Back to Black

A Swift Current Back to Black Hallie Swift's latest essay about our mother's decade of dementia

Vuillard The Artist’s Sister with a Cup of Coffee 1893 the Fitzwilliam Museum University of Cambridge

 

We only said goodbye with words

I died a hundred times

You go back to her

And I go back to

I go back to

us

 

I knelt by my mother’s side

But mama…

Her smoldering eyes

drilled right through me as

she unleashed a torrent of accusations;

every word

a scorching, vitriolic indictment of

me.

Her nurse put her arm around my shoulder

You need to leave. You do not deserve this.

But it’s my only chance…

You need to leave.

The nurse quickly led me to the back door

Go.

Now!

I stood

shaken and dejected

in the blinding glare of the Southern California sun.

This raw, tormented incarnation was a new twist

-at least for me—

in the trajectory of my mother’s disease;

I had never seen her

in the full grip of dementia’s vise.

I had grown accustomed to many aspects of
the disease—

dissolving memory,

fantastical stories,

even harsh diatribes;

but I had never witnessed

the searing black vortex

which enveloped my mama—

the dementia horror show.

But even though I saw it,

I didn’t accept it;

I did not try to understand the disease; and

I dared not imagine

what it was like for her.

I buried the actual words my mother said that day—

I cannot remember a single cutting recrimination that

stung so deeply and

caused her nurse to push me out the door.

Retreating to my own fantasy world,

I continued to discount the staff’s reports of

my mother’s increasingly volatile, aggressive behavior–

even when

they moved a roommate

for her safety;

or warned another resident’s family

about my mother’s fierce outbursts

against their elderly matriarch.

They must be exaggerating, I silently intoned;

in my mind, my mama was the innocent – always.

And I was incensed when another resident accosted me in the hall:

Is that woman your mother? She’s awful –she yells through the night and we can’t get any sleep!

My mother…is not awful–she can’t control—she has dementia—this is not her!

But it was her.

And again and again

I simply refused to admit

what was happening.

It would have been so much easier—for everyone

–for me—

if I had only accepted

the vicious truth.

But then one day

an exhausted charge nurse

pulled me aside—

that week,

she said,

my mother’s screams

had filled the halls of the nursing home

in the darkest hours of the night.

And with her revelation,

I could no longer deny

the stark,

surreal,

tragic force

of my mother’s disease–as

night after night

dementia took her

back to black.

Hallie, I need to know something…

did your mother lose a baby?

What?

Did your mother lose a baby?

Why?

Because every night, we give birth.

You—what–

Every night–your mother wakes up– screaming–she’s having a baby.

The nurses surround her.

Push Push
PUSH…

And every night,

her baby is dead.

Hallie, I need to know–did you mother lose a baby?

There was…um…between my sister and me…

Then that explains it. Your poor mother loses her baby
every night…

we’re trying to help, we’re doing everything we can– but
I hope—for everyone– this ends soon…

There.

There you have it.

That’s all you really need to know.

Dementia is a horror show.

I see it so differently now than I saw it then;

but then

and now

I didn’t want to know
any of this.

Then and now

I cling to

another memory of us–

we gaze at the view

from the nursing home garden;

we speak in silence as

the sun sets

red gold purple orange turquoise blue

across a glimmering city.

She even invented a word for

our dramatic evening skies–

Dinnerscapes, she called them

(and how did her demented mind,

I want to know,

capture with one word

the landscape of our dimming day)

A Swift Current Hallie Swift's latest essay about our decade of dementia

“I called them Dinnerscapes because they remind me of your art” Dinnerscape, a pastel by Mickey Myers, all rights reserved.

 

I cling to

our dinnerscapes–

but that’s the Technicolor version

of our story.

In the end

the horizon always fades to black.

And I must finally face

the one truth

I refused to accept

all those years.

My mama lived through hell on earth.

It was called dementia.

She was not awful,

except she was.

You do not deserve this.

 

A Swift Current Back to Black Hallie's Swift's latest essay about my mother's decade of dementia

Vuillard Woman Seated in a Dark Room, 1895, Musee de Beaux Arts Montreal

Opening lyrics from Back to Black Amy Winehouse and Mark Ronson composers, copyright 2006 Universal Music

Advertisements

Dancing in the Dark

A Swift Current thoughts about how we treat the elderly

Madame Vuillard at Table Eduard Vuillard 1888 Private Collection

The times are tough now, just getting tougher

The whole world’s rough, it’s just getting rougher

Cover me,

 Come on baby,

 Cover me…

 

 

Did you watch the Grammys, Hallie?

Yes, but I was disappointed. I wanted Bruce Springsteen to win but, well… you probably don’t even know who he is…

Bruce Springsteen? Hallie! Of course I know Bruce Springsteen. Bruce Springsteen is THE BOSS. After all, Hallie,

I live in Hollywood!

I’ve always loved that story. I thought it showed my mom’s youthful vigor; her spirit; her vitality.

But now I think it tells you

something about

me.

When that conversation took place,

my mother was 70 years old.

Though she spent her days working in an art gallery–

her evenings watching PBS or reading The New Yorker

to me, she was old.

And old meant out of touch—unaware–incapable of appreciating

the good and the new and the exciting.

But even if I detected her mild annoyance, I didn’t begin to anticipate what was in store for her–

or understand the battles that would shape the rest of her life.

Some incidents seemed minor at first;

like the day we went to the drug store,

only to discover her doctor had failed to call in the prescription.

The wait was long; the clerk was rude; the pharmacy had no chairs.

And as we stood,

I witnessed time take its toll–

at my mother’s age,

nothing was minor.

Other incidents were more serious,

harrowing, in fact;

like the day she walked to the bus and

muggers knocked her to the ground.

They stole her purse,

broke her wrist;

a few weeks later,

money was missing from her account.

At the bank,

the teller yelled

Speak Up!

She called me in tears.

I did what I could

from 3000 miles away-

but I couldn’t change her reality–

she was old;

she was vulnerable–and

she knew it.

But it wasn’t only impatient clerks and cruel strangers who made her days more difficult.

The truth is

I did too.

To this day, I relive moments that should have been different

Guess what mama? My company is sending me to London and Paris!

Oh honey, that’s wonderful! I’m so happy for you.

I’m so excited.

Tell me, are you flying to London and then returning to New York and then going to Paris?

What?

Well, um, are you going to London and then back to New York and then to Paris?

Why would I do that, mama? Think about it. Why would I fly all the way home when London and Paris are so close?

I don’t know.

You don’t know? Why would you ask me that? Look at a map! THINK ABOUT IT!

Her voice was barely audible

I was just asking…

But I wasn’t cutting her any slack. I thought she asked silly questions to get attention. I didn’t appreciate that her questions were harmless. It never occurred to me that she might be confused.

And I never once thought

what is this like for you?

Instead our conversations became delicate dance, often underscored by my dismissive tone and impatient replies.

My mother endured it until she could take no more. But one day, through the unfiltered voice of dementia, my mother’s truth came roaring back at me.

I was visiting the nursing home. But it was no ordinary visit. That day, when I arrived in Los Angeles, I learned my mom’s last remaining sibling, her beloved Julia, had died.

It was my job to tell her.

We sat in the garden in the fading afternoon light. I told her I had bad news.

Something happened, mama. And it makes me sad. And it’s going to make you very sad, too.

I looked into her eyes. I waited.

She murmured

Julie?

I nodded.

She threw her hands to her face. She screamed–shrill—piercing–raw–

She was like my mama–my mama! Oh, Julie, Julie– I had a feeling! I should have been with her.

Oh mama, no. It’s OK that you weren’t there.

NO, it’s not OK! I knew I should have gone to Seattle. I wanted to go. How could this happen?

Mama, she was 99.

Yes, and I thought she would live to be 100!

My mother was rocking back and forth—sobbing

My poor Julie, all alone, all alone…

I was desperate to calm her–

And so I lied.

It’s OK, mama. It’s really OK. She was peaceful—and well…she wasn’t alone. You know, Aunt Julie had lots of friends…

Friends?

Yes, friends. Aunt Julie had lots of friends!

(Clever me—she’ll stop crying if she thinks her sister was surrounded by friends…)

My mother’s eyes hardened. Her expression froze in contempt. Her entire body trembled

Aunt Julie didn’t have any friends. She was old.

And people HATE old people.

She spit each word with a sneering, harsh growl:

OLD!

The nursing home staff was watching from a distance. They quickly approached. My mother grabbed her nurse’s hand

My sister died. My Julie…

We’re so sorry…let’s go inside…

I sat alone in the garden, staring at the dimming sky; upended by her ferocious rebuke.

People hate old people–

my lie had unleashed her truth.

I knew

she had heard every

curt response–

exasperated sigh–

disdainful tone—

from the world;

from me.

 

A Swift Current Thoughts about how we treat the elderly

Girl with the Flowered Background, Richard Diebenkorn 1962 Modern Art Museum of Fort Worth

 

After that day

I’d like to think I finally saw her;

I’d like to think

I changed;

I’d like to think I was more understanding, more honest, more giving

in the decade left to my mother

after her Julie died.

But one thing is true:

my mother’s words reverberate to this day.

As I help an elderly gentleman search for a jar of cloves in the market;

slow my gait behind the woman with a walker;

instruct a clerk to assist the old lady in the eyeglass store

(will somebody help me please?),

I wonder what it’s like for them—

and hope my smile masks my impatience

(some things are hard to change).

I relive many moments

but this time

I do better

(yes, I am going straight from London to Paris– it’s so close, you know!)

I’m a little late,

but still

I’d like to think

I’m becoming the person

my mother always thought I could be

 

A Swift Current Dancing in the Dark Thought about how we treat the elderly

Adele Springsteen, age 90, dances with her son, March 2016, Madison Square Garden “She’s Still Got The Moves” he shouts with pride

Cover Me music and lyrics by Bruce Springsteen Copyright 1984 Bruce Springsteen. All Rights Reserved

There are several complete videos of Bruce Springsteen dancing with his mother Adele available on YouTube–the one excerpted above was recorded by markit aneight

Interlude

A Swift Current Interlude Don't underestimate the value of Doing Nothing...

Woman in the Countryside by Vuillard 1897-1899 Private Collection

Don’t underestimate the value of Doing Nothing,

     of just going along,

listening to all the things you can’t hear…

                                                                  ~ Winnie the Pooh by A. A. Milne
 
 
 

During the last few weeks, several people have asked: Did you write this summer?

The answer is yes, and no.

I wrote– but not about my mom. Of course, I thought about her every day. Some memories brought smiles; some brought tears.

But I didn’t commit any of it to paper.

I gave myself the summer off.

When I started writing A Swift Current, I wanted to share my experience with dementia and the death of an elderly parent—personal revelations which, at the time, I hadn’t seen discussed in any other forum.

And so for the last three years and 40 essays, I have shared our story here– the ravages and grace of dementia; our renewed and strengthened bonds; my searing grief over the loss of her.

My grief shocked me. I had thought her death would be a welcome relief—she was, after all, 95 years old. She had dementia. But after her death, the numbness of the initial months blossomed into an unexpected anguish.

I missed her–dementia or no dementia.

And while the intensity of my emotions has evolved, I still stumble. Five years later, I feel an unrequited longing I never imagined. I frequently replay scenes from our lives-the teenage years; the career years; the dementia years—

I see it all so clearly now.

We have so many expectations of our parents. When we’re young, we want them to be different. When they’re old, we want them to be how they always were.

During my mom’s decade of dementia, I slowly grew in my understanding—and even acceptance– of her illness. Despite her confusion and fantasies, turmoil and anger, I still saw the core of my mother in her fading and fragmented being–even near the end of her life. I wish I hadn’t been so frightened of her disease in the early years. I wish I could have accepted who she was, and who she was becoming.

My friend Kathleen Novak captures my hard-won perspective in her poem Clarity, written when her father first began to show signs of confusion. As I resume writing future essays for A Swift Current, I offer you Kathleen’s thoughtful, generous, realistic view of an aging parent—with remarkable Clarity.
  

He is ninety after all, so

not everything is in bright focus, like a photo snapped mid-afternoon,

not everything looks as clear as that, for example,

he may not know whatever day it is today,

possibly a Thursday, unless that was yesterday

and today is Friday, or he may not know exactly

when he is to fly out to visit his son

though he wrote it down somewhere and he will find it

because he remembers having that piece of paper

along with the monthly bills and statements, the insurances and taxes

he has those written down too, the amounts paid and due

but there is this blur of dates and times, of numbers and facts

 

He is ninety after all, though

certain particulars still remain in bright focus, for example,

a great good game when he wins, the memory

of everything important that ever happened in any decade

and the way it all stacked up, the rises and falls, the girls

he left for other girls, the time he got meningitis in Africa

and later when his daughter smashed the car,

when his son became a doctor, the first time he saw his wife

and asked her to dance and the night his father-in-law died during a storm,

and years before, when he looked for the babies’ graves with his old mother,

 

there’s no blur when it comes to the pure blue of an afternoon sky

or the threat of snow again, those hovering white clouds,

who is true and who is not, whose heart is open and whose is not

at ninety you have a different kind of clarity

at ninety, after all that,

you know what you know.

      ~Kathleen Novak

A Swift Current Interlude

You Know What You Know…Madam Vuillard and Her Daughter by Edgar Vuillard 1893 Scottish National Gallery of Modern Art

Clarity, copyright 2011 by Kathleen Novak

Winnie the Pooh
, by A. A. Milne Copyright 1961 the Disney Corporation; original copyright Dutton Books

Bittersweet Symphony

A Swift Current Bittersweet Symphony


Vuillard– Child at the Door, Yale University Art Gallery 

I listened to her message;

the social worker’s voice

–always calm, friendly, familiar–

now imbued

with anxious insistence

Please call

ASAP

Your mother is fine but

We need to speak with you today!

I knew my mother wasn’t fine

but I didn’t expect the latest twist:

Hallie, I have upsetting news–

your mother is screaming

night and day.

She is disrupting the other residents. No one can rest. They need their sleep so they can get better!

We have no choice, Hallie—

we need to move her—

TODAY!

My warrior mother was back.

But they were moving her–

and I knew

this call

was the beginning of the end.

From the day she entered the nursing home,

my mother had lived in the same bright, cheery room

right by the front door.

For more than a decade, she waved to visitors and watched the activity–

with her prime vantage point,

she even thought she was a member of the staff–

but I haven’t seen a paycheck yet!

And now she was losing her post.

We are moving her to a different wing where her screaming won’t bother the other patients.

I don’t understand. It won’t bother them? Won’t she still upset people?

They won’t notice. They are too sick to notice.

I’m confused. They are too sick to notice a screaming woman? What am I missing?

I’m sorry, Hallie; but this is not up to you;

We are not asking you;

We are telling you.

Until that moment,

I had done everything I could

to avert a move from her room.

I knew

for dementia patients,

routine is paramount–

every day; every thing;

exactly the same.

And I knew my mother;

right or wrong,

I believed

a move would kill her.

For more than a year,

the prospect of a move loomed over us

for one simple reason–

my mother was running out of money.

I had paid the nursing home bills from her savings, then a small inheritance, and finally from the sale of her house.

At first, I didn’t worry;

I thought the proceeds from our family home would sustain her for the rest of her life.

And it did—for close to a decade.

But as the balance steadily declined;

I grew uneasy.

I stopped opening bank statements. I knew what they said.

And what they didn’t say.

Where will we get the money?

The obvious answer; we wouldn’t. We would spend her assets; apply for state assistance. Some people call it welfare. In California, it’s called Medi-Cal.

But Medi-Cal would not pay for her bright, cheery room; she would be moved to another location on the premises—

her routines–

her modest little corner of the world–

gone.

I had already taken away her beloved home. I could not do it again.

My solution:

I paid the bills

from my savings;

negotiating with myself

over and over and over again;

what is fair–

how much is enough–

her welfare vs.

my future.

Night after sleepless night

I battled my conscience–

If she moves to get Medi-Cal

and doesn’t survive

Tossing

I could not bear it

Turning

she paid for my education–

bought my first car–

Tossing

if I move her

Turning

and she dies

Tossing

I’ll look into Medi-Cal…

Turning

NEXT year!

But I can’t

Tossing

move her

Turning

now–

Tossing

not

NOW…

Hallie,

we are moving your mother;

we are not asking you;

we are telling you.

And Hallie,

her new room is Medi-Cal eligible;

I am sending the forms.

Please Hallie,

you’ve done enough.

It’s time to fill out the forms.

We will help you any way we can.

Now hold on, the charge nurse needs to talk to you…

When are you coming?

In a few weeks–right after jury duty.

Good. You need to come.

Is—it—imminent?

No, but your mom has entered the last downward spiral. That’s why she’s screaming.She has entered the last phase. Then she will go into the quiet period.

The quiet period?

Haven’t we had the quiet period?!

No. In the quiet period, she will lose everything—

eating, speech,

everything.

How long will this quiet period last?

Well, your mother is very healthy. It could be two to three years.

(Oh, please God, no!)

I have my plane ticket.

Good.

It’s a bittersweet irony;

despite sleepless nights,

willful determination and sacrifice

to keep her in her room;

at the end

money had nothing to do with it.

Her disease had taken her to a place

where no bright, cheery room could camouflage the horror in her brain.

We were descending down the spiral of disease—

entering the years of quiet hell.

They had no choice;

they moved her.

But still

I was not ready;

those Medi-Cal papers became

another envelope I could not open.

A few weeks later

I finally studied the forms.

We were allowed to spend her remaining money on certain essentials;

a burial plot, for example.

We would be allowed to keep a small amount in the bank;

And I would need to find her original Medicare card (copies not accepted).

(Wow, the original card… I know I’ve seen it somewhere…).

The next day

the phone rang.

The caller ID

nursing home.

For years, I had eyed those words with trepidation. But they had called so many times during the last few weeks

I did not hesitate as I lifted the receiver.

And then I heard her voice.

It was not the social worker. It was not the charge nurse.

It was the new head nurse;

the new head nurse

who had never once called.

And in that moment

I knew;

my warrior mother was dead

(oh please God…).

Minutes later,

the phone rang again:

the charge nurse–

Oh Hallie! We always get a text when someone dies. I almost fainted when I saw the message. My husband had to hold me up. Your mother! I can’t believe it! I saw her– just a few hours ago–she was the last person I saw before I left. I know what I told you…I believed what I said…I am so deeply sorry…

It was my turn to be the rational one.

It’s alright. I know you did everything you could. It’s time.

And here’s the catch:

I believe it.

Looking back, I realize,

I spent a decade

trying to orchestrate the impossible.

I was tormented about her care; a move; no money;

And in my shattered vision

I lost sight of the most basic tenet of this vicious disease;

I could control nothing.

Dementia had eviscerated my mother;

it promised only bitter years of quiet hell

with no more sweet moments to assuage me.

And even the most compassionate, experienced professional could not anticipate its path nor ease our fall.

Only three weeks after the move,

the phone rang;

my worst fear;

my urgent prayer;

my mama–

a warrior to the end.

Alleluia.

A Swift Current Bittersweet Symphony

Vuillard, The Artist’s Mother– Minneapolis Institute of Arts

The title Bittersweet Symphony comes of course from the song of the same name by the Verve. I leave it to you to research the lyrics and determine if they apply…

For Us (I will carry it on)

A Swift Current For US (I will carry it on)

Edouard Vuillard– 1891-1892– Private Collection

 

An hour often passed without their speaking. The shared quiet fell over them, binding them more tightly than any conversation could.

~  Jhumpa Lahiri The Lowland

 

Twenty-four hours ago,

my mother did not know me.

Now we sit

side by side;

holding hands.

Our words

drift into the air;

a deep breath;

a slight smile.

Tengo hambre, she says,

surprising me

with the lost language of her childhood.

Our silence surprises me too;

luscious relief

after years of dementia’s

nonsensical tales;

bitter accusations;

angry recriminations.

Our silence;

a tender reminder of

long ago afternoons

home from school;

the two of us sitting

at the formica table;

Chips Ahoy and milk.

Day after day,

we sat in silence as

I tried to figure out

what the nuns expected;

what the other kids wanted;

why was I so scared.

She knew

not to say a word

until I was ready.

And in our daily

interlude,

I felt safe.

Now, it is my turn

not to say a word;

we watch the birds;

I rub her shoulders;

she cradles her cheek in her palm.

As I leave

she murmurs

te quiero.

I love you too, mama

(is this

the last time

you will know me?).

But in the months left to us,

she knows me

every time.

Some days

animated–buoyant;

other days

struggling–silent;

but most always

affable–sweet–

even playful.

Her consuming turmoil and rage–

dementia’s cruelest gifts–

simply recede from view.

I am thrilled.

One day I bound into the nurses’ office—

she is so much better!

Scowling,

the new head nurse rises from her chair,

her words like bullets:

She is worse, much worse.

It is counterintuitive, I know–

but when she battles us,

when she cries out,

it is because

she knows what is happening to her—

she knows.

The fierce, combative woman–

the anguished, angry woman—

that was your Mother

fighting to get out.

This docile, compliant woman–

You think she is better.

But she is worse.

There’s just no more battle in her.

She is done.

The disease has finally won.

It always does.

I was stunned.

My sweet mama

wasn’t so sweet after all;

she was done.

For a decade

I’d been embarrassed by her behavior;

bruised by her temper;

I should have been cheering her on.

And now,

someone has finally told me

what is happening to my mother.

She has lost her ferocious battle;

I am losing

her.

It is time;

I have to let her go–

for her–

for me.

Once again

a song on the radio

becomes my anthem

and my balm.

The lyrics echo still–

Every day that will pass you by

Natalie Maines’ crystalline voice–

Every name that you won’t recall

Martie Maguire’s scorching violin–

Everything that you made by hand

their refrain–

Everything that you know by heart

my silent vow

to you

to me

for us

And I will try to connect

All the pieces you left

I will carry it on

And let you forget.

And I’ll remember the years

When your mind was clear

How laughter and life

Filled up this silent house

 

A Swift Current For Us (I will carry it on)

Edouard Villard, After the Meal, c. 1900, Musée d’Orsay, Paris

 

The Lowland, a novel by Jhumpa Lahiri published by Alfred A. Knopf Copyright 2013 by Jhumpa Lahiri all rights reserved.

Silent House from the Dixie Chicks, Taking the Long Way, Writer(s): Natalie Maines, Neil Finn, Neil Mullane Finn, Emily Robison, Martha Maguire Copyright: Chrysalis Music Ltd., Woolly Puddin’ Music, Chrysalis Songs, Scrapin’ Toast Music all rights reserved.

 

Privilege

Summary: Discussions of eldercare issues are often imbued with a sense of burden and pain. While in no way do I intend to downplay the issues confronted by the elderly and their caregivers, I strongly believe the last decade of my mother’s life taught me what matters. Amid difficulties and struggle, our bonds became stronger and deeper. I am honored to share my perspective to Caring Across Generation’s #blog4care as together we address the needs of our elder loved ones. For more information, http://www.caringacross.org

 

A Swift Current Privilege, My Visits Were for Me

Edouard Vuillard– Mother and Daughter…

 

…what caring for our mothers really taught us…this part of life that so many people are afraid of…the act of carrying on a conversation with someone who can’t speak to you — and being there when they are dying—

there was a sense of privilege…and a sense the ‘Gosh, I was so afraid of this, I didn’t want to do it; I didn’t want to be here.’

But being here is starting to feel like a good thing, a good part of life—

something that we avoid in this culture that actually is a rich experience, albeit painful; it’s actually so much a part of life and so many people never get to be in it.

~Will Scheffer, interview on Fresh Air, National Public Radio

 

Your flight to Los Angeles has been cancelled.

What? No!

We’ve put you on the next flight. You’ll arrive at 3 PM.

But my mother…

I started to cry.

I have only a little time this trip–a few extra hours–this trip is for work…

and

now

I won’t get to see my mother.

The American Airlines agent looked down, tapping her keyboard. She placed a call—exchanged a few words– printed a boarding pass

You’re on the United flight

in one hour;

Find the tram–

Don’t stop for anything–

Run!

Until that moment

I thought my treks to the nursing home

were for my mother.

Bearing flowers and chocolates,

I’d brighten her day;

check on her care;

play the loving daughter.

In tears at the airline counter,

I realized;

my visits were for me.

And for the next ten years

I took joy from those visits

in spite of–

because of–

our cacophony of emotions;

every visit

a wild ride between

tenderness and anguish–

endearments and allegations–

astute observations and twisted fantasies—

all with roots

firmly planted in our past.

As my mother lost the ability to edit,

her words were often not

polite;

appropriate;

acceptable.

She said what she thought–

And I began to know my mother;

unfiltered;

unequivocal;

real.

But throughout our decade of dementia, I could count on one thing; she always welcomed me with outstretched arms and a redeeming grin —

(I knew it would be you! I had a feeling you were coming! I want a hug!)

until

the day

she didn’t.

I’d driven to the nursing home from the airport. My mother was in the dining room. She’d just finished lunch.

I stood in front of her, smiling broadly

Surprise!

She gazed up at me. A tentative curl of her lips; a slight nod of her head:

Hello.

I always knew this could happen.

Do you know me?

Yes, I know you. You’re Irving Berlin’s daughter!

Well um, um, no,

I’m Hallie.

That’s funny. I have a daughter named Hallie.

Yes! That’s me. I’m your daughter– Hallie!

No.

I would know Hallie.

My Hallie is

not you.

I always knew this could happen.

But I was determined. I’d travelled 3000 miles and I wanted my moment—gleeful recognition, tight embrace, beaming smile.

I tried again.

Well, what if we played a game? What if I answered questions only your Hallie could answer?

I do not want to play that game.

You would think, after all these years, I would get it.

I didn’t get it.

And so–as if words could release her– I talked. Her responses were vague; cool; reticent. She told me that she liked the facility; she was learning new things, like how to eat with a fork. She’d never used one, she said. It was difficult, but she thought she could do it.

I was relieved when one of her friends arrived;

(look mama, she knows me!).

As her friend and I started chatting,

my mother became exasperated:

Would you two please leave!

But mama, I just got here. I can visit. I have all day!

LEAVE!

Her friend implored

Please don’t go; she loves you so. She talks about you all the time.

GO!

She doesn’t mean it. Don’t go…please don’t go…she will be so sad…

GO NOW!

I left.

I wandered around the hotel; watched a movie;

and realized

she made sense.

A stranger acting as though she knew you;

insisting she’s your daughter when

clearly she is not.

And the imposter wouldn’t leave–

terrifying!

I would tell me to leave too.

I returned the following day. She was sitting in the dining room.

Do you know me?

Yes! You are the Archangel Gabriel!

Her next words were gibberish; the invented language of an infant; startling sounds from a 94 year old woman.

I left.

On the third day, I found her sitting with her nurse;

she looked at me steadily;

her eyes did not light up;

her arms did not reach out.

Do you know me?

Yes, she said,

you are my baby.

Her nurse turned away.

I stayed.

My visits were for me.

 

My Mother has done it. She has made me see what she wanted me to see…

Together we are quiet and still.

                                                                        ~Anna Quindlen, Every Last One

 

A Swift Current Vuillard In The Shade My Visits Were for Me

Edouard Vuillard– In The Shade

 

Edouard Vuillard, Mother and Daughter against a Red Background, 1891, Private Collection. Vuillard painted this image when he was just 23 years old.

The Fresh Air interview with television producers Will Scheffer and Mark V. Olsen originally aired on December 23, 2013 on National Public Radio. Scheffer and Olsen produced the HBO’s series “Big Love” and ”Getting On”. Their fascinating interview (entitled ‘Getting On’ With It: A new HBO Show Doesn’t Tiptoe Around Death’), is available at the Fresh Air website and as an iTunes podcast. Interviewer Terry Gross, Scheffer and Olsen explore several aspects caregiving for aging parents, as well as for your partner. According to the interview, while they were producing Big Love, Olsen flew from LA to Nebraska every other Friday night to visit his ailing mother, flying back to LA on the 5 AM flight Monday morning; Scheffer also made the Friday to Monday visits to his ailing mother in NYC alternate weekends.

Every Last One by Anna Quindlen Copyright 2010 by Anna Quindlen Published by Random House Group, a division of Random House, Inc. All rights reserved.

Edouard Vuillard, In The Shade, 1907

 

Little Did We Know

Missing poster

Missing Poster–displayed on a neighborhood lamp post– Photo by Hallie Swift

In a bustling airport,

I watched the scene unfold;

an elderly woman

surrounded by police.

She was traveling to see her son.

She did not know where he lived.

She did not know her name.

Clutching a policewoman’s hand, she cried

Please don’t leave me!

I moved on.

Why on earth is she traveling alone?

I thought;

What an irresponsible son!

Little did I know.

Across the country

my mother was covering up

signs of emerging dementia.

We attributed her occasional slip to

forgetfulness;

laziness;

or an annoying

ploy for attention.

And my clever mother always

smoothed over missteps;

deflecting any doubt;

Mama, what did you say?

Oh, I was only joking!

And with that assurance,

we moved on.

Just a few years later,

the doctors gave those missteps a name–

dementia–

but beyond their diagnosis,

the professionals

seemed unwilling

to explain what was happening.

And when I asked too many questions,

their answers were imbued with impatience;

peppered with subtle disregard.

I remember

during the first weeks of our nursing home life;

a social worker nonchalantly commented:

Well, that’s your mother’s Sundowner’s Syndrome.

I had no idea what he was talking about.

When I asked for an explanation, he seemed incredulous

You know, he said, in the afternoons, she gets more confused.

She does?

Yes, she’s more confused in the afternoon. It is called Sundowner’s Syndrome.

Later

the meaning of sundowner’s was dramatically revealed during a visit with my uncle.

My uncle and aunt–

always impossibly charming—stylish–even glamorous–

in my adoring eyes, and

in their respective 90th and 93rd years,

they still were.

I visited their new assisted living facility; assisted or not,

they appeared unchanged—

my handsome, jovial uncle; my gracious, proper aunt–

compared to the typical roller coaster visit with my mom,

this was easy.

But as the afternoon light shifted, deep shadows fell across my uncle’s chair.

Without warning,

he looked anxious.

He glared at me;

his face etched with fear.

His expression menacing, he demanded

Who are you?

I froze.

My aunt buried her head in her hands;

Oh no, oh no. This is so frightening.

And as if a loud voice could clear his mind, she shouted

It’s Hallie; it’s Hallie; Mike’s daughter, Hallie!

Who?

Your brother Mike—Mike’s daughter– Hallie!

I don’t know any Hallie. Are you my wife?

My aunt raised her voice; it’s Mike’s daughter! Mike’s daughter, Hallie!

Mike didn’t have any daughters.

Sundowner’s Syndrome;

like film noir–

shadows appear sinister; mysterious; threatening;

and the demented brain reacts.

In a flash,

the patient responds to danger;

fear sets the stage.

A Swift Current Dark Shadows

Dark Shadows– Photo by Hallie Swift

Just as startling,

as the drifting light again enveloped my uncle’s chair,

he snapped out of the sorcerer’s spell–

Hallie,

he smiled wanly,

come see us again soon.

And there you have it–

my mom–

my uncle—

a face staring from a missing poster

or lost in an airport–

each completely different;

each exactly the same.

They call it dementia;

they use clinical words and vague terminology;

but they don’t tell you what to expect;

they simply don’t know.

Much later

as the disease approached its final stages,

my mother would sit for hours in the garden;

cradling her face in her hands.

She’d taken to wearing a cap over her unwashed hair—unwashed because she wouldn’t let anyone touch her;

she’d scream if we tried.

Words fumbled; sentences incomplete; her thoughts quickly evaporated into silence.

It appeared

we had finally reached

dementia’s steepest slope;

little did we know.

Right before her last birthday,

my mother re-emerged;

back in the sun.

A  Swift Current my mother's 95th birthday

Reading cards on her 95th birthday Photo by Hallie Swift

Sporting a new haircut,

she was ebullient; effusive;

brimming with excitement for her 95th year.

My sister and I were wary; her mood could change at any moment. Just the three of us gathered in the garden—bestowing balloons, presents, cake,

and photo birthday cards with images from her youth.

That day

my mother’s joy never abated; she was clear, content and even more beautiful than the pictures on the cards.

A Swift Current my mother's 95th birthday

“That’s me!” My mother seeing her picture on a birthday card–Photo by Hallie Swift

As the afternoon light slowly shifted, she studied us closely.

Nodding slowly,

a faint smile at the corner of her lips,

she quietly proclaimed

I am so pleased.

As we returned to her room, she gave her best Queen Elizabeth wave to her fellow residents in the dining hall, calling out

Thank you for coming to my party!

The nursing staff approached my sister and me. They shared our euphoria, confiding that they were astonished by what had transpired.

Just a few weeks earlier, they were not sure she would make it to her birthday. Certainly she would not understand what was going on.

Instead she surprised all of us with a transformation

no one could anticipate.

She gave us

her old self;

a radiant last birthday;

reminding

all of us

once and for all

how little we know.
      

A Swift Current on her 95th birthday

“…observe her closely…it is almost as though she will be gone shortly…” Quote from Octave Mirbeau…Photo by Hallie Swift on my mother’s last birthday

The Octave Mirbeau “Observe her closely…” quote comes from his description of Claude Monet’s Study of a Figure Outdoors, Facing Right ,1886, in the collection of the Musee d’Orsay, Paris