Double Take

You say you will love me
If I have to go
You’ll be thinking of me
Somehow I will know…

 

A Swift Current Double Take whenever i see an owl, I see her

Halfway Through the Wood… Photo by Sylvia Ferrell-Jones

A quiet winter Sunday–

a charming photo on Facebook—

an owl peaks out from a tree.

I close my eyes

take in my breath

(Mama!).

I want to thank my friend for

this fleeting moment—

this unexpected gift

but

“my mom LOVED owls”

is all I can muster.

I don’t add

her small collection of ceramic owls

was the first thing you saw

as you walked in the door of our childhood home;

or that my sister and I wore

owl pendants on our lapels

at the funeral.

And now

owls are

everywhere

pillows and wallpaper and tshirts and stickers and notecards and calendars and ornaments and

A Swift Current wherever I go, I see owls

Oh My…Radish Moon creations by Sarah Nicholas Williams

 

And every single time,

I see her–

like a spark,

catching me off guard;

startling–

playful–

elusive.

And it’s not only the owls;

–that would be too easy—

but again and again

just when I least expect it,

–there she is!–

tracing the shadows

just out of reach.

My eyes fall on a solitary figure

a half block away;

her coat–

her gait–

her hair!

I quicken my pace

but just before I call out

she turns her head.

Well, of course-

of course,

I knew that!

(you didn’t really think I’d call out, did you?)

But just for that instant…that flash of an instant…

(thank God I didn’t call out!)

A woman sits next to me in the theater;

she smiles, adjusts her wrap, studies the program

while her perfume takes me to your room

I sit on your bed feel your nervous tension my excitement too as you put on your party dress the babysitter arrives my chicken delight too my face nestled against your cool neck your sparkling earrings my goodnight kiss I promise to be good you look so pretty mama so very pretty please

don’t leave!

I duck into a diner–

a quick bite–

tuna fish salad on wheat toast please and yes, I want the potato chips;

there’s a catch in my throat

but this time I knew you were coming.

I can never order a tuna fish salad sandwich (on wheat toast)

without a catch in my throat

we pile into a booth at DuPars near the Broadway Wilshire or Hody’s at Hollywood & Vine back to school shopping I’m giddy your feet hurt we’re starving! and yes we want the potato chips and maybe even a root beer float…!

And now, mama,

my feet hurt too.

And maybe I understand, if only just a little, what it was like for you.

And how I never told you

all I meant to say.

I stare at the table;

the waitress sets down my plate

you need anything else, hon?

A woman walks down the street;

her perfume

her coat

her hair–

she turns away;

I smile.

Up the block

across the table

in the next seat

an owl peaks out from a tree.

You’ve been gone four years, mama

but you do not fade.

You ease my longing

dampen my sorrow

shelter me.

I still cry, mama

but not as much;

after all

how can I be sad

when you’re

always

just one

step

ahead.

 

A Swift Current  Double Take I see owls everywhere!

Walking Down Lex…Photo by Hallie Swift

 

Opening quote from the song “Things We Said Today” words & music by John Lennon & Paul McCartney Copyright © 1964 Northern Songs All Rights Reserved International Copyright Secured

Halfway Through the Wood photo by Sylvia Ferrell-Jones, copyright Sylvia Ferrell-Jones, all rights reserved. Used by permission. I entitled the photo with a not-so-vague reference to Stephen Sondheim’s No One Is Alone from Into the Woods…the song was the impetus for this essay.

Owl pillows and t-shirts are part of a line of products by illustrator Sarah Nicholas Williams, Radish Moon, all rights reserved. Used by permission. To view the magical Radish Moon creations (drawings and dishes and dolls, oh my!) see http://www.radishmoon.com

And to readers who love the artist Vuillard as much I do, rest assured that I looked…but I don’t think he painted owls, or at least I couldn’t find one!

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…

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