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

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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.

The Heart of the Matter

A Swift Current Thankgiving essay and Storycorps The Great Thanksgiving Listen

Vuillard 1895

The things you push away the hardest when you’re young

You end up embracing when you get older…

  I just thought it was too claustrophobic

I had to get away

Now seeing the richness of it, the beauty, the connectedness…

 It moves me to tears…

                                                                                           ~Rosanne Cash

 

…And listen to this, Hallie. The professor said my paper was the best. It was so good–he put a copy in the library– he told the class everyone should read it!

Yes, mama, I know.

You know? How do you know?

You’ve told me that story before.

I have?

Yes, mama, you have…

He said my paper was…

…the best…yes, mama…I know.

We’ve all heard people repeat stories. Sometimes we smile and nod. Other times we change the subject. Often we sigh, stare, and simply

stop listening.

And when a person has dementia, the frequent repetition of unsolicited stories only seems to escalate.

My mother recounted her tales over– and over—and over again. Sometimes she would adopt a theme—the famous term paper but one example—and relive her triumph with every telling.

She could repeat a story for months; each time infusing it with unabashed excitement and exacting detail– as though it had just happened—

as though I had never heard it before.

And then one day, the story would simply disappear. To my great relief, I would never hear it again.

And now

I find myself digging into my memory–

desperate for details.

But I only find vague outlines –general topics, maybe—and the occasional catch-phrase. To my complete surprise, I need to fill in the colors–

what professor–which class—what topic?

But no matter how hard I try,

her stories are lost;

I will never hear them again.

I started writing A Swift Current with the hope that readers would glean insight from our experience. I have tried not to preach nor counsel nor advise. I want you to draw your own conclusions.

But now I am going to break my rule. I offer you one direct suggestion; in fact, it’s a command:

Grab your cell phone–find the “voice memos” app– hit the red button–

record!

And what better time to start than Thanksgiving?

Family stories were the heart of our childhood Thanksgiving dinners. My grandfather sat at one end of our table; my grandmother’s sister at the other. After the last morsel was consumed, my parents would bring out an old dog-eared cardboard box filled with fading family photos. And for the next few hours, we would hear stories of our ancestors– people whose appearance inspired both awe and amusement-what with their serious expressions, funny moustaches and large feathered hats.

…a ship captain on the Great Lakes…

…crossed the plains in a covered wagon…

…elected Sheriff of Tucson…in 1860…

1860?  Somebody write this down!

But we never would. We were lucky if someone scrawled a name on the back of a photo.

But I remember the catch in my grandfather’s voice; the faraway expression in my father’s eyes; the affection in Tia’s husky laugh;

And for a moment, the funny-looking people in the photos would come alive. I learned their names; studied their poses; heard about bravery and sacrifice and determination.

And then I would forget all about them, until the next Thanksgiving.

Every holiday is a double edged sword;

the older I get, the sharper the edge.

Today I cannot think about Thanksgiving without remembering the table of my childhood

and people who are no more;

what I would give to hear their voices again.

This time

I would listen;

this time

I would remember.

And it would not matter one bit that, in her last decade, my mother’s words could be sensible and articulate; fantastical and demented; or confused and redundant–

I would record her voice;

I would capture her stories.

During the last three decades of my mother’s life, she no longer hosted the big holiday dinner. A guest at other tables, she professed to be relieved to no longer bear the responsibility.

But after her death, among her few remaining possessions, I found scrap of paper in her small bureau drawer.

In her handwriting, a shopping list;

from her nursing home bed,

my mother was making plans.

A Swift Current Thanksgiving list found in my mom's last papers

Thanksgiving list-a scrap of paper found among my mom’s last possessions

 

Thanksgiving;

the richness, the beauty,

the connectedness…

There are some things I will never forget.

This is the story of how we begin to remember

 This is the powerful pulsing of love in the vein

After the dream of falling and calling you’re name out

These are the roots of rhythm and the roots of rhythm remain.

                                   ~Paul Simon

 

A Swift Current Thanksgiving essay-and StoryCorps Great Thanksgiving Listen

Pierre Bonnard Grande Salle a Manger Dans Le Jardin 1934-1935

THE GREAT THANKSGIVING LISTEN: As I was writing this post, I discovered that the day after Thanksgiving, November 27, 2015, has been designated the StoryCorps National Day of Listening. Or in their words, “Make history with us: interview an elder for the Great Thanksgiving Listen.” StoryCorps provides a special app; recordings made with the app will be housed in the oral history project of the Library of Congress. The StoryCorps website explains this project in detail, including sample questions. Here is the link: https://storycorps.me/ and https://storycorps.me/about/resources/ I am grateful to my friend Lora, who originally introduced me to StoryCorps a few years ago with the gift of a book called Listening Is An Act of Love.

Family History: I was not surprised to learn that family stories have real value for future generations. Children who know their family’s history, including hardships and failures, are more likely to be able to weather difficult times in their own lives. For more information, see The Stories That Bind Us by Bruce Feller, the New York Times, March 15, 2013 http://nyti.ms/17TFZmv

The opening quotation is from the singer/composer Rosanne Cash, interviewed by NPR’s Steve Inskeep– broadcast on January 13, 2014 with the release of her recording, The River and the Thread . I recommend entire interview: http://www.npr.org/2014/01/13/261398768/rosanne-cashs-mythic-southern-road-trip

The closing lyric is from “Under African Skies” by Paul Simon, copyright 1986 Paul Simon Music all rights reserved.

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

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…