The Last Good-bye

debphybeach

My sister Deborah died early Friday, January 31st, just as the sky began to shift from black to gray in its prelude to sunrise.  She died five years to the day she casually closed the door to the house she once loved and followed me to her car.  Five years to the day we left California and flew to Vermont for a visit she didn’t know would be permanent.

Frontotemporal degeneration stole Deborah’s ability to reason, to speak and, in the end, to swallow.  She’d been a healthy weight until the part of her brain that controlled swallowing began to die, and there were times when no amount of coaxing and tempting could help Deborah’s food travel beyond her mouth and into her stomach.   Her weight dropped, her body weakened.

The last Monday in January, the Hospice nurse heard pneumonia in one of my sister’s lungs.  By Tuesday, Deborah’s breathing was rapid and she was too weak to be helped out of bed.  On Wednesday morning as I lay beside her, Library Lion propped on my knees so she could follow as I read, I didn’t realize it would be the last time Deborah would be able to respond to me.

When I returned to Deborah’s room that afternoon, her eyes were half-closed.  The morphine the doctor prescribed to ease the burden of breathing had taken my sister to an in-between place.

I stayed the night with Deborah that Wednesday, holding her hand, listening to Elton John and Carole King.  Talking.  Remembering.  When I ran out of things to say, I read aloud The Lion, the Witch, and the Wardrobe, one of our favorites growing up.  And though my sister’s breathing was too shallow and quick, her heartbeat stayed strong.

When Jill, her companion, came at 8:30 the next morning, I kissed Deborah good-bye. I drove back to a world where breakfasts were eaten and parades of school buses delivered kids to their friends and teachers.  I showered and slept in a pool of sunlight.  Eight hours later, I was with Deborah again.

It had been six days since she’d eaten anything, six days since the Hospice nurse said my sister needed her strength for breathing, not swallowing.  Deborah, propped on a nest of pillows, feathers of hair swept lovingly away from her face into a braid, was emaciated.  Beanie babies Mickey and Minnie rested in the curl of her fragile fingers, fingers that a week before had clutched them to her chin as she slept.

I read aloud The Magician’s Nephew, hoping Deborah was discovering her own version of Narnia as she slipped away from our world.  I counted her breaths, 32 per minute jumping to 40 whenever a nurse had to shift her.  Over three times faster than my own.  Every two hours someone came in to check her, to squeeze morphine under her tongue a drip at a time.  Between doses I warmed her hands, stroked her face, moistened her lips.  Twice in the night I drifted to sleep for the better part of an hour, then jolted awake, pulse pounding until I saw Deborah’s chest rise.  By five o’clock, her breathing had slowed to 18 breaths per minute.

At 5:10, Deborah stopped breathing for one minute.  Apnea, a nurse said when it had happened earlier in the night.  I held my breath, too, until her chest rose again, her breathing quiet and even as if she’d never faltered.

I told her I loved her.  I told her I’d miss her and that she’d always be my big sister.  I remembered how, early on in Deborah’s disease, she used to say she felt as though an alien had taken over her body, and she wanted it to give Deborah back.  To let her be Deborah again.  “Pretty soon you’ll be able to leave that alien behind,”  I whispered as I laced my fingers through hers the way she insisted whenever we held hands.

At 5:15, Deborah stopped breathing again.  I stroked her arm and waited for her chest to rise, but the only movement I saw was the beat of her heart under the thin gown.  Soldiering on.  Until.  It.  Stopped.

I stood watch over the shell my sister left behind, hardly able to fathom her silent passage from the living to the dead.  I tried to focus on my hope that Deborah was whole again, no longer a shadow of her former self, but it was impossible not to cry over the vulnerable person my sister had become the last years of her life, impossible not to cry over the gaunt face that would never again flash a smile or gaze at me with childlike wonder.

I still can’t bring myself to look at photographs taken of my sister after FTD began ravaging her brain.  I can’t bear to see how helpless and dependent she became.  I can’t bear to see the last timid smile caught on camera as Deborah modeled the new pajamas I’d pieced together into the romper-style she needed to wear.  Soft plaid bottoms as fuzzy as a kitten, and cotton candy pink top.  The same pajamas we dressed her in before they took her away.

Yet photographs are healing me, too, photographs taken when my sister was healthy and strong and embraced life.  Each image a memory of the sister I loved and admired:

Deborah proud beside the rust bucket car she bought in grad school.

Deborah elegant in a black evening gown and opera gloves for the Emmys.

Deborah playful on a gingerbread house building-afternoon with my children.

Deborah with her friend Phyllis on the beach—furry Satchmo held close—my sister’s smile radiating pure joy.

The Deborah she once was.  The Deborah I hope she is free to be again.

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Retrospective

The young woman leaned back in her straight chair, long legs stretched, arms crossed below tan-lined breasts.  Her eyes issued a challenge.

The life-sized nude presided over Deborah’s living room, an oil painting with the depth and glow usually seen in painting by old masters.   Unlike those nudes of centuries past, however, this model was undraped, her dark swath of pubic hair defying convention.  My mother referred to the painting as That Nude.  I wonder if the model’s defiant stare reminded her of Deborah, of the way she denounced our parent’s moral code by embracing the sexual revolution of the 60s.  I wonder if Deborah loved the painting for the very reason my mother hated it.

My sister’s house was full of art.  Oil paintings–many by a former lover, numbered prints, photographs and reproductions, a composite of people and ideas she admired.

A larger-than-life headshot of Frida Kahlo, the Mexican artist renown for her self-portraits and feminism, commanded one wall of Deborah’s dining room.  The intensity of Frida’s stare, the jaw set of a strong woman did not take away from her dark beauty.  “I am grateful to the women who came before me and were willing to take a stand,” my sister once said in a keynote speech at a Women in Leadership conference.  “We no longer have to dress in dark suits with silk bow ties in menswear patterns as we were advised in the seventies.  Today it is possible to be both powerful and feminine.”

A black and white photograph shot in 1967 of a uncharacteristically demur Janis Joplin, hair flowing and naked body adorned with peace beads, hung to one side of Deborah’s front door.  A tribute to the first white, female rock star, a headliner at Woodstock–the festival my sister was not allowed to attend?  Or a memory of innocence lost when baby boomers exchanged their beads for degrees and stepped into corporate America.

Down the hall a gaunt John Lennon, eyes obscured by dark glasses, sat at a mixing board with a cigarette in one hand.  His head turned to the photographer, expressionless.  The caption below the large black and white photo said  Double Fantasy recording session.  NYC, 1980.  The album was released in November.  Three weeks later, Lennon was gone.

Two silkscreen portraits of Man Ray hung in Deborah’s guest bathroom.   Like other Dada artists, Man Ray was anti-war, anti bourgeois, and had an affinity to the radical left.  The silkscreens were the work of Andy Warhol, another icon of the counter culture revolution.   Deep inside, my sister remained a child of the sixties.

Her house was full of art–far more art than a small assisted living apartment could accommodate.  I let the estate and moving person I’d hired take any pieces that weren’t going with Deborah.  I thought they were too valuable to distribute among family members.  I thought they needed to be sold to bolster her savings, which was decreasing at an alarming rate.

Three years after moving Deborah away, I clicked through digital photographs of her house and tried to remember it in happier days, the way it was before I systematically tore it apart.  I wish there had been more time to quietly reflect before dismantling her life, time to decide what should be treasured and what could be scattered to the winds.

I wish I hadn’t given up so many pieces of my sister.

Memory Care

“Why did you do that?  Why did you do that?”

The words, equal parts outrage and despair, came from the tall gentleman who wore a hat more commonly seen in the Australian outback than Virginia.  He looked like a man ready to feed livestock, clear brush, chop wood, a man who embraced the rigor of independent living that kept him fit and erect despite his seventy odd years.  I glanced back as his caregiver, solid as a steer, spread her arms wide and blocked his escape route until the gray steel door locked behind her.  As I led my sister Deborah down the hallway to her bedroom in Wellspring, the memory care unit that had been her home for the past three years, my heart ached for the man.  For my sister.  For all the people whose lives had been stolen by dementia.

“I hope you realize I can’t possibly live here,” my sister had said four years ago when my brother Richard and I took her to look at assisted living facilities near her house in Beverly Hills.  “Everyone here is at least 20 years older than I am.”

She knew she wasn’t herself, but didn’t realize–would never realize–just how sick she was.  Frontotemporal degeneration prevented her from understanding the reality of her deteriorating brain.

Later that day when we visited a second facility near the Hollywood Bowl, a life-size cardboard cutout of Barack Obama stood by the fireplace of the living room.  A good omen since my sister spoke of Obama with great admiration.

As the handsome young sales director showed us around, he spoke highly of the facility’s convenient transportation options and cultural outings as well as the many learning opportunities available to their residents.

“This place has a lot to offer, don’t you think?” I said to my sister.

“Please don’t make me go here,” she answered.

Her childlike plea, the antithesis of the response she would have made when her brain was still intact, was one more heartbreak I had to soldier through.  Tears could come later, when I was too tired to do anything other than cry in the dark for the sister I’d lost.  Now I had to find a refuge for Deborah, a place where she would be comfortable and safe during her brain’s slow death.

When the facility in Hollywood said the only way they could deal with Deborah’s wandering was to put her in the memory care section–my youthful, fifty-eight year old sister locked up with people in wheelchairs whose heads listed to the side–I took her back to Vermont with me instead.

Deborah’s new home was Woodstock Terrace, an independent living facility as upscale and gracious as its location, a New England village that the Rockefellers had adopted and protected since the century before.   This facility would be small enough for staff to keep tabs on my active sister whose judgement was rapidly decreasing.  They would make certain she wouldn’t wander down roads in the dark.

Taking her to Woodstock felt like a betrayal of trust.  “You’ll only be here for a little while,” I said, setting her computer on a smaller version of the round table she used as a desk in California.  Deborah immediately sat and played spider solitaire as I hung her clothes and arranged all the photographs and mementos I had squeezed into her suitcases.  She was still playing when I finished.

“I’ll come as soon as school is over tomorrow,” I said, leaning down to kiss her good-bye.  “We can have dinner together.”

“Okay.  See you then.  And thanks again for everything you’re doing for your poor demented sister,” Deborah said, never taking her eyes away from the screen.

She called me a dozen times a day from her apartment.  Far from berating, she’d taken to calling me Mom–not in front of our real mother, of course–because I was taking such good care of her.   She phoned to share memories attached to the photographs scattered around her apartment, or to say she really should get on with her job hunting in California.  Sometimes she’d remind me she was the youngest person living there, by twenty years or more, but this mildly spoken complaint would always be followed by a lively description of the birthday party given for a ninety-two-year-old man the night before.

She described the party to me for months.  In my sister’s mind, though, it had always happened the night before.

So when I listened to the caregiver distract the tall gentleman, this newest Wellspring resident who wanted to go home, I was grateful for the unexpected gift hidden in the carnage of my sister’s life:  the move from an elegant canyon house into an apartment overlooking a tiny courtyard took place with hardly a murmur of protest.

Deborah’s Closet

I could fit my twin bed, desk, and dresser in Deborah’s closet in Beverly Hills, and still have more space to walk around than I had in my bedroom growing up.  

One wall was covered–from the Berber rug to the vaulted ceiling–in shoes.  Dozens of shoes.  Heels catching the edge of slanted shelves, toes pointing down, a who’s who of designers’ names embossed along the inner soles:  Cole Haan; Donald Pliner; Gucci.  I wondered where Deborah kept the pair of Cobby Cuddler boots she bought at Kmart in Vermont.  Every snowy Christmas afternoon walk thereafter, she had exclaimed over the wonder of inexpensive boots that lived up to their name.

The long back wall of Deborah’s closet was devoted to hanging clothes, some two tiers high:  skirts with skirts, shirts with shirts, blazers with blazers–you get the idea–arranged in color groups.  Above the clothes, handbags and totes for all seasons spilled over two shelves.  Above the shelves were cabinet doors hiding things I needed a stepladder to see.

The next wall, the wall facing the shoes, was lined with hangers as well.  Once when we visited my sister, she brought Courtney and me upstairs to this closet and we played dress-up with the clothes on this wall.  Deborah passed us hanger after hanger of shimmering gowns, flowing skirts, metallic tops worn to parties and award galas I’d only seen on television.  Little black dresses, silky sweaters, slinky skirts with slits for walking.  We were Barbie Dolls for her to accessorize as she gave us a glimpse into her world.

Deborah had dug through built in drawers on the fourth wall for necklaces, hair ornaments, pashminas, and antique clutches to complete our ensembles.  You look amazing, beautiful, gorgeous, she had exclaimed as we studied our foreign selves in the shop-size mirror, Deborah off to the side, clasping her hands in delight.  Courtney was the one in college, but we all acted like roommates that night, vamping for each other and giggling as we took turns trying on the bedazzled bustier.  

Three months after I moved Deborah to Vermont, I sat on the cedar chest in the middle of her Beverly Hills closet, remembering.  Dust motes danced in the skylight above my head, poor substitutes for the sequined shimmers of the night we played. 

When Courtney was still in high school, she and had I gone to California for the first time.  Deborah was in her Santa Monica house then, the one with a fairy tale turret and diamond pane windows.  She hadn’t invited us into her closet during that visit.  We didn’t even go into her bedroom.

I had thought the six years between our first visit to California and the visit where we played dress-up had softened Deborah’s edges.  I had thought the playful, gentler version of my sister we’d seen–the one who invited us backstage into her glamorous world–was a reflection of happiness during a time when her life was resplendent with friends and success. 

I was wrong. 

When I started sorting through Deborah’s clothes, pulling out things she would need when spring finally made it to Vermont, I was surprised by what I found:  worn down heels, stains on sweaters, broken zippers, buttons hanging by a thread.  Signs of a life gone wrong lurking in my sister’s closet long before anyone knew what was going on.

Doll Story–Then and Now

I saw Josie first, even though she was my sister’s Patti Playpal, a doll the size of a three-year-old child.  I saw Mom stuff her in the back of the linen closet, wrapped in one of the brown army blankets Dad brought home from WWII.  Mom made me promise not to tell my soon-to-be nine-year-old sister about it, as if being five wasn’t old enough for me to know that Debbie’s birthday present was supposed to be a surprise.

I coveted that doll and begged for one of my own.  When Mom and Dad told me they’d match my money if I saved to buy my own Patti Playpal, I spent the summer digging up dandelions, pairing clean socks from the clothesline, and sudsing up bumpers and hubcaps whenever Dad washed the station wagon.  My allowance stayed in the piggybank when the Good Humor man drove down our block on sticky summer nights, and I only got popsicles if Mom passed out nickels for an after-dinner treat.  By late fall, I’d reached my goal:  three dollars and fifty cents–half the price of the doll.  

Patti was waiting in the back seat one afternoon when Mom picked me up from ballet.  I was too excited to mind that she hadn’t taken me to the store with her to choose.  Now I had a doll to sit on my bed, too.  I loved her blue eyes and rosy cheeks.  I loved her even if her blond hair was thin and straight, not nearly as pretty as Josie’s.

Playing with our dolls involved putting them in clothes I’d outgrown, fixing their hair, and reading to them. On Christmas Eve, Debbie and I dressed Josie and Patti up and stood them by the fireplace to await our company.  Mom even let me unwrap one of my presents early–red doll shoes–so Patti wouldn’t have to be barefoot.  The following summer, I cut Patti’s blond hair to a Buster Brown bob that I immediately regretted.  And once as I tried to wrestle an old undershirt on Patti, her arm came out of its socket.  When she came back from the Doll Hospital with a rectangular hole cut out of her back, I looked longingly at the still perfect Josie sitting on Debbie’s bed.

When Debbie bought a sophisticated Platinum Blonde Barbie with a short and poofy bubble cut, she let me play with her first Barbie doll, whose long red hair was pulled back into a ponytail.   But whenever her friends came over to play Barbies and Debbie shut me out of our bedroom, I had to leave the ponytailed doll behind.  I eventually saved up for a Barbie that was completely my own, copying Debbie by choosing a Bubble-cut Barbie, too–only mine was Ash Blonde.  The Barbie with the ponytail, though, was always my favorite.

Debbie left Barbie dolls behind when she started Junior High, graduating to autograph dolls instead.  Her friends signed their names all over the dreamy Dr. Kildare doll that lounged against the bed pillow Josie once claimed.  I bet I was the only girl in my third grade class who had three Barbies then–one of my own and two hand-me-downs from Debbie–to play with.  

I got a big box full of Barbie clothes that Christmas, an amazing wardrobe hand-stitched by Grandma Blackwell.  It was a day to remember, but not just because of the clothes.  I had come down with tonsillitis during the night and was too sick Christmas morning to even open my presents.  I was curled on the sofa, limp with fever as Mom and Debbie sat on the floor beside me and pulled out brocaded evening gowns with shawls trimmed with feathers or mink, exclaimed over velvet skirts and silky tops, and dressed the Barbies in Jackie Kennedy style taffeta shifts with matching coats.  With the exception of the pearl trimmed wedding dress, there was two of everything:  opera dresses, housecoats, shorty pajamas, beach robes and more.  I was glad Grandma had begun her monumental sewing project when Debbie still liked Barbies, because the outfits lured my sister into playing dolls with me again when I was feeling better.  We dressed our Barbies to go to ballets, operas and balls, Debbie leading the way with fashion even then.  The hours Grandma spent lovingly cutting up old slips and stoles and piecing together scraps of lace and fabric didn’t just make my Barbies the best dressed dolls in the neighborhood.  Grandma’s gift gave me time alone with my sister again.  
 

Deborah turned sixty-three last week.  I brought her to our house for a little party, even though I knew it was going to be hard to get her back down the porch stairs when it was time to drive her back to Wellspring.  I figured if worse came to worse, my husband and I could cross our arms into a chair and carry Deborah down, with Jill–Deborah’s companion–and Mom steadying her from behind.  

After a walk around the gardens, we went inside for cake and ice cream, which Jill fed Deborah between bites from her own plate.  Then it was time for the birthday girl to open presents.  In truth, Mom and I were the ones doing all the opening since Deborah just stared at the packages, her hands folded in her lap as if waiting for the presents to reveal themselves.   I remembered four years earlier on her fifty-ninth birthday, the first since I’d moved her to the assisted living facility in Vermont.  Deborah had opened her gifts with great abandon then, barely glancing at one before reaching for the next.  “Are there any more?” she’d asked after finishing the pile I’d amassed, my feeble attempt to make up for her usual birthday gatherings with old friends.  Friends who still met, friends who mourned the empty space Deborah once occupied and missed the poems she sometimes composed for such occasions.  

In the four years since, Fronotemporal Dementia (FTD) had crept further into my sister’s brain, stealing her words.  Her laughs were grunts, her exclamations a string of vowels.  As Mom and I opened her presents in my dining room with Deborah looking passively on, we filled her silence with a running patter like sports commentators working the crowd.  Would you look at that wrapping paper?  What a bow!  The scotch tape’s giving way, the paper parts, and WHAT do we have here?   

Mom gave her a complete Rapunzel set to go with her other Disney Princesses.  When Deborah was still a vice president at Disney,  I remembered her talking about the Disney Princess marketing phenomenon, how quickly it caught on for little girls to tour the parks dressed as their favorite characters.  Now whole aisles at Walmart were devoted to Disney Princess dolls, costumes, games, and art activities.  

A few months ago, I bought Deborah her first Disney Princess, a four inch fashion Cinderella doll with MagiClip dresses that even preschoolers could slip off and on with aplomb.  I bought it because Deborah liked to hold onto things, because Deborah needed to hold onto things, even when the things were unsuspecting people’s arms or wheelchairs.  I bought it because Jill mentioned that Deborah liked to hold the small carved figures she brought back from India years before.  I hoped that Deborah would look at it as a token of her years at Disney rather than a toy, a reminder of better times instead of further proof of her brain’s degeneration.

Deborah’s eyes had sharpened when I handed her the little Princess doll, and she had given the Cinderella her full attention.  Anything that drew Deborah out of the apathetic haze of FTD, anything that stimulated and connected her to the rest of the world, was a triumph, a bittersweet victory.  So I combed the super stores and added Snow White, Ariel, Belle, Sleeping Beauty and Tiana to our growing arsenal of ways to stimulate my sister.   Jill used the Princess dolls to stage fashion shows and swim parties.  When I came to take Deborah to the park, the Princesses might be lounging on handkerchiefs against the sides of their Tupperware pool, or posing in front of a mirror.  Whenever Deborah and Jill headed out on the Wellspring bus for a scenic drive, a couple of Princesses would peek out of my sister’s travel bag, waiting to ease her restlessness, her compulsion to move that was sure to come twenty minutes into the trip–the yin to FTD’s signature yang, inertia.

I went out on a limb with my birthday gift to Deborah this year.  I bought her a toy that wasn’t a nod to her success at Disney, a toy that I hoped would provide one more avenue for pulling her out of the daze that had become the default of her being.  I bought her Abby, an eighteen-inch, American Girl-type doll with blue eyes and blonde hair that fell past her hips.  A doll who looked like a larger version of Barbie’s little sister, Skipper.  

“You’re going to think I’ve lost my mind,” I said, passing her birthday bags that held Abby and several outfits.  Even though Deborah’s behaviors had more in common with toddlers than adults nowadays, I always worried that some essence of my sister still glowed deep inside,  that I might diminish the glow by treating her like a child.  

“It’s for your inner fashionista.” I showed her Abby’s tutu and leggings, pink leopard print pajamas, and a Disney Channel-worthy outfit with matching beret.  “Remember how we used to dress our Barbies for the opera?”

Deborah didn’t reach for Abby when I sat the doll on the table in front of her.  But she didn’t wander away to stretch out on a sofa, either.  She didn’t leave her little party to restlessly roam the downstairs peering into rooms or fumbling with the latches on the doors leading outside.  Deborah stayed in her seat and watched closely as we changed Abby into a new outfit, listening as we exclaimed over the hat and matching shoes.  

“Isn’t she the cutest thing you ever saw?” I stood Abby where my sister’s cake had been, and turned the doll around like she was at the end of a fashion runway. “Here, you hold her.”

When I lifted Deborah’s arm, her fingers automatically clasped Abby around her waist.  She bent closer, studying the doll’s face with the same intensity she used to pour into books.  Her mouth was open and drool pooled in her lower lip.  I caught it as it spilled, an automatic reflex using the quilted bib that had become a critical part of Deborah’s outfits now, one of many I’d sewn in patterns to coordinate with her clothes.

I couldn’t linger on the sadness I felt, watching my sister drool like a teething child.  I couldn’t linger on the stark contrast of this pathetically vulnerable adult with the confident sister I remembered.  My job now was making Deborah’s life as pleasant as possible.  Grieving wouldn’t further my cause.  

“If you want, I can sew clothes for her,” I said, thinking about the three pieces of seersucker fabric that were folded upstairs in my sewing room.  I’d bought them so I could make lightweight bibs for Deborah to keep her cooler in the summer months.  The first one I sewed out of seersucker was a total bust, soaking through to her clothes after five minutes in the park.  I figured I could use the  remaining fabric to make Abby sundresses and nightgowns.

“Would you like that?” I asked, rubbing Deborah’s back, hating how easy it was for me to  fall into a kindergarten teacher voice when carrying on my one-way conversations with her.  

On the way back to Wellspring, Jill suggested Deborah give her baby a kiss.  I glanced in the mirror as my sister obediently bent over her doll.  Jill was wonderfully upbeat–playful and fun–and Deborah responded to her well.  Even so, I couldn’t help but cringe whenever my sister was spoken to like a child.

I hated the way my steps quickened when I slipped out of Wellspring, relieved to leave Deborah in her bed, nose to nose with her doll.  Guilty relief to leave the shell that used to be my sister and go back to the riches of my life.  

When I had set her birthday cake with its flickering candles in front of Deborah that afternoon, she hadn’t known what to do.  “Close your eyes and make a wish,” I had prompted, closing my own for a moment.  “Did you do it?  Okay, now blow.”

We leaned in together, but it was my breath that put out the tiny flames.  

“Yea!” I said, clapping the way I did every time Deborah got out of the car without being pulled.

“Yea!” Deborah echoed, a smile flickering across her face as she clapped with me.

“That means your wish will come true,” I had said in my brightest, kindergarten teacher voice.  Cringing as I heard myself treating Deborah like a child.

As I raced away from Wellspring, glad to have her birthday–and the burden of trying to  make it feel special–behind me,  I wondered if she’d made a wish.  

I had.  I wished I could make Deborah’s world right again.  But like most birthday wishes, I knew it would never come true.
       

Deborah’s Brain

When Deborah first starting doing things that alarmed us–repeating herself, getting into car accidents, perseverating about Mother Earth–my research was geared to finding out what was wrong and how we could fix it.  Once Deborah was diagnosed with Frontotemporal Dementia, FTD, I searched for ways to maintain the quality of her life while keeping her safe.

As Deborah grew more silent and infantile by the day, though, I found myself searching her face.  Blue eyes, the right one still drifting center when she tired.  Strong nose and jawline that used to photograph well.  Smile with a faint crowding of front teeth that a seventh grade retainer failed to correct.  The pieces were all there, but they no longer added up to the sister I knew.  Something deeper was missing from her face, an elusive quality that was as hard to pinpoint as the essence that separated the Masters from lesser portraits.

Deborah was alive, of course, but in a different way than she was before the FTD developed.  I wanted to understand what was happening to Deborah’s brain.  I wanted to know why her neurons began to die.

I scoured websites from the major FTD research institutions:  University of California, SanFrancisco; Harvard’s Massachusetts General; Johns Hopkins; Penn State.  I read about DNA, chromosomes and genes, crash courses in genetics.  I saw more references about what wasn’t known about FTD than what was.

With apologies to those readers who left high school biology with a better understanding of genetics than I, this is what I learned.

We are made of cells with blueprints–DNA–that tells our bodies how to grow and function.  Genes are the part of DNA that give instructions for making proteins.  Proteins are necessary for cells–for us–to survive.

Genes send these instructions using four different chemicals grouped in sequences.  Think of the chemicals as letters, the groups as words, and the sequences as sentences and you’ll get the picture.

Sometimes a gene will malfunction and send the wrong instruction to the cell.  Think of the malfunction as a typo that changes a word and meaning of a sentence.  The incorrect instruction may cause the cell to make the wrong kind of protein, or too much of the right kind of protein.  It may also cause the cell to shut down completely.  When a gene doesn’t work properly, it’s called a mutation.  In Penn Medicine’s guide, Understanding the Genetics of FTD, they say it best:   “Mutations are genetic spelling mistakes.”

FTD is caused when nerve cells in the frontal and temporal parts of the brain degenerate.  Scientists aren’t certain what causes these nerve cells to die, but when they autopsy brains of people suspected of having FTD (like Alzheimer’s, a definitive diagnosis can’t be made until the patient dies), they find abnormal build-ups of specific proteins, build-ups that may be caused by mutated genes.

What my research can’t tell me is why the genes in Deborah’s started mutating in the first place.  “Is it inherited?” people asked when they heard about Deborah’s disease.  I heard the rest of their question–Are you going to get it, too?–though they never said it out loud.

I looked at the statistical chances of Deborah having gotten FTD in the first place.  She didn’t fall into the 10% strong family history of FTD group because our parents and grandparents didn’t have it.  Then again, our father’s father and our mother’s mother both died before they might have shown symptoms of diseased brain cells.

She could have fallen within the 20-25% group with some family history of neurodegenerative (brain cell) disease because our first cousin and her mother both had Alzheimer’s.  Other aunts and uncles may have developed it as well, had they not died so young.

But I needed to believe Deborah was in the 60-70% class of FTD, the group called sporadic.  I needed to believe she was one of those people who got it out of the blue.  I needed to believe that just because my sister was hit by a meteor, doesn’t mean one is going to strike me, too.

No amount of speculation on my part, however, would change the following truth. Even if FTD had me in its radar, was at this very moment plotting to infiltrate my brain, I wouldn’t see it coming.

Small comfort.

My Sister’s Keeper

I am Deborah’s voice.  I am the archivist of her past and the puppeteer of her present.  I am my sister’s keeper.

This is my life.

I swing Deborah’s legs off the bed to jumpstart the part of her brain that used to be driven by motivation.  “Let’s go to the park.”  It is only when she is standing that the muscles in her face awake and she smiles, locking eyes with mine, registering who I am.  She grabs my hands and pulls them chest high so she can lean into me, pushing so hard I have to step back with one leg to keep us both from toppling.  “Do you want to dance?” I ask, adding a little bounce as I redirect her weight into a side to side motion faintly reminiscent to Betty Boop’s wiggles.

I don’t understand this pushing game of hers, this ritual, and she no longer has the means to explain.  Frontotemporal dementia has eaten the part of her brain that controls her words.  FTD has taken another piece of my sister.

Laurie, the red-head who is always laughing, sticks her head in the door.

“You taking Miss Deb Deb out? I just changed her.  Have a good one.” She disappears before I can even answer.  When we come back, I’ll ask if Deborah needs more yogurt or jello from the store, sweet favorites to help trigger her swallowing mechanism during meals.

It is a two handkerchief day in the park, one to wipe Deborah’s nose and the other to catch drool.  Some days we don’t need handkerchiefs at all, somedays we need four.  I choose a walk that has no stairs to play tricks on Deborah’s depth perception.  It is too cold to wait at the top until her brain allows her foot to venture the first step, a step that starts an automatic sequence that will carry her to the bottom of the flight.   Six months ago we were walking down stairs with little more than a reminder to hold the railing with the hand that wasn’t clutching mine.  Six years ago, Deborah and I ran up and down the stairs to the beach in Santa Monica to tone our gluts.  Now the only steps Deborah can navigate are ones leading up.

In April 2009 when I cleaned out Deborah’s house, apologetically sorting treasures into piles that included Good Will and Trash, my sister–3000 miles away and blissfully ignorant to my treachery–played solitaire in an assisted living near my home.  A zippered plastic bag, the thick, pliable kind that holds high-end blankets, caught my eye as I raised my face from the sad mounds of clothes.  I stood on a build-in to reach it, stretching to slide it off the shelf.  When it tumbled to the carpet, yellowed letters and notebooks spilled out of a split seam.

My sister’s memories.  Letters from summer camp.  Diaries from junior high.  Notes from high school boyfriends.  Letters from friends as isolated and trapped as Deborah felt during long summers between college semesters.  Journals of dreams, break-ups, and resolutions.

A treasure trove that is now sorted into files sitting on the bed in the room where I write,  a room where I examine the irony of fate.  As Deborah’s archivist, I’m learning more about my sister, even as she is slipping away.

ImageDeborah and Dale on Deborah’s birthday, June 2009