Words

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I come from a mother who talked, advised, and organized,

all from her desk in the bedroom.

Words, words all around.

I come from a father who gave speeches and lectured.

Professorial, he delivered words,

words all around.

Now I come from a talkless home.

My own words land like oil on the man’s ears

and slide away.

His words are mostly forgotten—

the names of things, like gossamer,

tantalizing, just out of reach.

It’s a conversational desert where I am,

a parched land.

The word prints erase as soon as they land on the air.

No memory of what I said or he said.

The only words around me

are those I gather for myself

and hoard as company.

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What were your first language experiences? Drop me a comment.

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The fifth Karakesh Chronicle, now available from Handersen Publishing and Amazon.com

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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Available from Handersen Publishing and Amazon.com

Grail Center Labyrinth–May 15

Word of advice regarding a labyrinth walk:

Do not bring your husband who has vascular dementia.

He cannot remember that this is a sacred activity.

A silent activity.

I send him in ahead of me. 

I wait.  Close eyes.  Find my question.

Slow step.  Heel to toe step.

*

He makes silly Halloween noises when he passes me.

I’m in a bubble, I tell him. Be quiet.

He walks fast.  He sits on a bench. 

He says, People leave stuff here.

Sssh! I hiss.

Slow step. Heel to toe step.

*

Focus, I tell myself, focus on your question.

He repeats, People leave stuff here. 

I give up on the spiritual and focus on the material.

Stones delineate the paths.

The makers have laid down weed deterring cloth

fixed it to the earth with spikes

and metal washers the size of doughnuts.

Then a layer of mulch on the cloth.

Slow step. Heel to toe step.

*

I examine the trinkets visitors have left.

A beaded bracelet and one made of string.

Several cartoon character plastic toys

A dream catcher

A row of scallop shells

A painted red word: peace.

Slow step. Heel to toe step.

*

I am in the center

sacred leftovers jumbled at my feet.

What was my question? 

A laminated photograph of a young man

Latino. 2000-2019

A card about suicide prevention.

Is that my answer?  Gratitude?

*

Get away! Get away! he says, swatting at gnats.

The stone walls stand witness.

Trees breathe green.

Scent of honeysuckle

On a rush of wind

A spatter of rain

Slow step.  Heel to toe step.

*

So many seekers walking

I hold them all within me.

As they hold me

And this bumbling, noisy man as well.

January 6

If the Second Coming was at hand,

would he,

my partner of the muddled brain,

recognize Jesus?

As the chaos spread appalling

across the screen,

he wondered if Raphael Warnock

was the new president,

and why

angry white men

smashed the Capitol’s windows.

When Trump told his supporters

to go home,

he laughed.

Perhaps—

as has been said—

dementia is a new day,

not like the now infamous

January 6.

Police in riot gear,

shifting foot to foot

behind plexiglass shields—

he’ll forget the vision

in a moment.

“Who is the new president?”

he asked six times,

anxious about his visit to the neurologist,

who might test him.

That the leader of the country

is a mad man

only troubles him

for as long as the image

stays on the screen.

What is it like,

inside that mind?

Soft and clean,

like a new pillow?

A fearless place to rest?

Or could it be a dark, roiling ocean

of anxiety and confusion,

a reflection

of the events

on the bigger screen?

California

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The postcard of California

is from his son in L.A.

He reads aloud every word on the map.

“Santa Rosa—I lived there.

Eureka—my family came from Eureka.

Then we moved to San Francisco.

I think I lived in Santa Barbara once.

Have you ever been to California?”

he asks me,

showing that another piece of memory

has broken away,

gone sailing off

into the dark ocean of oblivion.

“I grew up there,” I answer.

“What part?”

He used to know this.

He used to say he was from the north

and I was from L.A.

and we had to get special dispensation

to marry.

He used to—

But now he rereads the postcard.

“Have you ever been to California?”

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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.

Endoscopy

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Tonight I am exhausted from remembering. 

From being the memory.

It started at 5:00 yesterday evening. 

I made us dinner.

He was not to supposed to eat after 6:00 pm,

preparing for today’s endoscopy.

No food after 6,

no liquids after midnight.

I put tape across the refrigerator door.

I wrote NO FOOD on the tape.

I brought him into my sacred space

so I could make sure he didn’t eat.

He sat on the day bed and did crossword puzzles.

I painted with watercolors.

After a while, he got up.

Where are you going? I asked.

Twice.

“To get a snack.”

Again

I explained that food was forbidden.

He was NOT happy.

I wasn’t about to stay awake all night

to keep him from drinking water.

I just hoped it wouldn’t matter.

No breakfast made him grumpy.

More explanations about the endoscopy.

He sat in my workroom

while I wrote a blog post and sewed.

The morning dragged.

Finally we drove to Kingston.

We were early.

They were 45 minutes late.

“We have a line of colonoscopies,” she explained.

I laughed at the image.

He wanted me to come with him—

the man who insists he’s not anxious.

They said no.

Not enough space to maintain social distancing.

I sat in the car.

Waiting.

Listening to an audiobook

because I forgot my handwork and my iPad.

Someone came out to get me.

“He’s sitting up in the chair,” she said.

He was woozy.

“What did they do?”

I explained again.

“What’s this?”

He showed me the green tape on his arm.

This man who is so big in my sight

because he takes up so much

of my thoughts and care and energy—

this man suddenly looked small

and muddled,

dwarfed

by the oversized recliner chair.

    

Dementia: Laugh or Cry?

Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is— laugh.

Yesterday, I was cleaning out files.  The box of paper to be recycled was overflowing.  My husband wandered upstairs to check in. 

“Can I do anything to help you?” he asked, as he often does.  (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)

“Well, yes,” I answered.  “I need a large garbage bag for these papers.”

“Where are the bags?” he asked.  (Are you paying attention?  Most spouses would know where to find the garbage bags.)

I told him, “In the cabinet to the left of the sink.  They’re in a box under the medium sized bags.”  I illustrated the size spreading my arms.  “About this big.”

He turned to go on his errand.  Stopped.  “What am I getting?”

“A large garbage bag.”

“Where are they?”

I told him again. (By this time, I’m already thinking I should go get the bag myself.  But he wants so badly to be helpful.)

He made little grunts as he went downstairs–his arthritic knees complaining.

He was gone a while.  I moved on to thinning out the notes pinned to my bulletin board.

He came back holding—

three packages of snacks!!

Chip Ahoys.  Cheddar rice cakes.  Fig Newtons.

“Is this what you wanted?” he asked.

I looked at the snacks.  I looked at his face.  This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)

What could I do?  I laughed and hugged him hard and long.

Then I took the snacks and went downstairs to get the garbage bag.

Caregiving is challenging. That’s why I value my caregiver group.  We Zoom twice a month.  These are the women who understand.  Who often can offer resources to assist with a problem. 

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Here are two excellent resources for caregivers:

Ulster County Office for the Aging  845-340-3456

1003 Development Court, Kingston, NY 12401

Alzheimer’s Association

800-272-3900

www.alz.org

Where Sorrow Resides

sorrow

Years ago I read that sorrow affects the lungs.  The idea remained buried in a back drawer of my mind.  Recently, though, I’ve had cause to unearth this notion while dealing with a persistent health issue.

In December, while vacationing with my husband in California, I caught a bad cold.  Normally I would rest at home and kick such a virus in a few days.  My illness was exacerbated by an upended routine, long days of travel, and demands to be present for West Coast family gatherings during the holidays.

Three days before our flight back to New York, I realized that it was more than a cold.  My chest felt like it was imploding.  At the local urgent care I was given a “Z-pack” for bronchitis.  Things got a little better until the flight home, when the symptoms got worse. Back I went to another urgent care on a Sunday and was given another antibiotic.

Eight weeks later, I was still wheezing and tired, with stuffed sinuses.  The ENT specialist that I visited said I had a sinus infection and–you guessed it–gave me a third round of antibiotics.

The point of this narrative is this: in Traditional Chinese medicine, lung illnesses are connected with grief.

cycle of creation

ottowaholisticwellness.ca

I’m a grieving spouse, having lost the future I’d imagined with a spouse who is no longer the person I married.  Although I keep active and engaged with caregiving and many activities, I live with an underlying river of sadness, that springs up into my eyes often, sometimes with the slightest surprising provocation.

Grief  must be expressed to let it go.  We can’t measure the severity of loss with instruments, but only by how strongly it is felt. Unexpressed grief harms the lungs.  Coupled with the all the other emotions that caregiving can produce (fear, anger, guilt–see above diagram), caregivers’ health may be threatened.

So how do caregivers cope and keep illness at bay?  Exercise, meditation, support groups, Emotional Freedom Technique (EFT)*, time with friends, religious practice: all of these help me stay healthy.

lungs in chinese medicine

 

The website below was enlightening.

https://www.chinesemedicineliving.com/philosophy/the-emotions/grief-the-lungs/

*more about this in another blog

Monkey Mind, Meditation, and Caregiving

howler monkeys

You’ve heard the expression “monkey mind” when referring to the distracting thoughts that jump like monkeys when one is attempting to be still.  These days, when I sit to meditate, I have an entire troupe of howler monkeys yammering and flinging themselves about in my mind.  I’ve been meditating for a long time, so I know the guidelines: when you notice you’re off the mantra, gently come back to it.

Maybe it was the familiarity of the process, or maybe it was the overflow of emotions, worries, plans, and obligations that have beset me since I’ve become a caregiver.  Whatever the cause, my former simple practice of repeating “Om namah shivaya” (the mantra of Siddha Yoga, translated as “I honor the Light within”) wasn’t working.

A teacher of a class we took introduced me to a different type of meditation/prayer. This method has proved to be helpful for me.  I’m mostly attracted to the feminine aspect of the Great Mystery/Higher Power, so I’ve amended the sentence “Be still and know that I am God” to “Be still and know that I am the Mother and the Light.”  For me, “Mother” encompasses divine love and compassion, while “Light” represents wisdom and clarity.  By offering my mind more to do, I’ve found a way to move those howler monkeys to a distant tree.

Here’s my practice:

I hold my left hand in chin mudra, with thumb and forefinger touching.  The fingers on my right hand track the mantra and prayer by gently pressing my thigh as I silently go through the words, like this:

Inhale: Om namah shivaya

Exhale: Thumb–Be still and know that I am the Mother and the Light.

Inhale: Om namah shivaya

Exhale: Forefinger–Be still and know that I am.

Inhale: Om namah shivaya

Exhale: Middle finger–Be still and know.

Inhale: Om namah shivaya

Exhale: Fourth finger: Be still and feel my presence.

Inhale: Om namah shivaya

Exhale: Pinky–Be grateful.

Note that the mantra can be any word or phrase that has meaning for you and focuses on Spirit. In the midst of full-time caregiving, this process has helped me recapture the deeper calm and solace of meditation.

Do let me know if you try this.  I’m curious to hear if it works for others.

virgen de guadalipe