And She Was

A Swift Current The latest essay And She Was (it was not the long goodbye because she was not gone)

Eduard Vuillard Madame Vuillard at the Dinner Table 1903 Oil Private Collection

Every time I visited the nursing home, I never knew which version of my mother would appear—

buoyant, funny—

incisive, wise—

bitter, raging—

sometimes I’d see all of them in a single afternoon.

But through all the permutations, I’d always see my mother, even if it was only a fleeting glimpse. She was unraveling, bifurcated, stripped of all social masks

but it was still her. All of it. Her.

Our years were not the long goodbye

because she was not gone.

Throughout our decade of dementia, she was still my teacher. Our roles had shifted, but she was still the mom. If I listened, I could hear her guide me—even at times with humor and patient understanding

I love you, Hallie

I love you too, Mama

I love you for your happiness—
and your volatility.

What? Mama! My volatility?

Well, Hallie, you do know you have a tendency to explode.

My tendency to explode. I will never forget that moment. And with her succinct observation echoing through the years, I work to keep my temper in check.

Sometimes her counsel was more direct.

I visited the morning after a friend’s wedding. My eyes felt like sandpaper. My throat was parched. My stomach was doing backflips.

But she was deep in the clutches of dementia. Surely she wouldn’t notice.

She noticed.

You know, Hallie. Alcoholism is a terrible problem in our family. And I don’t like what I see.

But over the years, words became more scarce.

For hours, we’d sit side by side; enveloped in silence–

a deep breath, slight smile, an occasional word drifts into the air.

But even then, our silence was a tender reminder of lessons long ago–the two of us sitting at the formica kitchen table- an after-school feast of Chips Ahoy and milk.

Day after day, we’d sit in silence as I tried to figure out

what the nuns wanted;

what the other kids expected; and

why was I so scared.

She knew not to say a word

until I was ready.

She made me feel

safe.

And now,

it’s my turn—

I bring a treat;

we watch the birds;

she cradles her cheek in her palm.

As I start to leave,

she surprises me with the lost language of her childhood,

te quiero, she says

I love you too, mama.

 

A Swift Current-the latest essay And She Was--our years were not the long goodbye--because she was not gone

Vuillard–In the Garden–1899–Pushkin State Museum of Fine Arts

But no matter how hard I try,

this is different;

I cannot make her feel

safe–

the disease is in control.

And as it progresses,

I witness yet another version of her.

Hostile, combative, even frightening,

this woman allows no one near

(be careful she’ll scratch you!).

Her nurse tells me this is my mother’s last stand. She is battling the ravages of her brain with all the fight she can muster. She is a hero—this angry woman–this woman is my warrior mother.

Her nurse also warns

She might not make it to her birthday

but even if she does,

she won’t know what’s going on.

But right before her big day,

there is another metamorphosis–

ebullient, effusive,

this woman is brimming with excitement for her 95th year.

On her birthday,

my sister and I bring all the ingredients for a happy day

(as if we could make it so).

We eat cake–

unwrap presents–

exclaim with glee.

As the afternoon light slowly shifts,

she studies us

with penetrating, almond-shaped, hazel eyes.

Nodding slowly,

a faint smile flickers at the corner of her lips,

she quietly says

I am so pleased.

As we take her back into the nursing home,

my mother waves her arms high in the air

shouting to the residents gathered for dinner

Thank you for coming to my party!

The nurses rush up to us—

we are euphoric, exhilarated, exhausted;

not quite believing what has just transpired.

I am so pleased.

I never expected to find joy

in the halls of a nursing home;

I never expected to see my mother so clearly

or to love her so much.

For more than a decade,

we sat

side by side

in the garden—

bitter, raging-

buoyant, funny-

incisive, wise—

I never knew which version of my mother would appear.

But I came to understand

this kaleidoscope was my mother —

even if

I didn’t always like what I saw.

And with this revelation,

I finally embraced those years

exalting in the time we spent together;

my chance

to finally show her

all I had never said.

I love you too, mama

I love you

for your happiness

and for your volatility.

 

 

The world was moving, she was right there with it and she was
The world was moving, she was floating above it and she was
Joining the world of missing persons and she was
Missing enough to feel alright
And she was

 

A Swift Current--the latest essay And She Was-our years were not the long goodbye because she was not gone

Vuillard–Marie in the Garden–Private Collection–1893-Oil on canvas

 

And She Was, written by Chris Frantz, David Byrne, Jerry Harrison and Tina Weymouth, copyright Warner/Chappell Music Inc.  All Rights Reserved

Advertisements

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

Comfort and Joy

A Swift Current Remember the elderly at Christmas

My friend’s mom and the excitement of Christmas…

 

I have shared this story before. But any doubts about a reprise were erased when I received this card from one of my friends. Her mom picked out the photo and asked her daughter to include it with her greetings.

When I look at the expression in her eyes, my heart just melts.

I remember my mom’s nursing home at Christmas. The atmosphere virtually pulsated with anticipation. Holiday décor covered every available surface. Young schoolchildren sang carols. Unfamiliar visitors wandered the hallways.

The excitement—and tension–were palatable.

My mom’s fellow residents were lucky. The head nurse made sure everyone would receive a gift. Under her watch, no one would be disappointed on Christmas morning.

And so now, as we make our lists–and check them twice–let’s follow in the footsteps of my favorite head nurse. Please remember the elderly men and women in your community…

Here is our story:

Thank You For Remembering Me

A tall thin woman slowly edged her walker into my mother’s room. Her long silver hair was pulled in a braid, revealing bright blue eyes and high chiseled cheekbones

Are you Hallie Swift?

Yes, I’m Hallie…

She reached into her pocket, grasping a shiny gold lipstick tube

I’m Dorothy

She raised her arm high in the air;

giggling as she waved the lipstick back and forth;

her voice light, crisp, melodic

Oh Hallie, I just love my lipstick. Thank you for remembering me! Merry Christmas!

In her monthly newsletter

the head nurse had issued a plea—

she needed

Secret Santas

for residents with no families;

she wanted everyone in the nursing home

to find a present under the tree.

My friends and I discussed our gifts

…chocolates and sweaters and books with large print and stuffed animals and baseball caps and comforters and…

Lipsticks for the ladies!

Lipstick?

Yes, my friend urged

…after all, you never lose your vanity!

But let’s not give just one lipstick–

let’s get lipsticks for everyone!

So we asked friends coming to our Christmas party–

Please bring a lipstick for the ladies!

And with that, a tradition was born.

Year after year

we were showered with

Estee’s gorgeous reds, Chanel’s shimmering corals, Bobbi’s hot pinks;

small rectangular boxes adorned with bright paper and festive ribbons;

our own Christmas cornucopia.

We collected so many lipsticks;

I needed an extra suitcase for

the lipstick express!

On Christmas morning

each resident received

a beautiful little package.

A Swift Current Christmas lipstick for the ladies!

Lipstick! Photo by her granddaughter

 

The head nurse was effusive:

my residents are so happy–

And when my residents are happy, my nurses are happy–

And when my nurses are happy…

(her eyes glistened)

Well, girls, what can I say?

you made our Christmas!

But the truth is: they made ours.

For many of us, the trip to buy lipsticks became a defining moment of our holiday season. One friend told me she and the Bloomingdale’s saleswoman shed tears as they selected colors, then added every powder, polish and perfume sample in the department.

A Swift Current Remember the elderly at Christmas

Wayne Thiebald, Lipstick (detail), 1964 (the artist is now age 95)

A small rectangular box;

a simple gesture;

the electricity of Christmas morning;

a gift

under the tree–

bright colors;

big smiles;

Dorothy.

Silver braid

melodic laugh

waving her lipstick high in the air

Are You Hallie?

I just love my lipstick!

Thank you for remembering me.

MERRY CHRISTMAS!

 

A Swift Current Christmas Surprise-Lipsticks for the Ladies

Thank you for remembering me! Photo by her granddaughter


I was so moved when a reader in Arkansas took lipsticks last year to her local eldercare facility. She reports the staff was surprised and grateful for her gifts. She plans to do it again this year.

The beautiful women in the photos are the mothers of two of my friends. I deeply appreciate their permission to use these photos, which say more than I ever could.

Thank You For Remembering Me!

A tall thin woman slowly edged her walker into my mother’s room. Her long silver hair was pulled in a braid, revealing bright blue eyes and high chiseled cheekbones

Are you Hallie Swift?

Yes, I’m Hallie.

She reached into her pocket, grasping a shiny gold lipstick tube

I’m Dorothy

She raised her arm high in the air;

giggling as she waved the lipstick back and forth;

her voice light, melodic

Oh Hallie, I just love my lipstick. Thank you for remembering me!

Merry Christmas!

In her monthly newsletter,

the head nurse had issued a plea—

she needed

Secret Santas

for residents with no families;

she wanted everyone in the nursing home

to find a present under the tree.

My friends and I discussed our gifts

…chocolates and sweaters and books with large print and stuffed animals and baseball caps and comforters and…

Lipsticks for the ladies!

Lipstick?

Yes, my friend urged

after all, you never lose your vanity!

But let’s not give just one lipstick–

let’s get lipsticks for everyone!

So we asked friends coming to our Christmas party–

Please bring a lipstick for the ladies!

And with that, a tradition was born.

Year after year

we were showered with

Estee’s gorgeous reds, Chanel’s shimmering corals, Bobbi’s hot pinks;

small rectangular boxes adorned with bright paper and festive ribbons;

our own Christmas cornucopia–

we collected so many lipsticks;

I needed an extra suitcase for

the lipstick express!

On Christmas morning

each resident received

a beautiful little package–

Santa’s surprise!

A Swift Current Christmas lipstick for the ladies!

Lipstick! Photo by her granddaughter

The head nurse was effusive:

my residents are so happy–

And when my residents are happy, my nurses are happy–

And when my nurses are happy…

Well, girls, what can I say?

you made our Christmas!

And they made ours.

For many of us, the trip to buy lipsticks became a defining moment of our holiday season. One friend told me she and the Bloomingdale’s saleswoman shed tears as they selected the colors, then added every powder, polish and perfume sample in the department!

A small box;

a simple gesture;

the electricity of Christmas morning;

a gift

under the tree–

bright colors;

big smiles;

Dorothy.

Silver braid

melodic laugh

she waves her lipstick high in the air

Are You Hallie?

Thank you for remembering me.

Merry Christmas!

A Swift Current Christmas Surprise-Lipsticks for the Ladies

Thank you for remembering me! Photo by her granddaughter



A reader in Arkansas has decided to be “Hallie’s Lipstick Girl” (her words) for her local eldercare facility. Thank you for spreading the cheer! And Merry Christmas!

The beautiful woman in the photos is the mother of a friend from grammar school.  Thank you for permission to use these wonderful photos and thank you to my friend’s daughter for taking such gorgeous pictures.

What A Tale My Thoughts Could Tell

A Swift Current What A Tale My Thought Could Tell

Vuillard Young Woman in a Room 1892-1893 The Hermitage, St. Petersburg

When you reach the part

Where the heartaches come

The hero would be me

But heroes often fail

                    ~Gordon Lightfoot

Saturday night

New York City;

jazz on the stereo;

the nursing home on the line:

-she’s agitated the doctor’s coming the meds aren’t working we need you to know her meds stopped working the doctor’s on her way we need you to know-

Sinking into the sofa,

I asked my husband

Why do people live so long?

As the words crossed my lips

I shuttered;

I had spoken the unspeakable

Why?

Years earlier,

my mother had written a living will;

in her own hand

she spelled out what she wanted.

She was unequivocal;

she believed in

quality of life

not quantity of years.

No extraordinary means,

she wrote,

but it had little meaning

when her mind disappeared.

Perhaps

her words could guide us

through end-of-life decisions–

but we never got that far.

Our decisions resided in the land of

of the grey;

how do we care for our demented mother
when we know
she would not want to live like this?

At the beginning,

the head nurse had proclaimed

Dementia patients in skilled nursing

live longer–

they have no worries…everything is done for them…!

Her words–meant to instill confidence–

begin to haunt me;

and I start to see

the nursing home itself as

extraordinary means;

bestowing years

my mother did not want.

During my visits,

people would say

Your mother is so proud of you!

and I’d wince–

I could not escape

the beating drum

the insistent rhythm

the irrefutable fact

I failed you.

Even after her death

I could not let go

(I should have taken you home, mama–

in the beginning,

when we had the chance—

home, mama

like you wanted–

no extraordinary means,

no unwanted years!)

And now

I see my friends

enter the fray;

doing battle

for their elderly parents.

One by one

I watch them struggle

with the same unmerciful choices.

From the sidelines

I see heartache; confusion; doubt.

And I realize

it’s the daughters and sons who try to do it all

who feel like they are doing it all wrong.

Where my friends feel gnawing frustration and guilt,

I see only unselfish grace and goodness.

A friend checks her watch; it’s time to call her dad. He’s lost after the recent death of his wife-his sweetheart. Every evening my friend patiently encourages him as they select his TV programs for the night. With tears in her eyes, she gently cajoles him (You’ll love Bob Newhart, Daddy…) as she lifts him up again and again.

A friend’s father will not let his favorite jacket out of his sight. After much searching, she purchases a similar jacket, slips it into his room and secretly launders his treasured garment. He might not be fully aware of her resourcefulness and ingenuity, but I’m sure he knows her love.

A friend joins me for a quick bite at the end of a long work day; our visit is brief; her 95 year old mother lives with her now, and will be despondent if her daughter doesn’t return home soon.

And this summer, on the 5th of July, a friend tells me she spent the entire previous evening on the phone with her 90 year old mother. Her mom was upset by the sound of fireworks. Mother and daughter talked long into the night.

You spent your entire 4th on the phone?

Well, yes…she needed me…

But you gave up your celebration…

I did…but…you know…

you do what you can do.

You do what you can do.

And with her words,

I let go.

Four years after my mother’s death,

the 5th of July, 2014;

my independence day;

my absolution.

You do what you can do.

The nursing home or

moving her home;

the choices were perilous.

We chose the nursing home.

It was not the right answer.

It was not the wrong answer.

It was our answer.

It gave us

long years.

It gave us

each other.

Your mother is so proud of you.

Yes,

she is.

You do what you can do.

Everybody loses the thing that made them. That’s how it’s supposed to be in nature. The brave stay and watch it happen. They don’t run.

                                                              (Beasts of the Southern Wild )

A Swift Current What A Tale My Thought Could Tell

Madame Vuillard and Annette, 1920, Private Collection

The title and opening lyrics are from the song If You Could Read My Mind by Gordon Lightfoot, copyright 1969 by Early Morning Music (SOCAN), all rights reserved. One of my all-time favorite songs, Lightfoot has stated “it’s about peace through acceptance” (Gordon Lightfoot Songbook copyright 1999 Warner Bros Records Inc. and Rhino Entertainment Company).

The story of the jacket can be found on the WordPress blog Let’s Talk About Family. When I first started writing these essays, I avoided other writing on the topic; however in recent months, as exploration of my mom’s story approaches a conclusion, I have found several probing, poignant blogs by people who share their unfolding experience with dementia. Here is the link for Lori’s writing: http://letstalkaboutfamily.wordpress.com/2014/06/28/lunch-with-dad/

=
Beasts of the Southern Wild is a 2012 Oscar nominated film, screenplay by Lucy Alibar and Benh Zeitlin

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…

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