Caregiver’s Nightmare

or Why My Sister Got No Yarn


Photo by Pixabay on


The traffic was backed up on the west side of the Hudson River, a mile or more before the entrance to the Kingston-Rhinecliff bridge. 

“If these cars are all heading to the Sheep and Wool Festival at the fairgrounds, this does not bode well,” I said to my husband, Pat.  He didn’t seem bothered.  Pat has dementia and enjoys car rides even though he rarely remembers where we are going.

The car jam broke up a bit on the other side of the river but slowed to a crawl waiting to turn into the fairground parking. 

Pat was astounded at the number of cars.  It was only about 11:00 a.m. and the rows and rows of vehicles glinted in the autumn sunshine.  I reeled off the states on license plates: Florida, Massachusetts, Connecticut, New Jersey. 

Fortunately, we had our tickets, so we skipped the buyers’ lines and followed the crowd.  For crowded it was.  Our first stop was the llamas and alpacas (and I still don’t know the difference).  We bumped and jostled our way through the goat and sheep barns. 

The one thing I was determined to see was the demonstration of Frisbee-playing dogs.  It wasn’t the sheepherding dog demo that I really wanted to watch, but we made our way slowly to the grassy area marked off by flagged poles where an audience three deep was already gathered. 

The dogs were amazing.  They obviously loved the game, and the trainers/owners loved the dogs. 

By this time, Pat and I were both hungry.  I consulted the map and pointed the way to the food trucks.  It turned out that everyone else at the festival was also hungry.  Each vendor had lines of fifty or more people waiting to order food.  Even the fried pickles truck had a line of obviously desperate people. 

The hordes in the food plaza were worse than Oxford Street in London at Christmas time. 

“I don’t want to wait in these long lines,” I said to Pat.  Ever since Covid, I get anxious in large groups of people. 

And it wasn’t just masses of people waiting to eat.  Every barn and booth was packed.  

The only thing I wanted to do now, having seen the dogs and given up on eating, was to choose some colorful handspun yarn to send to my sister in California.

“Let me get some yarn and then let’s go,” I said.  “We’ll eat somewhere else.”

Pat, agreeable as always, held onto me as I dragged him through the crush.

After consulting the map multiple times, I figured out the way back to Gate 4 and our parking area.  The barns of yarn and wool vendors were still crammed with people, but I pulled Pat into the one near our exit.

Halfway down the swarming aisle, I yanked Pat into a booth.  I began to examine the yarns and the prices.  Sixty dollars for one skein— uh, no.  I turned around and—he was gone.  No Pat.

Pushing my way back into the aisle, I looked around for an Irish cap and gray beard.  There was a cap, but the wrong color and the man was too tall. 

“Oh, no, oh no,” I moaned, elbowing my way to the entrance.  No Pat.  I turned and shoved back the other way.

Already I was imagining finding the festival police, if there was such an entity, and having someone call for Patrick Dillon on the PA system—if they had one.  How in the world would I find him in these mobs of people?  I got out my phone and called his mobile.  It rang and said he was not available.  Did he even hear it? 

My mind played out more scenarios, such as me searching until closing time, when at last people would have gone and he might be easier to spot. 

What would Pat do if he were trying to find me?  Would he use his phone?  Press his emergency medical button?  Ask for help?

Eventually, I suppose, I would have remembered the app that locates him and his phone.  Later,  though, I discovered that he’d unknowingly turned it off in September. 

But then—hallelujah–I spotted him, standing bewildered in front of the next barn over.  What an incredible relief!

“Let’s get out of here!”  I said, grabbing his hand. 

Back in the car, I went over the protocol of what to do if we get separated. 
“Stay in one place,” I directed. But would he remember?

Should I tie us together the next time we’re out in a crowd?—if I ever attempt that again.



Photo by Magda Ehlers on


Before he lost his license,

we traveled.

In Mexico, he braved insane traffic,

maneuvered a Ford Fiesta

through bullying buses.

Before he lost his profession,

he saw clients,

put out brochures

in three counties.

Before he lost his skill,

he could fix anything

with a motor.

Before he lost his agility,

he was a fourth-degree black belt.

Before he lost his past,

he sent out dozens

of holiday cards.

Before he lost his bearings,

he led the way.

Sad Time


Photo by Sachith Hettigodage on


Step outside myself

Watch the morning unfold

Watch him shuffle to the bathroom

Watch me coach him through the shower:


Wash your face with soap

Use the bar of soap under your arms

In your crotch, the butt too

Hold out your hand

Here’s shampoo

That’s my towel and

This is yours

Underwear, incontinent pad

Arms up, deodorant underneath

Now brush your teeth


He is so grateful.

Thank you, dear.

For trimming my toenails

For shaving my beard.

Thank you, dear.


Oh, if only I could say

Thank you, dear God,

For this life of service

Thank you for his gratitude

Thank you for the restrictions

Thank you for the loss

Tell me how to say it.

Teach me how to believe it.

Day Care


Photo by Pixabay on


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.


“Where are we?” he says.

I tell him again.


“I’ll be here when you get home,”

I say.

“You don’t need to call me.

You’re safe.”


I send him out to the van.

Watch him climb in

wipe away familiar tears

like a mother.

Rail Trail I


Photo by Karol Czinege on


Honeysuckle breeze carries

scent of cut grass.

Mower drones

behind shaggy hickories.

He stops to listen.

Maples flutter,

serious oaks think

about making acorns.


Slow walking

One step to his two-step

shuffle-crunch gravel.

On the verges

phlox lilac pink

dandelion fluff

sinister poison ivy,

innocent in shiny green


One chorus of


He’s happy

under the canopy

shade and sun

in his eternal now.



Photo by RODNAE Productions on


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.


The neurologist tossed the two words

into the air, casually,

but I caught them phonetically

in my notebook

and looked them up later.


No cues or modeling or suggestions help.

He can’t change how he moves,

so says

We go for walks, and he shuffles along

behind me.


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.


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.


Photo by Skitterphoto on

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.


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


The fifth Karakesh Chronicle, now available from Handersen Publishing and

Gone, But Still Here: Ambiguous Loss


Photo by Kindel Media on


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.” (

 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.


Available from Handersen Publishing and

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.


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?