular friendships, but this is not…happening.”

“I don’t mind if my mother is enjoying herself. She has so few pleasures. I just want to know who this is and make sure it’s a safe situation.”

Tom who was efficient and tidy in all things, looked at me with the smirk of someone who had seen this type of fantasy accusation in his five years at the facility. “I’m sure it’s just a nice thought she’s having. But I’ll ask around.”

After several weeks of hearing my mother tell The Lover story  to my children, my husband, the staff,  her tablemates, and Arlene, who cared for her in the evenings, we were very familiar with The Lover. We even knew what his lips looked like when he pursed them for a kiss.

But not everyone knew what happened after the Luau party.

“He had a key to a supply room and he opened the door and we went inside and he told me to be quiet and that’s when we…”

Pat went into some X-rated details that I’ll not repeat here, but I will say that they were disturbing in their specificity. If this were a fabricated tale, she had retained a highly developed imagination for sexual conduct.  Her story lost its innocence. It began to take on a new cast that was not about geriatric lovers at a residential home. More alarming was  that it no longer sounded consensual. Though my mother was not complaining and showed no signs of bruising or distress, the covert nature and location of their encounters, as she described them, sounded strange.

I felt it was urgent to find out the identity of this mystery lover.

In her suite, as she was getting changed for bed, I asked her simply: “Is he Charles? The guy from The Neighborhood that sits near you at lunch?” I asked.

My mother shook her head. “Who?”

“Your friend from downstairs.”

She looked away, disinterested.

“Is this man, your boyfriend, is he someone who works here, mom?”

My mother paused, perhaps deciphering my words. I will never know what lived inside those breaks in conversation.

Then she grinned and nodded her head.

Sundowner’s Revenge

 

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After the escape –-which they call elopement, as if you’ve gone to Vegas to do something sexy or clever with a hot partner by your side—The Place in Hollywood put tight restrictions on the poor girl. She was tried and found guilty behind closed doors in Tom’s third floor office, and the verdict was that she would spend daytime confined to The Neighborhood. After sundowning, an escort would take her back to her room.

For this safety measure we were covertly charged $25 an hour to have an additional “PAL” who took my mother for cigarette breaks and generally kept a watchful eye on her, like an agent for the KGB. This cost was in addition to the $7,000 monthly residential fee, partly paid out by long term care, thanks to my late father’s  forethought.

My mother could barely make a move and was growing increasingly irritated with the new routine that included glop for breakfast, fill-in-the-blank worksheets with song lyrics from another era, word groups and consonant reminders, color-coordinated puzzles, weekly appearances by well-meaning off-key singers belting “Rhinestone Cowboy,” or “This Land is Your Land,” who were accompanied by karaoke-style boxes or acoustic guitars. Time ticked loudly in The Neighborhood, a land of lost personalities, hauntings, and stick figures.

I got to know one of her neighbors, Charles, a tall, broad-shouldered, soft-spoken former History professor, originally from Oklahoma, whose Mr. Rodgers’ smile and cardigan sweater made him feel like a safe bet for a table partner. We had a few elliptical conversations about his family and his grown children. It was always hard to tell if folks with dementia really knew their own stories, so I learned to go with whatever they provided.

“My mother’s an actress,” I told him, as we put some oversized pieces in a puzzle. “She did a lot of New York theatre.”

Charles nodded. He’d been to New York. My mother listened, waiting for a cue to speak.

“Do you like the theatre, Charles?” I asked.

Charles looked away, maybe distracted by a woman stamping her foot and shaking a plush bear at one of the aides. Or maybe he had a thought, an actual yearning or desire that was not fully formed.

After a long pause. “I like your mother,” Charles said, smiling.

“Me, too.”

During my visits to Tom’s office, I played my mother’s attorney, therapist, healthcare proxy, financial manager, social worker, mediator, best friend, and daughter. I asked for an adjustment to her meds, to manage the lost  hours of weeping. The mobile doctor prescribed Seroquel, a controversial benzo, used to treat schizophrenia, that has a black box warning but can also be helpful in some cases. I wasn’t a fan of the meds, but the truth is the doctors are at a loss. They got nothing. There’s no cure. Everyone knows it, so they try different things to alleviate symptoms. Despondency is a symptom. Hallucinations are a symptom. Aggression is a symptom. Memory loss is a symptom.

In Tom’s tidy office, I asked for leniency for her crime. Yes, Pat pled guilty to setting off fire alarms in the middle of the night, bothering another resident by banging on the walls with a Mason Pearson hairbrush, and attempting a daring escape that ended in a dramatic, LAPD rescue.  I asked Tom if, despite her trespasses, she could stay upstairs in her suite, where she could hear classical music or jazz in place of the insect buzzer, or eat ice cream for breakfast if she chose to. I promised there would be no more incidents and pleaded to end her sentence in The Neighborhood. She’s not ready for the lockdown ward, I said.

“I know it’s hard to accept that Mom’s in a new stage of the disease,” Tom said, “But we’re trying to keep her safe. The Neighborhood’s the best place for that.”

This was not what I wanted to hear. “Didn’t you say there was something that happened down there that you wanted to talk about?”

Tom ignored the phone ringing on his desk, and the distant sound of quiet wailing in the hallway. “She’s been sundowning. That’s the hour of the day when –“

“I know what sundowning is. They wander, they moan, they’re disoriented because they’re on a different clock.”

“That’s right,” said Tom. “She was sundowning and something may have upset her—she’s been having some issues with one of the other residents –  and, well,  your mom threw a tray at one of the aides.”

I nodded. I must admit, I wanted to applaud.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Welcome to the Neighborhood

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4.

She arrived at The Place in the back of the squad car and was taken, not to her room, but to the lockdown facility known in assisted living parlance as “the more advanced wing.” Each facility she went to had a euphemism for the same type of secured ward. I won’t forget the piercing buzzer sound, the sound of confinement, of prisons, of institutions, of punishment, of loss.

This time she landed in The Neighborhood.

The aides were bigger, more robust than the ones on the upper residential floors. Maybe their muscles had been developed by lifting the dead weight of the male patients, whose once hard bodies had atrophied. Maybe they ate more to combat job-related anxiety.  Maybe they seemed larger in my mind.

The Neighborhood, a 1600-square-foot psyche ward with an enclosed cement patio, located below the first floor lobby, was a dull, sanitized place, a place of compliance, of rules, of suffering, of time-outs and no funny business. There were dormitory style rooms for about 20 residents, with grey tiled floors and crunchy, synthetic bed pillows. There was a main dining area where meals were served on bright orange trays. There were tubs of stuffed animals, oversized playing cards, plastic puzzle pieces and sing-a-long lyrics.  People carried plush toys like appendages—bears, mice, shamrocks and unicorns—on their slumped shoulders and backs, or fastened to wheelchairs or three-legged walkers.

There were women whose silence, whose stillness, whose absence was as harrowing as their distant expressions.

And there was my mother,  center stage, in her stocking feet, baggy brushed corduroy pants, and crew neck sweater, pacing the floor, lipstick wiped clean, running her hand through her dark hair, muttering to herself about the dilemma of existence.

“Sit down, Mama, sit down,” said one of the aides, whose sweet voice could barely be heard above the groaning and shifting and pained exhalations of the residents. She was talking to my mother, who did not want to sit or to stand or to be.

I would later learn that she told a mobile physician  hours before the escape that she wanted to “slash her wrists.”

No one called to inform me that my mother was suicidal or having suicidal ideation. No one called to say we are now punishing her for trying to elope by holding her in the lockdown  ward with the high-pitched insect buzzer sound in place of a doorbell. No one said, she’s here with the people who are in an advanced stage of dementia,  a stage your mother will eventually reach — so take a good long look, if you dare — but hasn’t just yet.

When I arrived at The Neighborhood, it was story and cookie hour. The aide was reading to a group of inert women, some of whom had their floppy heads down on cookie trays. I was reminded of the nights my mother read to me with her actressy voice the verses from A.A. Milne:

                                           the king asked the queen and the queen asked the dairymaid, could                                             we have some butter for the Royal slice of bread?

 I was glad she’d been found, glad she was still alive, but nervous to approach her.

“Get me out of this fucking hellhole,” she yelled. “They’re trying to kill me.”

I spoke with one of the nurses, who was busy administering plastic cups filled with pop-colored meds. She said in a neutral tone that my mother had been uncooperative all afternoon. She said others were complaining about my mother. She said Tom, the director of the facility, wanted to speak with me.

I told her I was taking my mother to her suite upstairs. I told them she wasn’t spending the night in The Neighborhood. As I said that, my eyes landed on an older male resident who had opened his blue velvet bathrobe and was masturbating while watching Anderson Cooper on CNN.

I got my mother’s things, her broken heel and a few key items, and went upstairs in the elevator.

When the doors closed, a smile came across my mother’s tired face. She looked at me defiantly and tried to light a cigarette.

“You can’t smoke in the elevator,” I told her.

“Really,” she said. “What can you do around here?”

Return to Assisted Living

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What is it to think you have a purpose, a mission, a plan?  What is it to have none?

She had successfully completed a daring escape that looked, on first glance, like nothing more miraculous than a woman of a certain age, privilege and stature moving on her dancer’s legs past the desk of the assisted living facility and walking the miles of concrete sidewalks that lead to the freeway entrance.

What is it to be rooted in time and place?   What is it to be untethered but alive?

An assault. The cars like speeding warriors, the sliver of shoulder on which to rest or change direction. The sense that pedestrians, her  homo genus, her category, were not welcome on this stretch of land, and the deeper and more perplexing question of where she would be welcome. Who or what would see her, know her, recognize her, redirect her?  How could she get home? Where was New York? Where were the familiar smells and tastes, the  slightly burned salt pretzel in Central Park, the welcoming arms of a loving person?  Was she married? Was she once married? But no more?  Was she old? How old? Was she breathing? Yes. Eating? Good idea. She had Reese’s candy bars in her bag, left behind by that woman, her daughter, her girl,  who took all her money and…fled for the hills…

How did she land here on this stretch of freeway?  This California freeway, that’s it. California.  She’s in California. She was going to come out in 1959 to do a screen test, but then Jack proposed marriage and she wanted that. Oh, yes, she wanted that.

On their honeymoon…1959…they traveled through Central and South America, following the Carnival, looking like movie stars, feeling love that was new and sensual and filled with promise. The photos capture a time when things were about to change between men and women, things were about to change between husbands and wives, but they hadn’t yet.

She had left The Place in Hollywood at 2 PM and was not returned until after 4 PM, so I can only speculate about the lost hours. I can say that she walked a mile, two miles, or more. I can say that the heel of her shoe broke off, or was broken, causing a kind of limp in her gait. I can tell you that the contents of her bag included “Funny Money,” given out as award money at auctions, shows, board games and other events.

Thank you, I can say now, for not walking into the oncoming traffic, for not having the illusion of invincible strength. Thank you, mother, for holding onto a fragile piece of logic, thank you for remembering the concept of danger, of speed, of harm and of mortality.

The officers found her at the freeway entrance, with her broken heeled shoe and her bag filled with miniature chaos. When they asked her where she lived, she showed them her expired I.D. But it was the funny money, printed with the name of the facility, that explained it all.

She arrived at The Place in the back of the squad car and was taken, not to her room, but to the lockdown facility known in assisted living parlance as “the more advanced wing.” Each facility she went to had a euphemism for the same type of secured ward. I won’t forget the piercing buzzer sound, the sound of confinement of prisons of, institutions, of punishment, of loss.

 This time, she landed in The Neighborhood.

 

 

 

 

 

 

* “The 101 east from Topanga (Canyon Boulevard) to Vignes St. is the most congested corridor in the nation right now, an average drive per day of 33 minutes,” said Chris Handley, [Inrix’s] vice president of products and analytics.

 

 

 

Escape From Assisted Living

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My daughter’s taken all my money, all my stuff, all gone, and she’s up in the hills… I saw her on the TV, up in the hills, and she’s taken all my money and she’s with that guy. A scary type. She left me with nothing. I know she’s up there. I saw her on the TV.        

This was the narrative about me that she recited for the first few months she was living at The Place in Hollywood. I don’t know how many times a day or how many times an hour she repeated this story, but I do know she hummed it like a mantra or a prayer or a form of introduction.

Hello, hello, yes, hello…Can you help me? Listen, my daughter’s taken everything I have… 

She told Tom, the director of The Place, Helen, the activities director, all the aides (known as “pals,” ) as well as the dining room staff, the psychologist, and the table mates, Carol, whose thick perfume announced her, and Bridget, whose husband was also at the facility, though they no longer recognized one another. My mom also told the mobile physicians about my thievery and love for the hills, and she told the “real” doctor, a gerontologist, as well as the Spanish-speaking toe nail cutting lady. She informed my children, my soon-to-be ex husband, and Arlene, a friend who became her paid companion.

I got dirty looks from some of her table mates. I did. You couldn’t blame people who no longer could distinguish now from then, or here from there, for thinking I was a freckled bad apple.  I imagine I had quite a reputation at The Place.

My mom believed in the narrative wholeheartedly, as she paced the hallways, reciting the story as if she were memorizing lines for one of her plays, and before landing in Tom’s office for a long cry and an attempted cigarette break. (Smoking was permitted in the fifth floor lounge and she had to be accompanied by an aid who was available to sit with her and join her for a cigarette). Since this rarely, if ever, happened, my mom found ways to sneak a cigarette in the bathroom, or in a stairwell, just as she had done when the airlines rudely forbade smoking on the transatlantic flights.

I wasn’t actually up in the hills with the loot. I was taking care of two delightful young kids and painfully separating from my husband when she moved into The Place. As I recall,  with the help of an agent, I was revising a book of short stories I’d written in graduate school, transitioning from my life as a freelance journalist to a new job as part-time college writing instructor, weeping on my way to work, and trying not to fall apart.

As I was moving through my life, unsure of how to reconfigure the flow of our now diminished household, unclear whether the family had been permanently fractured, my mother was pacing the carpeted hallways for too many days and too many nights, feeling lost and confused. neglected and alone, frightened and unhinged.

And so one afternoon, a soft and sunny one I’m sure, my mother put her fine leather bag on her shoulder, dotted her lips, and entered the elevator. She walked through the first floor lounge, past the frozen figures in their lounge chairs, the grey, pregnant-bellied men, wearing saggy arches as frowns, and staring at the television. She brushed past the soft-spoken pals in their easter egg blue uniforms and their squared off nails, and the devoted sons and daughters of the residents, stopping by at lunch.

She picked up speed with her head held high, the click of her heels dulled by the carpeting, a cigarette and lighter hidden inside her fist. In the final stretch, she made it past the friendly receptionist, with the confidence she had gained from walking across runways and stages all her life.

At roughly two in the afternoon, my mother, about 75-years-old, 114 lbs, 5 foot, 6 inches tall, and suffering from early stage dementia, walked out the front door and down the paved and manicured driveway –  to freedom.

 

 

 

 

 

 

Assisted Living

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Year Two

1. The poor girl was so confused she thought she was moving into a New York apartment or a facsimile of one.  She thought she was leaving the two-bedroom flat in Atwater that she had sparsely but low key decorated for a doorman building with a lobby and lively people who got fully dressed during the day, a place with taxi service, restaurant-style meals and books on the shelves.

I had toured the assisted living place, we’ll call it, The Place in Hollywood, and I knew all about the activity room, the happy hour, the brain games* stationed in the hallways, the auctions and fashion shows, and best of all, the movie night. The schedule for the movie night was issued each week and taped inside the elevator with images from the upcoming films. Over the two years she lived there, my mother and I made it halfway through Big with Tom Hanks, Young Frankenstein, a favorite,  and  maybe part of North by Northwest.

You couldn’t blame them for trying. But you could blame them for a lot of other things.

I remember moving day as being heartbreaking for both of us. It was like dropping off an injured child at an overpriced wilderness experience, knowing they may  become feral. Knowing they may not recognize you the next time you see them — or worse, they may not recognize themselves. I’d convinced myself that now that she could no longer take care of herself, this was the only choice. Or somehow the best lousy one.

We got her all settled in her suite overlooking the courtyard and met the sales agent for lunch, downstairs in the dining room.  He was what my father would have called a snazzy dresser.  Good shoes,  in his 30s, drove a Porsche. Over the Cobb salad, he complimented my mother, telling her how many friends she would make, reminding her there were several former actors in the facility and assuring us both of how much there was to do!

When he spoke to her, it wasn’t condescension I heard, but a cheerful voice shared  by nurses, aides, activity directors, and caregivers. Certain positive words were exaggerated: friends, happy, comfortable, fun, active, seniors. The expression my mother held on her elegant bones was one of polite reserve. She could still smile more or less on cues from others and she checked my reactions to see when to nod or laugh. She repeated many of her stock answers, always making sure the sales agent—and everyone she spoke to—knew that she was “born and raised in New York – and  glad to be back!”

Less than 24 hours after she moved in, I arrived after work to find that she had dismantled the entire suite and had crammed a range of odd, non-packable items into her suitcases – even things she didn’t own. She put silverware on top of some silk dresses, candlesticks, knick knacks, photo albums, stuffed animals, bright plastic plates, a toaster, and a somber-covered Andrew Wyeth coffee table book.

“I’m heading out,” she said. “Back home. This place isn’t for me. Besides, they eat too early and the people are not what I’m used to. Not friendly. There’s a know-it-all down the hall.”

But she didn’t move out. Instead, the next six months were filled with paranoia, inconsolable weeping, trying new psych meds, and a steady decline of her cognitive function. Months of reading and not remembering a single line. Months of saying she was sick of bingo and salty food and having strangers wash her body and put her to bed.

Months of planning her escape

 

 

 

 

 

 

*A study by Cambridge University found that video games improved the brain function of those with early memory problems which can be a precursor to Alzheimer’s disease.