What It’s Like

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talking to the Mad Hatter

who’s wearing a backward baseball cap

and headphones

peering into the empty, locked car

who says, “Don’t make me a third.”

meaning the guy he sees in the reflection

himself

is…who? Come inside. Please.

“Go away,” he says.

“Leave me alone.”

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being a Dalit

who cleans toilets

with bleach water

several times a day

knowing that put the seat up first

or

stand closer

if understood,

won’t be remembered

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Hand him the tissue

say, wipe your butt

to the blank stare

Your ass! Wipe your ass!

Sometimes he does

sometimes doesn’t

left to me to clean up

two-hundred-pound baby

blank

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if he cannot recall his own past,

relations, stories

if he forgets where he lives,

the year, the president’s name

if all that disappears,

those are his losses

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if I am not remembered as wife,

as friend, as the one who cares

who plans, who cleans

if he can’t recall my name,

my special place beside him,

then I am erased too

Passing Through

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Passing through, passing through

Sometimes happy, sometimes blue

Glad that I ran into you

Tell the people that I’m only passing through.   —Woody Guthrie

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He clasped her left arm

with his right hand

fed her nourishing broth

Greek yogurt, lasagna he made

in her kitchen

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The Opponent drained her appetite

gripped her right arm

with steady strength

and a beady eye

pulled her into

dusty desert dream

on dry scaly feet

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He tightened his fingers

though her arm bruised violet patches

brought her news and music

cucumber and Coke

whatever she fancied

her arm slid away

as if slathered in Vaseline

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The Opponent sneered,

I always win

pointed to the faint line in the dust

she’s almost on my side now

Years pull with me, and weariness,

and sour dependence.

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He tried everything they said

—protein bars, half-pound weights, smoothies–

He couldn’t hold her

not when when she

was letting go

Day Care

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He has his pull-ups on.

I’ve shaved him. (It’s fun.)

He’s got just one hearing aid.

Lost the other one.

He’s had his breakfast,

taken his pills

brushed his teeth.

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“Where are we?” he says.

I tell him again.

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“I’ll be here when you get home,”

I say.

“You don’t need to call me.

You’re safe.”

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I send him out to the van.

Watch him climb in

wipe away familiar tears

like a mother.

Words

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Gait apraxia.

Two new words have sneaked into our house.

Commonly seen in vascular dementia,

gait apraxia

is that shuffling walk

as if feet are stuck to the floor.

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The neurologist tossed the two words

into the air, casually,

but I caught them phonetically

in my notebook

and looked them up later.

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No cues or modeling or suggestions help.

He can’t change how he moves,

so says Sciencedirect.com

We go for walks, and he shuffles along

behind me.

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Before gait apraxia came in the door,

I would say,

“This isn’t exercise!  Walk faster!”

“I can walk you into the ground,”

he’d reply,

lagging further behind.

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Gait apraxia isn’t alone

in taking up residence.

We have anxiety

wringing its hands in the corner.

We have incontinence in paper diapers,

hanging around the bathroom.

But table manners left for the south,

forgetting to close the door.

Weary

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Sometimes

doing the same thing every morning is safe and familiar.

Sometimes

saying the same thing every day is like putting on a lead coat.

Sometimes

returning dirty dishes to be rewashed, I wonder, “Is it worth it?”

Sometimes

 I am mean and impatient and full of guilt.

Sometimes

I see that I live in great comfort.

Sometimes

I think evil thoughts.

Sometimes

his warm hands on my feet are all I have.

Facility

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They say, put him in memory care.

You need to, they say, it’s too hard.

You have no freedom.  We see your misery.

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Someone recommends a place.

Her friend’s sister is a resident there.

I make an appointment for a tour.

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A long driveway, wide trim lawn, a pond.

a ten-gallon fish tank burbles in the lobby.

The walls need paint.

Brown streaks the bathroom door.

A peek into a private room:

all roses and chintz and lace curtains.

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An Asian man sits alone in the dining room,

behind a transparent plastic screen.

His expression is blank, distant.

Two men slump in the TV room.

Two women play Scrabble.

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A walnut-faced Italian woman in a wheelchair,

fingers like roots, complains,

I didn’t have my breakfast!

A bit of egg sticks to her pants.

She says, I wish I were dead.

Where do I go now?

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The walls leak loneliness.

They are all waiting.

Will someone who loves me come?

Does anyone know me now?

Who remembers my story?

Will tomorrow be the same as today?

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Gone, But Still Here: Ambiguous Loss

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Not long ago, I was listening to a podcast when this phrase, ambiguous loss, came up.  I’d heard it before but had forgotten that such a predicament had been identified and given a name.  Now here I am, six years into caring for my husband with vascular dementia, still struggling with the same ambiguity and loss.

For those unfamiliar with the term, “ambiguous loss” first appeared in the work of psychologist Dr. Pauline Boss.  “Ambiguous loss can freeze the grief process.” says Dr. Boss, “People can’t get over it, they can’t move forward, they’re frozen in place.” ( https://www.wellandgood.com/how-to-deal-with-ambiguous-loss/)

 Boss first studied families whose members were pilots missing in action during the 1970s Vietnam War.  Ambiguous grief could occur when a family member was physically absent but psychologically present, in cases of military MIAs, divorce, desertion, or miscarriage.

The same ambiguous loss may occur when the member is physically present, but psychologically absent, as with chronic mental illness, dementia, traumatic brain injury, or addiction.

These days, my husband is unrecognizable as the man I met eighteen years ago.  I try to recall his personality, his presence, and way of being in the world from that time, and I can’t form a clear picture.  He is present in body, slower but still healthy for his seventy-four years.  Except he needs so much guidance, so much supervision, so much of my mental energy.

I have passed through many emotions in six years.  For a long time, I was enraged.  My imagined future, the travels, the freedom of movement, the solitude so necessary for an introvert like myself, evaporated like a puddle after rain.  I grieved for those losses, too, and the companion I no longer had. 

Only recently, I realized that there were some bright sparks in this life his illness has imposed on me.  I can work on my creative projects with little interference.  I’ve established a daily routine that works for me, making only two meals for us each day.  We have our regular activities with friends.  Despite the burdens, these adaptations lighten my load.

Boss recommends ways to cope with ambiguous loss.  I’ve done all of them.

Here they are:

Five tips for coping with ambiguous loss:

  1. Give a name to what you’re experiencing
  2. Find a therapist
  3. Join a support group
  4. Celebrate what remains
  5. Discover new hope for the future

Are you a caregiver?  Have you any additional tips for those of us dealing with ambiguous loss? Send me a comment.

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Hanuman the Monkey God and Caregiving

In the pantheon of Hindu gods, Hanuman is the deity with a monkey body.  He is the devoted servant of Ram (Rama), an incarnation of Vishnu.  Vishnu (if you’re following this) is one of the main deities of Hinduism. As part of the Hindu trinity (Trimurti), Vishnu is the Preserver, Brahma being the Creator, and Shiva, the Destroyer.  Rama, as Ramachandra, is the seventh incarnation of Vishnu, the embodiment of chivalry and virtue.  And Hanuman is Rama’s servant.

Why am I writing about Hanuman?  In the legends that recount Rama’s heroic adventures, Hanuman plays a significant role.  His devotion and service to his lord is unwavering.  In a peculiar way, Hanuman serves as a model for me in my daily struggles to care for one man with dementia, my husband of almost eighteen years.

Perhaps Hanuman’s most famous heroics appear in the Ramayana, an epic tale of good versus evil.  The demon Ravana kidnaps Sita, Rama’s wife.  Hanuman discovers where Ravana has hidden Sita and tells Rama.  In the ensuing battle between Rama and Ravana, Hanuman destroys several demons and then brings Rama’s brother back to life. Hanuman is the ultimate devotee, willing to risk everything to serve Rama.

I am no Hanuman.  Surely the monkey god never gripes about his situation.  We never hear him say, “This is not the life I would have chosen,” or “When do I get some me time?” or “I need a break!” Unlike me, Hanuman never complains. He probably never has a bad day.

He is, however, someone to emulate.

In the morning, while I do yoga, I like to listen to Krishna Das’s album Flow of Grace.  This is a collection of six versions of the Hanuman Chalisa, a devotional chant to Hanuman.  Here’s one to listen to:

https://www.youtube.com/watch?v=IJGV9h2AZ0s

Though I am far from embodying a model caregiver, I look to Hanuman as a reminder that service to others is a virtue.

Once

Once

you put on a jacket when it was cold

you took a shower before you got dressed

you made your own breakfast

you knew which shoes to wear.

Once

you built shelves

you repaired the washing machine

and the lawn mower

you fixed the muffler on my car

with a soup can.

Once

you commuted to your office

to help people

you had things to do.

Once

you were someone

I didn’t have to remember.