Letters to My Mother
Letters to My Mother, Part 1: Why Did You Suffer?
Friday, December 26th, 2025: Letters to My Mother, Stories, Trouble.
You brought so much light, so much joy to our world!
Now that you’re gone, our world is a darker, meaner place
In public, you were sunny, joyful, candid, outspoken
Known and loved for your honesty and directness
Curious to know strangers and learn about your environment
Drawn to outsiders, defender of the helpless
In private, you were thoughtful, critical, empathetic, compassionate
Nature and the arts were your great passions
Yet you suffered terribly at the end
Why?
You changed inside
Became afraid, even terrified
Not of anything in particular
But consumed by fear
At times, and at the end
You became a different person
With a different voice
Agitated, insistent
Shouting, repetitive, mechanical
What was wrong with you?
Science could not describe it
Science had no answers
The most accurate explanation
The most sensible description
Comes from native people
A demon came inside you
Tried to possess you
But why you?
Throughout your long life
You suffered disappointments, loss
Abuse and trauma
Your first marriage ended in divorce
You saw a son gravely injured and disabled
Who became a lifelong responsibility and strain
Later, your closest friend killed herself
You remarried, nursed your husband
Then he turned mean, left you out of his will
You lost your hearing
Lost the freedom to drive
The confidence to walk outside
Grew more and more isolated
You outlived your lifelong best friends
No one left to understand you
Then your demon came
I tried to find help
Your first doctors were arrogant
Their tests and treatments failed
You lost the only home
You’d ever made yourself
I found places to care for you
Where those we paid
Mistreated us both
So again and again
You were moved
Had to adapt to strange places, people
Even moved across the continent
To the mountains of the Southwest
Where you would never see your disabled son again
I tried to help you
Failed in the end
But even as you were losing
You were still giving
And you fought the demon
To the end
Suffered terribly
Why?
I know I should be grateful
For your long life, and what you gave me
I want to celebrate that
But first, I need to understand
This story is just the beginning
Of my struggle to make sense
Next: Your Journey
Letters to My Mother, Part 2: Your Journey
Friday, December 26th, 2025: Letters to My Mother, Stories, Trouble.
Previous: Why Did You Suffer?
Childhood, College, First Marriage, Motherhood
Single Mom, Teaching, Second Marriage
Artist, Gallerist, Traveler, Inspiration
Illness, Hospitals, Depression
Hospice, Nursing Home, Recovery,
New Mexico, Festivals, Rocks, Clouds, Art, Wildfire, Doctors
Your Demon, Sleeping and Starving
Childhood, College, First Marriage, Motherhood
Infinite soul in a tiny package
Raised in a small town your ancestor had founded
Amid the cornfields of southern Indiana
Surrounded by family
Fired by a passion to understand the world around you
The soil, the rocks, the rivers, the moon and clouds
Why is it like that?
What made it that way?
You studied piano
At the best music school in the country
Abandoned your career after a mistake at a competition
Completed a bachelor of arts in English
Became a secretary at a famous brokerage in Chicago
Met my father in the cutting edge culture of the time
The birth of bebop and modern jazz
Married and became my mother
In your husband’s hometown
College town on the Ohio River
You always had a piano
A beautiful Steinway baby grand in our first house
You continued to practice, accompany singers
Taught me some Bach
After eight years of nightly arguments
And a second son, you divorced
Single Mom, Teaching, Second Marriage
You moved us to your hometown
Raised two boys as a single mom
With the nearby help of your mother and father
Obtained your Master’s degree in American Literature
Taught
English to hundreds of teenagers for twenty-five years
Regularly took your sons to the capital
For concerts, dance performances, theater, art shows
By artists from around the world
Your father, healthy and fit
Died one night at home, of a heart attack
Another night, you found your younger son
On a sidewalk, bloody, struggling to get up
After being hit in a freak accident
Involving a sheriff’s deputy
He suffered massive brain damage
The county denied responsibility
Then spread the rumor that your son’s injury was minor
Said we’d defrauded the county out of a fortune
Your talented son ended up with permanent disabilities
Physical, mental, emotional
He could never keep a job, got in trouble repeatedly
Became a constant strain on the entire family
Then your best remaining local girlfriend
Hung herself in her garage
You comforted her family
And years later, you married the widowed husband
A local man you’d known all your life
Who’d inherited a fortune from his grandmother
You retired from teaching
The two of you started traveling
Became fine art photographers
Opened the state’s first photography gallery
In an old industrial building in the capital
Your husband was the businessman
Enjoyed the company of artists
But you’d spent your life
Loving and passionately following the arts
Used your gallery to promote those
Just starting out, or doing experimental work
Your mother had been experiencing blackouts
Checked herself into a nursing home
Finally decided it wasn’t worth it anymore
Refused to eat
Lay in a hospital bed, silently wasting away
For two weeks, as we took turns holding her hand
Your grandfather had only daughters
Left his two highly productive farms to them
To be held in perpetuity
Your mother was the last to die
After her, you were the only survivor
Who wanted to keep the farms
Got in a bitter struggle with your cousin
Who believed sale would bring a fortune
You lost, and in the end
The sale price, split so many ways
Only left a pittance
Priceless land
Thrown away by foolish greed
Artist, Gallerist, Traveler, Inspiration
You and your husband moved away
To the capital’s vibrant downtown arts district
Reopened your gallery there on the Avenue
Only blocks from your new home
The first home you’d ever designed and owned yourself
You turned it into a museum filled wall to wall
Floor to ceiling
With art by you, your family and friends
Your music, your beloved books
Relics of your travels
Respected in the downtown arts community
Beloved in your neighborhood
An inspiration for younger generations
All our ancestors had died of heart disease
And finally you had your heart attack
Stents were placed, you recovered
When your husband’s health began to fail
You nursed him for years
As he grew bitter, wanted to die
Became a mean drunk, cursed you
Finally your disabled son was arrested
In our hometown, on fraudulent charges
After decades of slanderous rumors
Driving the last of our family
Out of the county we founded
Then the last and best of your childhood girlfriends
Died, two thousand miles away
Widowed, Isolated, Declining
Finally your husband died
You were heartbroken
But his daughter had always resented you
Made you leave, took his body away
Shut you out of their plans
After the funeral and burial
We discovered your husband had broken his promise
Failed to provide for you in his will
We had to fight his hostile estate
For a settlement that might give you security
Your heart was doubly broken
Memories of your partner soured
Twenty-five years of joyous memories
Turned bittersweet
I had hip surgery in Seattle
At the age of 89, you flew out to help me recover
Three months later you had a stroke
Standing in the kitchen at night
You wrote “I’m having a stroke” on a notepad
You spent months re-learning to talk
Lost your smile, your ability to play piano
Your fluent speech, your singing voice
But you still had your young girlfriends
Your greatest pleasure
Driving to your favorite restaurants
Meeting them for brunch
Hearing about their lives and ventures
Although by this time
You’d lost most of your hearing
Could seldom understand what they were saying
Your closest cousin died
And with all the girlfriends of your childhood and youth gone
I’m the last, you said
The last of my generation
Then you lost the freedom to drive
Lost the freedom of your city
Another hard blow to your confidence
But you could still walk
With your cane
Over to the Avenue
Meet strangers, visit friends in their shops
Your hearing was so poor
You ordered expensive hearing aids
But they were too complicated
So you ended up never using them
Then the pandemic hit
And you lost the confidence to walk outside
Your world closed in
Between the walls of your memory palace
Even after lockdown ended
Friends stopped visiting
Stopped returning your calls
I don’t need them, you said
I’m content in my solitude
If someone did call, wanting to meet
Now you just said no
Your last surviving pleasure was to read
Frost, Rebecca, Simenon, Tolkien
Life was sleeping late
New York Times for breakfast
Nap in afternoon
Snack, book or movie
Seinfeld or Law and Order
Early to bed
Living in that small, cluttered house
With your injured son
Tempers frayed
The two of you had terrible arguments
He threatened to kill himself
You broke down crying
Called me to mediate
You let some bills go unpaid
I had to start managing your accounts
Tried to talk to you about moving
Into assisted living
You threw a tantrum
Said you would never leave this
The only house that had ever really been yours
But every time you injured yourself
You called 911, ended up in the ER
I arranged a home health aide twice a week
To cook, shop, clean for you
I arranged a nurse to come weekly
To organize and monitor your meds
Illness, Hospitals, Depression
But in July
Your digestive system began to go haywire
I’m so afraid, you cried on the phone
What’s wrong with me?
Finally, at the beginning of September
Miserable with nausea, you called 911
Ended up back in the ER
Where you tested positive for a urinary infection
Doctor Etienne prescribed Keflex
Said you were “safe to go home”
And discharged you
Back home, you called me
Agitated, confused
Didn’t understand how to take the Keflex
Clearly an unsafe discharge
So we called 911 and had you returned
You ended up in the care of a team
Hospitalist, geriatrician, GI specialist
Led by Doctor Botkin
After a week of testing, Botkin said
We can’t find anything wrong
It’s all in your head
There’s nothing we can do
You were hysterical
If you can’t stop this nausea, you cried
Then put me out of my misery!
I flew in from New Mexico
We need a second opinion, I told Botkin
There are no second opinions, Botkin replied
I’m the authority here
You couldn’t believe
This place you’d trusted for decades
Could no longer help you
So I asked Botkin to explain
And the man of science told you
You’re in God’s hands now
I will pray for you
Despite claiming it was all in your head
Botkin gave you no referral to a psychiatrist
Since the hospital – the biggest in the metro area
Had none on staff
At home
You sat on the sofa
Hunched over, head in hands
I had a terrible nightmare
I can’t eat
I can’t do anything
I discovered another hospital
Far to the north
Had a geriatric psychiatric unit
The only one in the area, maybe the state
When we arrived in their ER
You were so depressed
You couldn’t talk
You couldn’t drink or eat
You could barely open your eyes
They put you in the care of another team
Hospitalist, geriatrician, psychiatrist
I told them about the GI tests and scans
Performed already, ruling out a GI condition
But of course they couldn’t trust me
Had to repeat everything
They sent in Doctor McNulty
A geriatrician
I told him I was your son
With powers of attorney
I could speak for you
I’ll be the judge of that, he said
My mother is severely depressed, I continued
Nothing you’ve described to me implies depression, he said
Now if you don’t mind
I’d like to examine my patient
McNulty decided your problem was upper GI
Tried carafate, ordered an upper endoscopy
The drug failed, the test negative
Nothing we can do, he echoed Botkin
She belongs in hospice
Meanwhile your nose was bleeding uncontrollably
You lay in feces while I ran around calling for help
Finally the hospitalist gave you IV antibiotics for another UTI
I tracked down the psychiatrist
He agreed to transfer you upstairs
To the geriatric psychiatric unit
In the meantime
He prescribed Ritalin
Hoping it would relieve your depression
Increase your appetite
So you were moved
Into another lockdown unit
Like a prison
At the dark end of a long corridor
Last painted decades ago
Where I could not call in
And could only visit between 12 and 1
By announcing myself at the intercom
Outside the security door
The Ritalin destroyed your ability to pay attention
Made you nervous, jumpy, agitated
Twitching, eyes darting around
I waited over the weekend
To see the director, Doctor Class
Who’d received his medical training
At the esteemed Oral Roberts University!
Doctor Class had a wonderful bedside manner
He changed your meds
Put you on something new for anxiety
I had to fly back to New Mexico
To refill my pain meds
While I was gone
Doctor Class pronounced you treated
Said you were ready for rehab
To prepare you to return home
Hospice, Nursing Home, Recovery
I’d studied facilities all over the area
Dozens, maybe over a hundred
Found the ratings all disagreed
Asked around, got a personal recommendation
To a “continuing care” home
In a wealthy suburb north of the city
Part of a corporate chain
Isolated in a corporate park
Up to a two-hour drive in rush hour
From your home downtown
Where I was staying
When I flew back a week later
At the beginning of October
I found you terminally depressed
You’d refused therapy
You could not stand
You could not walk
You could not eat
You could not drink
You could not even talk
I sat there beside your bed
You stared at me, yearning
I asked if you wanted to die
You nodded yes
I asked if you wanted to go home
You shook your head no
You’d always wanted to die at home
And that’s what I wanted for you
But your small, cluttered home, with its steep stairs
Was no longer safe for you
And now, you would never see your home again
You were admitted to hospice at the facility
Moved to a room at the very end
Of the long-term care unit
Where out your window
We could watch the staff carrying garbage to the dumpster
I told them to take you off all the anxiety drugs
You continued to suffer from nausea
Numbness of your mouth and throat
But gradually, you recovered
No longer wanted to die
And thus began the cycle
The joy, the relief of recovery
The return of your anxiety
The nightmare of your suffering
Your room was tiny
But I took photos of your art at home
And you picked the pieces
And where they would go
In these care facilities
They woke you early
To give you meds
Shocking your system
Confusing you
Offered strange food you couldn’t eat
At times when you weren’t hungry
And when you were hungry
The kitchen was closed
You needed an aide’s help to go to the toilet
Your bed and bath had a call button
But it took them up to 45 minutes to respond
So you screamed for help
They called you a fall risk
And wouldn’t let you walk on your own
During the day, they confined you in a wheelchair
The armrests were too high
So you couldn’t move by yourself
Had to be pushed around
They kept you at the nurse’s station all day
Surrounded by patients who couldn’t talk
Where you slept sitting up
Waiting to be pushed somewhere else
Their programmed activities, like wheelchair yoga
Made you dizzy because you couldn’t hear
What they called entertainment was only tired cliches
Celebrities, Little House on the Prairie, juvenile cartoons
Drugs and confinement had weakened you
Shortened your attention span
You could no longer read
No longer operate your phone, iPod, computer, remotes
I got you a notebook
You kept a journal
In the flowing cursive you learned
During the Great Depression
Days and times
What you ate
Medicines they gave you
Where they took you
Who you talked to
What was said
Grateful when you weren’t afraid
When I visited, you made me read it
COOL IT, JOAN! you wrote
At first you loved your caregivers
Some loved you back
Others were just collecting a paycheck
One kept hurting your crippled shoulder
Jerking your top off every morning
Kylie, the executive director of the nursing home
Had a wonderful bedside manner
In late October, I told her an aide was hurting you
Kylie demanded the name of the aide
But I had no way of getting it
Then I can’t help you, she said
I had to return out West
But in our talks, you said
That woman keeps hurting me
Every morning
So after a month of this
I told Kylie I would have to report it to the state
She finally investigated
Found a systemic problem, suspended an aide
Too late for us
I was the only one you could trust
Memory Care, UTI, Recovery
At the end of November
Again, I found myself looking for a home for you
All the best places had waiting lists
But a room was available at the newest location
Of a small, exclusive, locally-owned
Highly-regarded chain of memory care facilities
I told them you were not suffering from dementia
Only from anxiety
No problem, said Diane, the director
She sounds perfect
Because we had an unusually close relationship
And because of our history with unreliable caregivers
We needed to be together as much as possible
Nearing the end of your life
But Diane said
We advise families not to visit
For at least the first ten days
Gives new residents a chance to settle in
Learn to trust their staff
Adapt to their new home
In mid-December, within days after you moved in
You were yelling, your face tense
What’s going on?
What am I doing? over and over, like a machine
Sounds like a UTI, said Lindsey, your nurse
She put you on a strong antibiotic
And within days, your agitation stopped
Your anxiety was gone
For the first time since June
I studied the daily journal I’d kept since September
Concluded your problem all along
Had been chronic, untreated urinary infections
We put you on a daily, low-level antibiotic
To prevent future outbreaks
The other residents
Your neighbors
Were all advanced with dementia
Crying all the time
Acting out
Pacing back and forth like zombies
None of them could talk to you
Your heart reached out to them
You held their hands, tried to comfort them
During the following weeks
You suddenly discovered how to “walk” your wheelchair
Using your toes
You were so excited!
Regaining some freedom
After months of helpless confinement
A week later you suddenly stood up, unassisted
And began using a walker
All over the house by yourself
You recovered the ability to toilet independently
Read, check your email
You still had help changing and bathing
But for months, you’d complained
Of blurred vision in your right eye
I had you taken to an ophthalmologist
Who diagnosed glaucoma
The home advertises healthy chef-cooked meals
But we soon discovered the chef buys prepared foods in bulk
Often frozen, which the aides warm up onsite
Frozen tater tots being the most common menu item
Confined in that house
With those mute women
In the middle of Midwestern winter
You were bored, stir crazy
The rooms didn’t have call buttons
When you could get someone to help call me, you said
They don’t come when I call for help
And when I yell for help, it makes them angry
I’m miserable here, take me away!
The families of other residents visited often
Staff spoke with reverence of a doctor
Whose wife, suffering from dementia
Had been a nurse
Doctor Klein gave us that piano, they said
The wife often acted out, attacking staff
Attacking me, needed to be restrained
But Doctor Klein, who lives in the former governor’s mansion
Visited daily and was always welcomed
In January, I emailed Diane, the director
With some suggestions for helping you
She loves it here, Diane said
She’s only miserable when you arrive
Must be the mother-son dynamic
And as I prepared to cross the continent
Back to my home
I was in your tiny room hanging a picture
When two residents with dementia ran in
One threw herself on your bed
The other backed you into the corner
Yelling and shaking her fists
I called for the aides
One came in, gently tried to encourage
The invaders to leave
You were crying, the aide ignored you
After they all left, I went to find the aides
Told them you were traumatized
Asked them to comfort you
Why should we? Sarah responded
It’s all your fault
Must be the mother-son dynamic
I turned to Ashley, that I had befriended for months
She’s always fine until you arrive, Ashley said
We’re all glad you’re leaving
Sarah nodded, and smirked
When she saw how shocked and hurt I was
New Mexico, Festivals, Rocks, Clouds, Art, Wildfire, Doctors
Travel was killing me
In February, we talked it over as a family
You agreed to move to my hometown in New Mexico
Your disabled son also wanted to move
Looked forward to getting out of the big city
Again, I wanted to care for you at home
But my home was not accessible
And it was too small even for my needs
We have two “assisted living” homes here
I picked the least depressing
Figuring I could make up
By spending more time with you
Entertain you at my house
Introduce you to my neighbors
Take you to restaurants, galleries, museums
On road trips into our mountains
Maybe even open a gallery together
Preparing for the move
You practiced walking with your cane
Which no one had let you use
Since last summer
The trip out, in mid-March
Was traumatic for both of us
Flying with a nurse
Overnight in Phoenix, the nurse
Put your suitcase next to the bed
So that getting up to pee
You fell over it, gashing your leg
I was up all night taking care of you
While the nurse slept
Your new home had a shabby facade
And a rustic, mazelike interior
Built in the Seventies
Rooms like a motel
Yours the smallest
All the way in the back
But it was clean and odor-free
With vintage, feminine decorations you loved
Plants everywhere
Flowers in a central patio
Caregivers simple country girls
Some friendly, some indifferent, some hostile
There was more wall space here
I filled with your pictures
Bookcase full of your books and movies
But you could no longer work the player
Desk for your computer
But you could no longer use it
At least you could still read
And across from your bed
The wee ceramic house from your Christmas village
Windows glowing safe at night
Again
Elizabeth, the onsite owner, told me to stay away
For at least ten days
Give you a chance to settle in
Learn to trust them
Adapt to your new home
But of course, I couldn’t stay away
You were my mother
I was your son
These times together were precious to us
They only allowed visitors
Daily from 10 to 12 and 2 to 4
Whereas in Indiana
Family were always welcome at mealtime
Here, family were not allowed
To visit during meals
Ernestine, the manager
Resented me from the beginning
Scowled whenever she saw me
Because I remained in charge of your healthcare, normally her job
And because I was the only person you trusted
The second day after you arrived
Before I visited you
I met with Elizabeth and Ernestine to discuss your anxiety
She’s fine, said Elizabeth
You just need to stay away, said Ernestine
She gets agitated when she sees you
Suddenly I could hear you screaming
Somewhere in the back, out of sight
WHAT’S WRONG WITH ME? you cried
HOW DO I GET HELP?
Over and over, like a machine
I took you to the ER
To get antibiotics for a UTI
It worked, again, at first
It was April, our dry season
When I visited, you almost always wanted to be taken out
You used the walker inside
But I got a transport wheelchair to take you out
And the first thing you wanted to see was rocks
You’d become obsessed
With pictures of rock formations in my Dispatches
OH! OH! you cried
Look! Look at them!
You know the first thing I’m going to ask you
You continued
What made them that way?
What are they made of?
Do rocks have roots?
Do they talk to each other?
Wiser than most geology students
I took you for an ear cleaning
You started wearing your hearing aids
At last, you could hear, carry on conversations
You’d graduated from hospice after six months
I got you a doctor, your first PCP
Since your old one quit last June
Had your first checkup in over a year
I invited Ernestine
And when I mentioned your anxiety, your outbreaks
Ernestine interrupted
There’s nothing wrong with her, she said
You’re the one that needs help
You’re the one that’s causing her problems
I told her to shut up, she never forgave me
In May, you needed a haircut
And once there, you asked for a dye job
First in your life
To assert your independence
Everyone loved it, I was so proud
Why did you choose this town? you asked
So many reasons, but elder care not one of them
I took you to a psychiatric nurse
Since doctors were so few here, and hard to see
I kept asking providers if you could get a brain scan
And a comprehensive neurological exam
But that would require hours of travel to a big city
And they all said it wasn’t needed
The psych nurse put you back on the drug
That had controlled your anxiety at home, for years
I took you to the best of our local art galleries
This is very sophisticated, you said
It could be New York
The small-town attendant had no idea
What you were talking about
Took you to our biggest festival of the year
You loved people-watching
Bought a quilt
In June, I took you to a Latin festival
Saw one of the two best musical acts
I’ve seen since I moved here
But you were restless, became agitated
Back at the home
Again, you couldn’t adapt to the schedule
Didn’t recognize most of their food
And they wouldn’t feed you when you were hungry
You were rapidly losing weight
I bought a mini-fridge for your room
Filled it with your favorite snacks
Yogurt, Boost, Sprite, ginger ale
Most of the staff at our medical practice
Resigned, accusing the director of sexual harassment
So I had to move our care to a new place
And a wildfire started
In the mountains north of town
Spread east, then back west
Toward town
I took you out to watch the smoke column
A display of nature’s power
You might never see again
The fire came over the ridge above town
Evacuation zone only two miles from you
I called Elizabeth
What’s your plan for evacuating residents, I asked
We don’t have one, she replied
It’s up to families to save their loved ones
Cumulus clouds were forming
Ahead of the monsoon
OH! OH! you cried
Look at them!
Told me how as a girl
You found faces in them
People, dogs, horses
Shapes others couldn’t see
Why are they like that?
Where do they come from?
I took you on a longer road trip
To see rock formations in a canyon
In our high mountains, where I often hike
Discovered you became agitated on road trips
I was wearing a knee brace
Had to push your wheelchair up and downhill
Attend to your endless needs
Still, you talked about it for days afterwards
Our monsoon started the first of July
Our most important season
Every time I visited, you wanted to go see the clouds
I found places where we could pull off the road
And watch from the car
You always demanded a hot fudge sundae
At Dairy Queen
Where I hated to wait in line at the drive-up
Beside the filthy dumpster in back
I was writing new songs
I brought my guitar to play them for you
As always, even at the age of 98
You gave me insights
They’re all defined by rhythms, you said
Rhythms for dancing!
Other residents joined us
Ernestine overheard, said she loved my music
The first time she’d been friendly
Two-faced, you said
Kind to you one time, mean to you the next
You had another episode of hysterical agitation
I took you to the ER for antibiotics to treat the UTI
Your culture tested negative
But the episode faded
You seemed really weak and sluggish one day
Slurring your speech
I took you to Isaac, he ordered a brain scan
It showed nothing abnormal and you recovered
I finally took you to our university museum
Featuring the pottery of the ancient ones
Who farmed the river valleys east and west of town
Unique in the world
You were surprised, delighted, intrigued
Kept wanting to come back
Back at the home
They never saw you having fun
They only heard you crying my name
And hated it
Angry that you couldn’t adapt
Never felt at home
Never came to trust them
Last fall, hospice had ordered lorazepam oral concentrate
Administered with a dropper on your tongue
It was the “silver bullet” for anxiety attacks
Taking effect in about 20 minutes
We called it your “drops”
You asked for it two or three times a week
I couldn’t find an apartment for your disabled son
Started looking at houses for him
For both of you, maybe even for all of us
Spent days driving and touring with my realtor
Took you to my long-time PCP
We started a comprehensive review of your meds
Asked Ernestine to help
I’ll never cooperate with you, she said
You made it clear you don’t want my help
By August, it was clear the monsoon would be poor
Our drought would continue
But the clouds continued
Your delight unabated
I finally found an apartment for my brother
Management began renovating it
You had good days and bad days
Calm days and frightened days
Sometimes changing moment to moment
Your “drops” couldn’t always keep up with it
STOP IT! you wrote in your journal
It’s hard – too hard – can I continue this?
Calm down!
And when I took you out, you said
All the things you like about this town, I like, too!
This town has everything we need!
Well, almost
At the beginning of September, the apartment was ready
I arranged to sign the lease
But your disabled son changed his mind
Your heart was broken
You’d never see him again
Your fear was now almost daily
I’m so afraid, you said when I visited
I’m going to die!
And between my visits, you yelled
TIM! TIM! TIM! over and over, like a machine
Your Demon, Sleeping and Starving
I finally realized I’d come to the wrong conclusion last winter
You hadn’t been suffering from chronic UTIs
Your problem had been mental all along
Beginning last summer, with your nausea, upset stomach
Intestinal distress, negative hospital tests
Failed psychiatric treatment
I know you don’t want to hear it, Ernestine told me
But before you became involved, she was happy and calm
Now she’s miserable all the time
Stephanie was the only aide you loved, and loved you back
The one who always went the extra mile for you
Elizabeth tried to trick me into accusing her
Of insubordination
Stephanie knew her value, and left
Our PCP referred you to our leading psychiatrist
I told her I’d never heard of anyone
Suffering and declining at the end of their life
From anxiety and agitation
She said it happens sometimes
We don’t know why
She started you on an anti-psychotic, quetiapine
Back at the home, with Stephanie gone
The remaining aides let your care lapse
Your hair and teeth unbrushed
Skin rough and dry
Facial hair and nails grew long
Hearing aids uncharged, inadequately inserted
I made a list, scheduled a meeting
You and your mother are never satisfied with what we do, Elizabeth said
We don’t need your list
Our staff tell us everything we need
Your mother refuses our care
, Elizabeth said
Yelling and screaming at our staff
She’s the worst we’ve ever had
In 40 years
Ernestine nodded her agreement
And Elizabeth ran out of the office
She’s really angry, said Ernestine
We’ve only had to give 30 days notice twice before
And we’re close to doing it now, with your mother
You should stop visiting so often, said Ernestine
That would make it easier on us
I agreed to cut back to twice a week
And began taking a second, deeper look
At the other options
The nursing home next door had fluorescent lighting
Stained walls, peeling paint, hospital beds
No space for your pictures
The other assisted living place, downtown
Was understaffed, twice I gave up and left
When no one came to let me in
Pipes running along the walls inside
Tiny, dark rooms that hadn’t been painted in decades
The veteran’s hospital, ten miles east
Had huge, spacious long-term care units
Newly built, with friendly staff
But with hospital beds in shared rooms
And no space for your pictures or anything personal
Your illness advanced
Took away your ability to read
Your ability to make calls
Watch TV
TIM! TIM! TIM! you cried
Over and over, like a machine
When you needed something
And I wasn’t there
I’m afraid, you told me
I’m so scared!
They’re mean to me here!
They’re making fun of me!
Take me away!
Science had no explanation for your illness
Terminal anxiety was not an authorized diagnosis
Your chart had shown “vascular dementia” for years
But that just meant you had some short-term memory loss
Your mind remained sharp to the end
You remembered important things
Native people would say
You were possessed by an inner demon
That’s the only explanation that makes sense to me
The antipsychotic, quetiapine
Mostly kept you calm
By making you sleep
Almost all the time
Weaker, you needed more help
But the aides were overwhelmed helping others
Quetiapine robbed you of speech
And the ability to write
The last entry in your journal
October 13, 2025
I could only understand you
After you’d struggled to talk for a half hour or so
Still there were many words
You just could not find
You were hungry whenever you woke up
But that was never at mealtimes
And since they wouldn’t feed you when you were hungry
You continued to lose weight
And with weight, strength
Visibly skin and bones
The medicine was killing you
But taking you off
Would release your demon
Weak and dizzy, you fell
Bruised your head
Tore the skin of your arm
I called Ernestine to your room
Told her about your fall
She said it was not on your record
So it couldn’t have happened
She has a mental illness, Ernestine said
You can’t trust anything she says
Barely conscious, you turned 99
As far as I can tell
None of our ancestors ever lived that long
Your doctor wanted to put you in another
Hospital psychiatric unit
The nearest were either a 3-hour or 5-hour drive
But we’d been there, done that
A few days’ “treatment” in prison-like conditions
Is no solution for anyone
What you needed was love, not more drugs
So I spent a week studying and interviewing
Residential behavioral health treatment centers
In cities 3 to 5 hours away
None of them would accept you
Because of the level of care you needed
Meanwhile, you were dying in the “care” of Elizabeth and Ernestine
So I drove to the nearest city
Where based on an hour-long intake interview
A friendly agent gave me a tour of potential homes
But all had problems
Claustrophobic facilities with caring people
Or luxurious facilities with inadequate care
And I knew the drive would wear me down
Desperate, with sole responsibility for you
Needing someone else besides Ernestine
I got you admitted to hospice for a second time
Severe protein-calorie malnutrition
Was your official diagnosis
Starving to death
I wanted to bring you home
To my house
A local agency offered to provide home help
We had calls and meetings
Planning and scheduling
I called a contractor to make my home accessible
But at the last minute, the home help agency cancelled
Neither they nor any other agency here could provide caregivers
Overnight and on weekends
When we needed them the most
And when you woke up
I hate sleeping all the time! you struggled to tell me
I want to walk!
I want to go out and walk!
But I don’t want to get up
And I hate that!
They finally lost one of your $6,000 hearing aids
And now, half your hearing was gone
Your glaucoma had advanced
You said you could no longer see out of your right eye
The medicine that controlled the worst of your fear
The medicine that made you sleep and miss meals
The refusal of the home to give you the food you liked
The refusal of the home to feed you when you were hungry
The weight you’d lost as a result
It all told your body to start shutting down
And finally, you began to leave this world
Next: Losing Your Struggle
Letters to My Mother, Part 3: Losing Your Struggle
Friday, December 26th, 2025: Letters to My Mother, Stories, Trouble.
Previous: Your Journey
I’m in another world, you told me
I was dreaming
I was in my dream world
I was trying to think things out
You weren’t here
I’m just trying to get things straightened out
I’m not here (you tapped the quilt)
I’m here (you tapped your chest)
I wish I could replicate it for you
And another time:
How did you get here?
What took you so long?
I’m so scared!
They’re mean to me here!
Take me away!
I want to go home!
To my home? I asked
Yes!
So I cleared a room in my house
Hospice delivered a bed, commode, supplies
I set up a bedroom for you
With easy chair, lamp, TV, pictures
Modified my bathroom
Added thresholds for your walker in doorways
And night lights between rooms
Built a wheelchair ramp for my front entry
Shopped and filled cupboard and fridge
With your favorite foods
You couldn’t get at assisted living
Moved you the day before Thanksgiving
You were so weak
For the first time
I had to lift your entire body weight into my car
At home I cooked for you
You were hungry but couldn’t feed yourself
I had to feed you, clean up the food you spilled
And after, for the first time
You could no longer stand or walk
I had to lift your entire body weight out of bed
On and off the commode
As there was less and less of your body
I became more and more familiar with it
Body that had formed me
Body I came out of
You fell asleep in bed in mid-afternoon
Slept through till next morning
Thanksgiving Day
MOTHER! MOTHER! MOTHER! you cried
Over and over like a machine
Eyes staring up
Searching eternity
Sleeping, waking
MOTHER! MOTHER! MOTHER!
Chest heaving in your endless cry
I gave you the anxiety drops
Waited twenty minutes
A fool, I tried to explain
Your mother died long ago
You turned to stare at me
Mother was here!
Earlier!
Is Mother gone?
Is Mother dead?
We never really die, I said
We always live in the hearts of those we love
Now I was crying
Do you suppose we’ll learn to swim? you said
Where did you learn to swim?
And at sundown
DADDY! DADDY! DADDY! you cried
Desperately, like a machine
Eyes wide
Searching eternity
From then on
Every fifteen minutes or so
You cried for Daddy endlessly
Until you ran out of breath
I didn’t know what to do
In 73 years of life
Nothing had prepared me for this
By mid-evening
Your face white as a ghost
Your lips raw red from shouting
I gave you another dose
But you wouldn’t let up
Crying for Daddy
With all your heart
The medicine wasn’t helping
I called hospice
Give her the morphine, they said
I gave you the morphine
Waited an hour
DADDY! DADDY! DADDY!
I went to your side, stroked your hot brow
Tried words of comfort
You looked at me one last time
Get in bed with me! you pleaded
So I rolled the bed out from the wall
And laid down beside you
And you relaxed at last
You fell asleep
I was weak
I couldn’t take this anymore
I called Ernestine
Now you know what we’ve been putting up with for months, she said
And in the morning, she took you away
When I arrived at the home a few hours later
You were still yelling, in your room
GRANDFATHER! GRANDFATHER! GRANDFATHER!
Grandfather’s farm
That’s where you wanted your ashes spread
And now, you’re on your way
In the midst of your cries
Aides tried to swab your mouth
Apply balm to your lips
If they tried to give you water
You clamped your mouth shut
GRANDFATHER! GRANDFATHER! GRANDFATHER!
Hoping to ease your suffering
I asked Ernestine to start you on the morphine
She’ll never wake up again! she warned me
I nodded yes
Hospice said you had three days at most
But I wasn’t sure when that started
You’d had a bit to eat and drink yesterday morning
Nothing since then
At home I prepared
To return and keep a vigil by your side
Came back the next day
You were drowning
Gasping
Neck arching
Shoulders wrenching
Fighting a flood rising inside you
Fluid filling your chest and throat
They said you were sedated – another lie
You would not give up
Their comfort an empty promise
It just got worse and worse
Sunday I came prepared to spend the night
Sat and watched you drowning and fighting
Held your hand
Stroked your forehead
Called you Sweet Mother
Called you my love
Aides came two at a time to swab and turn you
Check and attend to sores
I stepped back to watch
These were the aides who cared
But the shift changed
A departing aide gave me a long hug
The hostile and indifferent aides arrived
I stayed out of their way
But they didn’t check you for sores
Treated you like an object
And when they turned you
They hurt your shoulder
You moaned
I mentioned your crippled shoulder
Asked them to be careful
Thanked them as they left
Shortly Ernestine called
Told me I would have to leave
My presence was making her staff uncomfortable
She said,
If you wanted to be with her when she died
You should’ve kept her at home
And back at home
Less than an hour later
I got the call
You had lost your struggle
Without my hand
Without my voice
Alone at the end
I returned
Past the hostile aide at the door
Past Ernestine in the dining room
I sat with you, held your still-warm shoulder
They’d dressed you in someone else’s clothes
But you were more beautiful than ever
Your long-clenched skin finally relaxed
Smooth and youthful
The lines of your bones strong and straight
Eyelids lowered over the bottomless dark
Of eyes I would never see again
A face I can never forget
That kills me to recall
I laid myself down over you
Cheek to cheek
Hugged your shoulders
Kissed your cooling flesh
I spoke to you softly
My voice hoarse from crying
Sweet mother!
Beautiful mother!
You’re with me always
Where will I go to escape?
Is that what I want?
I don’t want to live
I would’ve stayed there forever
Kept you warm as you grew cold
And as you left me
You led me into your sacred space
A space that only happens
Once in a lifetime
To show me
The Greatest Mystery
Light and darkness
Flesh and bone
Warmth and chill
The pain was gone
And all that was left
Your stunning beauty
Everlasting, in my hands
In my eyes
In my mind
Beyond life
Beyond death
Next: I Tried to Help
Letters to My Mother, Part 4: I Tried to Help
Saturday, December 27th, 2025: Letters to My Mother, Stories, Trouble.
Previous: Losing Your Struggle
More Than a Loss
When a loved one dies
Slowly, in front of us
It’s not a loss
Like losing our keys or wallet
It’s our flesh and blood
Dying in front of our eyes!
It’s a trauma we suffer through
Over a period of time
A weight that adds to our load
Works on us over time
I haven’t lost you
You’re always with me
In my heart
I’m not looking to find you
Like I would a lost wallet
Or a set of keys
So I don’t want to hear
I’m sorry for your loss
People used to say
At least now she’s at peace
But you never found peace
And now you’re dead
More Than a Parent
All of my artist friends had conflicted relationships with their parents
Resented, even hated one or both of them
Like me
All of them ended up living far away from their families
But unlike me
Few of them participated in their parents’ end of life care
Few of them were present during the death of either parent
You and I frustrated and angered each other at times
But we were more like siblings, even twins
Than mother and son
Raising me, you gave me many of my lifelong passions
Much of what makes me who I am
The joy of music, the arts, literature
The curiosity, wonder and delight in nature
From the beginning, you set an example
Of how to live
Eating healthy, staying fit
And after I moved away
And we pursed our separate lives
We wrote, called, visited often
Shared almost everything
The loves, the suffering
Triumphs, catastrophes
Knew each other’s friends, lovers
You followed my work
Remained a tough critic
Kept me honest
So it was easier, in the end
For me to see you as a person
Not just a parent
For years, I’d been living mainly for you
Choosing my hikes for you, taking pictures for you
Writing Dispatches for you
Now, I didn’t want to keep living
But others kept demanding work from me
Information, paperwork, signatures
I wondered, when the work is done
Who will I live for?
I’d had to give up all the routines that kept me healthy and fit
No longer knew who I was doing them for
I supposed at some point I would start doing creative work again
But couldn’t imagine starting
I’d always felt at home
In the vast, unpopulated desert basins of the Southwest
But now that I had no one to come back and share my journeys with
They just made me feel alone
The size of this world overwhelmed me
And in it there was no one who cared if I lived, died
Or disappeared forever
It was a ruthless world
No place for a man alone
Old and Unprepared
You wouldn’t talk about dying
Never made plans for your care
And when you needed it
I was old, declining myself
Before our ancestors left the farm
Before careers and cities
Where caring became a commodity
To buy and sell
Our elders aged at home with family
But we had long given up tradition
In favor of bureaucracy and the consumer markets
And when I needed to become a caregiver
Alone, with no partner, no sibling
No child to share the load
I had none of the skills
But one thing we’d never given up
Was the obligation, the duty to family
So it wasn’t just my love, our special relationship
That drove me to help
Because I also helped my brother, your injured younger son
Who had never been close
In fact, I’d always dreaded the day
Thought, I can’t do that, I’ll never do that
But when it came
I just dropped everything
And started helping
I’ve always been a seeker
Looking for experience, knowledge, and wisdom
In dark and dangerous places
And lo and behold, nearing the end of my own life
I discovered that helping others
Feeding them, changing their diapers, cleaning up accidents
Is essential to being human
If only I’d learned that
Before I became too old and feeble
To do it well!
My Trials
Forced to Leave My Dying Mother’s Side
As you were dying
In that home where we had been made to feel unwelcome
There was a shift change
The hostile and indifferent aides arrived
I stayed out of their way
But they didn’t check you for sores
Treated you like an object
And when they turned you
They hurt your shoulder
You moaned
I mentioned your crippled shoulder
Asked them to be careful
Thanked them as they left
Shortly Ernestine, the manager who had blamed me for your illness
Tried for months to separate us
Called and told me I would have to leave
My presence was making her staff uncomfortable
She said,
If you wanted to be with her when she died
You should’ve kept her at home
And back at home
Less than an hour later
I got the call
You had lost your struggle
Without my hand
Without my voice
Alone at the end
I lost the only chance I would ever have
Your Suffering, My Helplessness & Guilt
I’m good at many things
Used to being able to solve problems
Your suffering broke my heart
So tiny, so afraid, so helpless
Desperate to help you, I could not
I hounded aides, nurses, doctors
In rare moments when I could reflect on your life
I felt I was punishing you
Torturing you instead of caring for you
By leaving you in their hands
To fall alone, injure yourself, cry for help
It will haunt me forever
That I couldn’t stay and care for you
But worse than any of this
Was watching you, hearing you, feeling you die
Unlike anyone I’d ever heard of
Crying for your parents, your grandfather
Drowning, struggling to the end
Your Neediness, Demands, Manipulation
Long-term, this was the hardest on me
More and more helpless, surrounded by strangers
Trusting only me, who could only make short visits
When I arrived, you overwhelmed me with demands
And when I needed to leave
You tried different ways to make me stay, and got better at it
I always ended up late, out of time
Unable to do things I needed to keep myself healthy and fit
I got angry, I scolded you and left abruptly
Left you with strangers you didn’t trust
Hating myself
Mistreatment by Paid Caregivers
At the homes I found for you
Management lied to us
Tried to manipulate us
Abused us verbally
Blamed me for causing your illness
I learned the names of the staff
Always arrived with a smile
Thanked them for their help
Asked about their health, their families
They kept trying to separate us
Prevent me from visiting you
Despite welcoming the families of others
You said, No one else can do things as well as you
That’s why they’re angry at you
How I Coped
Time Balance
During the past fifteen months
I went from spending up to ten hours every day
With you in hospitals
To visiting for only two hours, twice a week
I felt I should be with you all the time
But you were so needy, so demanding
I fell into depression after each visit
Took me a day to recover
And as your end drew near
I was burnt out, spending less time with you
Just when I should’ve spent more
Lifestyle
For decades, I’d developed a healthy, self-reliant lifestyle
But flying back and forth to care for you
I lost most of this
Eating at restaurants, sleeping erratically
But where and when I could, I tried
Joined a gym near your house
Bought ergonomic furniture
For your bedroom upstairs
That became my office and music studio
I’d injured my knee a few months before this started
My shoulder, with a rotator cuff tear
Was waking me up at night
Over the next year
Both injuries went untreated, got worse
I exercised when I could, but steadily
I lost weight – muscle mass – and strength
As I hiked less, my stress increased
And I lost cardio capacity
Helping you required constant heavy lifting
In awkward positions, hurting back and shoulder
Stress increased sensitivity to pain
Headaches several times a week
And as my pain increased
My intake of pain meds increased
Their effectiveness decreasing
But I couldn’t have done it without them
Creative Work
Before your demon came
Summer before last
Leading the ceremony for Katie
My long-lost partner that you loved
I rediscovered songwriting
After years of crises, traumas, interruptions
I always thought I needed an extended period
Without distractions, like weeks
But after I began caring for you
I found I could write, arrange, record tracks
In a half-day or evening, in between
Caring for my family
I brought my travel guitar to Indianapolis
Bought a mini-keyboard
It was slow getting started
But with practice, I found myself
Thinking about my work in a parallel track
Behind whatever I was doing in the foreground
That made it go faster
So far, in the past year
I’ve written more new songs
Than in any year since 1980
I rediscovered nearly 200 unused lyrics in my files
And have set many of those to music already
As I lost the ability to hike
That creative breakthrough is what kept me motivated
Became my reason to live
I brought my guitar on visits
Sang and played my new songs for you
You became my best audience
The Work Ahead
What you and I went through
Is precious
Needs to become part of my work, my art
This will take time
You haunt my house now
I have your things, the things you loved
That brought you comfort or surprise
They retain your spirit
All I want is to leave
I don’t know where I am
Or where I’m going
I want to fill my house with your things
I’ve started a shrine
But I can’t look at them, they make me cry
I assume that at some point
I will resume the routines that kept me healthy and fit before
But I can’t do that now
I have to understand what happened
You remain inside me
And all around me
You’ll always be the most important person in my life
I’m not trying to move on
Not trying to forget or get past what happened
Hospice, and a local acquaintance who calls herself a death doula
Offered to help me with grieving
But I don’t accept that word “grieving”
It doesn’t describe what you and I went through together
And who I am in the aftermath
As a seeker
I sought the pain, I needed to experience it
The last thing I want to do is get past it
My doctor offered an antidepressant
But as an artist, I need to feel the pain
So my work remains honest
Sooner or later, what I experienced
Will come out in my work
That’s the kind of art I do
That’s what I mean by art
Next: What Are We To Do?
Letters to My Mother, Part 5: What Are We to Do?
Thursday, January 29th, 2026: Letters to My Mother, Problems & Solutions, Society, Stories, Trouble.
Previous: I Tried to Help
Life and Death in Long-Term Care
Beliefs, Plans, and Denial
Our Family
Papaw, my dad’s father
Died quickly, in hospital
Of heart failure
Mamaw, his wife, widowed and living alone
Began hallucinating
Her son flew back and tricked her into a nursing home
Said they were going to the doctor
Aides grabbed her from the car
She died miserable, among strangers
My grandpa, your daddy
Died suddenly at home
Of a massive heart attack
Your mother, my grandma
Voluntarily entered a nursing home
Thrived there, singing, comforting
Cheering the other residents
My dad, your first husband
Found freelance home helpers by word of mouth
Paid them minimum wage
Lived at home, managing his own affairs
Until he died during a final trip to the ER
You never made plans for the end of your life
Refused to talk about it
Said you would never leave your home
Would rely on home help when the time came
I believed you irresponsible, living in denial
Until I realized that in the culture of our ancestors
Traditions in family and community
Provided for the end of life
Individuals were not forced to figure it out for themselves
My Friends
In our society, you were at one end of the spectrum
Some of my friends are at the other
Always worried about the future
They devote time and energy to planning for their end
One friend worries about dementia
Worked to create legal provisions for assisted suicide
If he begins to lose his mind
But as we found
Mental illness can defy science
Losing your mind
You could still think and remember
You were afraid to die
And you fought for your life, even while unconscious
What would the law say about that?
Is it really possible to plan for losing your mind?
Other friends prepare for the end of life
By buying long-term care insurance
Implicitly planning to spend their final days in facilities
Like the ones that failed us
Some voluntarily move into “retirement communities”
When they get tired of maintaining their homes
Long before they actually need home care
They like the idea of having care
Available onsite when they need it
With visions of daily golf or bridge
They don’t mind being sequestered among other old people
Isolated from community, families, and youth
Having spent two years
Seeking and working with the kind of care
Many people expect to be available
I believe we’re all in denial
With healthcare and elder care commodities
In our statist, capitalist, bureaucratic society
The kind of care many expect simply doesn’t exist
And often, we are forced into situations
We never could have planned for
Hospitalized with a sudden, unexpected crisis
Suddenly ending up in permanent long-term care
My End
As someone whose quality of life
Depends on hiking and making music, art, and stories
I want my life to end
When I can no longer do those things
I want my life to end
Before I become dependent on the care of others
The rural Irish lived in homes
That included apartments for their elders
When the elders were too old to tend the farm
They moved out of the main house
And became advisors to the young
Traditional societies around the world
Facing limited resources
Condoned suicide by elders
Who could no longer care for themselves
Stories of grandparents jumping or thrown off cliffs
Abandoned on ice floes
Trudging off alone in winter
In our colonial culture
Suicide is such a deep and strong taboo
Science is discouraged from studying these practices
And with our deep puritanical bias
We outlaw voluntary drug overdoses
When friends ask
I tell them when the time comes
I’ll just walk out into the wilderness
But what if it’s too late
And I can no longer get there on my own?
Healthcare Realities
Doctors and Hospitals
Your primary care doctor retired
Just before your final crisis began
Her office made no attempt
To find you a replacement
Our loved ones’ decline often begins in a crisis
Where they end up in the ER
The emergency department of a hospital
The goal of the ER is to rush a diagnosis,
Treatment, and discharge
Frequently, they’re wrong
A loved one must be onsite
To ensure you’re adequately examined
Safely discharged to a place with adequate care
Receiving timely follow-up with a physician
If a patient is in danger of dying
Staff will ask
Do you want us to save you?
This is called Full Code
Involving CPR, intubation, defibrillation
Breaking ribs, puncturing lungs
Risking severe disabilities
If the patient is hard of hearing or confused
By strangers and an unfamiliar environment
They will typically agree
This decision is impossible for family to change
Doctors agree it’s wrong, but that’s the system
If the patient is unable to make a decision
The nurse on hand calls and wakes up next of kin
In the middle of the night, demanding an immediate decision
When your condition is critical
But you need more than a few hours
Of testing and treatment
They admit you to Med Surg
It’s a catch-all unit
Where your case is supervised by a hospitalist
Coordinating a team of specialists
But not all hospitals have all the relevant specialties
And in our colonial society’s reductive paradigm
Specialists have no interest in
Or knowledge of other specialties
They regularly claim authority
And make false conclusions, even let patients die
Based on ignorance
And a narrow perspective
If the issue is behavioral or mental
A hospital psychiatric unit should be the last resort
These units are designed like prisons
To restrain and prevent violent behavior
Because you had no PCP during your crisis
When you were discharged from hospital
There was no follow-up
No confirmation that diagnosis was correct
No confirmation that treatment was successful
Money and Care
Some people will assume that our problems
Resulted from limited and substandard healthcare
In our hometowns
The capital of a notorious red state, and a remote rural town
Many people assume the best healthcare can be found
In affluent enclaves in New York, Boston, the Bay Area, Los Angeles
Minneapolis or Phoenix, with their Mayo Clinics
But the real picture is much more complicated
Yes, I had to fly to Seattle for specialized hip surgery
And to San Francisco for nonsurgical foot treatment
I could afford that, even in my low-income bracket
So there was no need to live in those places
Critical patients in small towns are always referred to cities
For specialist treatment not available locally
But you had an excellent heart surgeon in your Midwestern city
And our small-town psychiatrist was likewise exceptional
Home Care Realities
With few exceptions, our homes and our parents’ homes
Are not designed to be accessible
And most could not be adapted for parents with mobility issues
Parents who need outside caregivers
Requiring their own space and facilities in the home
Our ancestors cared for their parents at home
The architecture and skills handed down by tradition
I yearned to restore that tradition
But dreaded the need when I saw it coming
Our society fails to train us to be caregivers
Like everything else, caregiving is commodified
With low pay, high burnout and turnover
Home care agencies abound in every community
But unless you can prove low income and assets
Qualifying for Medicaid
Private pay is your only option
$30-40 per hour
My dad found freelance home help by word of mouth
Most of them were adequate
For you and your disabled son, I hired an agency
Most caregivers, supposedly trained
Were hopeless and had to be replaced
Nearing the end, when you needed 24/7 monitoring
An agency promised that home care was an option
We agreed on 8 hours per day
With me taking care of you during the remaining 16 hours
But at the last minute
Discovered caregivers are unavailable overnight
On weekends or holidays
So when could I sleep, or take a break?
Forget about overnight trips or vacations
Care Home Realities
Types and Differences
Depending on our degree of independence and need for care
Our colonial, statist, capitalist, bureaucratic society
Offers a spectrum of facilities
As service commodities we can purchase or qualify for
Depending on our financial status
These facilities are most often designed
To offer a continuum of care
In which we can progress from more independence
To more care, as we decline
And most are owned or franchised
By national or regional corporations
Those who actually prefer to age among their peers
Sequestered from the rest of society
Can move to a facility with private homes, duplexes
Or apartments where “seniors” can live
As independently as they please
These are called retirement communities,
Senior living, independent living, etc.
Both my parents experienced health crises
After which they were discharged to a short-term rehab facility
Intended to prepare them to return home
Rehab is basically a skilled nursing facility
A short-term nursing home, part of the continuum of care
So that when a patient fails rehab, they can move directly
Into long-term care
And short-term rehab is covered by Medicare
Assisted living refers to an apartment complex
Where residents can live independently
With onsite access to as much care as they may need
Assisted living facilities may stand alone
Or may be part of a continuum of care
For qualified low-income residents,
Room and board are covered by Medicaid
In the facilities I reviewed
Private pay can range from $3,000 to $9,000 per month
Large corporate facilities at the low end
Small privately-owned facilities at the high end
Memory care refers to long-term residential care
Primarily for those diagnosed with dementia
But as your case showed, they may accept
Anyone struggling with behavioral issues
These are secure units
Typically requiring a keypad code for entry
They may be designed more as homes
Or more as skilled nursing facilities
In any case, memory care facilities may stand alone
Or may be a unit within a larger continuing care facility
Again, Medicaid pays for room and board
And private pay ranges from $10,000 monthly
Those who need help with medications
And activities of daily life (ADLs) in general
Such as dressing, toileting, hygiene, and feeding
Typically end up in long-term care
A skilled nursing facility
Traditionally known as a nursing home
With rooms like in a hospital
Shared or private
For those unqualified for Medicaid
Private pay ranges from $10,000 per month
The larger urban facilities we encountered
Encompassed all types in one building:
Short-term rehab, assisted living apartments,
Memory care and long-term skilled nursing units
Finding a Facility
Image Versus Reality
National magazines with retired subscribers
Have always been full of ads
For supposedly elite elder care facilities
Mostly in the East
My Stanford alumni magazine has glossy full-page ads
For “senior living communities” in affluent enclaves
Like Carmel Valley
But the places with big advertising budgets
Are the places that are not good enough
To survive on word-of-mouth
That’s the way advertising works
And even if we got our parents into one of those places
We wouldn’t be able to visit them regularly
Some believe that more money
Will get you better care
That’s how we’re indoctrinated
In a capitalist economy
But that’s not what I found
The best places I found are the smallest and hardest to get into
They may or may not be the most expensive
But because they’re small
The elite homes
Soon become confining, claustrophic
I suspect the really rich
Are able to offer incentives and accommodations
For paid, live-in caregivers at home
I’ve driven past, and been referred to
Huge facilities with hundreds of apartments or rooms
Landscaped grounds, vegetable gardens
Bistros, pools, theaters
I would never place a loved one there
The best places I found in Indianapolis and Tucson
Were private homes staffed by the owners
And small, locally-owned facilities
Designed around family-centric models
But all those had waiting lists
And because you weren’t able to plan ahead
Our needs were urgent
We had to settle for places with immediate openings
Our Experience
In your metro area of Indianapolis
With a population of nearly a million
An online search returns about 20 elder care homes
The search for Carmel, the affluent northern suburb
Returns an additional 15
There will be lower numbers for suburbs
To east, west, and south
Hence, for a big city
Dozens of options within weekly driving distance
But due to uneven property values
Typically located far from our homes and workplaces
Most of these follow the “continuing care” model
With units for rehab, assisted living, memory care
And long-term skilled nursing
Like most – maybe all large cities
Indianapolis has placement agents for elder care
An agency I worked with has “scouts” for each part of the city
But they only provide placement at large corporate chains
Tucson, with the same population as Indianapolis
Has an agent that will identify and show you
Options to meet your specific needs
At a broad range of facilities
From corporate chains to private homes
Overwhelmed by choices
And the unreliability of online ratings
I followed personal recommendations
From people I trusted
But was disappointed anyway
Life and Death in Long-Term Care
Management
All the management I dealt with
At every facility
Showed two faces
Friendly and caring at first
Then, if family takes a close interest in their loved one’s care
Management reacts to suggestions defensively
Reacts to issues offensively
Blames resident or family
Before considering their own responsibility
They all exhibited a top-down culture
In which management behavior
Was imitated by staff
Dishonesty, manipulation, and retaliation were common
Management always spoke with authority
Of residents’ conditions and mood
When they never spent time alone with residents
Never engaged residents in substantive conversations
They get away with all this
Because it’s a seller’s market
They have waiting lists
Can reject you and move on
Family Relations
Again and again, I’ve heard from friends
About what a wonderful home they found
For their parent
And over and over, in care facilities
I’ve met residents who are lonely and bitter
Because their loved ones abandoned them there
And seldom if ever visit
I did meet a few – less than ten percent
Who say they’re content
In my grandparents’ generation
If elders went into a care facility
Their children and grandchildren
Lived only a few blocks away
Visited after work or school
In our highly mobile society
Where families are dispersed across continents
Sometimes across oceans
Children are used to going months
Without seeing their parents
Most care facilities are designed to replace the family
Encourage residents to trust staff
Attempt to foster community among residents
Why do families accept that?
Because most families have no room for elders
They have careers, children of their own
Or want to enjoy their retirement
Visit their loved ones only at their convenience
In our blind worship of progress
We’ve abandoned native traditions
Elders no longer accumulate stories and wisdom
That could help us and keep them engaged
Different facilities have different policies
Some allow visits 24/7
Some provide meals for visitors
A few may even have overnight accommodations
Many facilities, designed for staff convenience
Create barriers against both visits and outings
Long walks from parking
Long interior hallways
A series of locked doors or gates
Some requiring staff to open
Others, like your final home
Only allow visits during limited hours
Don’t allow family to share meals
Conditions
Facilities are typically designed and managed
For staff convenience first
Resident comfort second
At the time in your life
When you’re least resilient, least adaptable
These facilities force you into a schedule
For their own convenience
Confusing you, making you feel helpless
The hearts of these facilities are the nurse’s stations
And the dining rooms
Once you’re identified as a fall risk
Fearing liability, institutions will confine you to bed
Limit your mobility to a wheelchair
May even confine you to the nurse’s station
Sleeping all day, slumped in your wheelchair
The hearing impaired
Can’t communicate adequately with staff
So their health conditions
Are never fully known or treated
And they’re frustrated in group activities and events
Many facilities advertise chef-cooked meals
Made from healthy, fresh, even local ingredients
But even at the highest-rated facilities
This is often merely marketing hype
The only way to tell is to visit at mealtime
Day in and day out
Who can do that?
Even the best facilities lack the ability
To offer personalized food
On a personalized schedule
Dysphagia (difficulty swallowing)
And aspiration (accidentally inhaling while drinking or eating)
Are common among elders
We can easily train ourselves
To eat and drink safely
But with the liability of choking
Institutions force residents onto a pureed diet
Where, unable to recognize their food
They lose weight and weaken
You literally starved to death
Because your home could not give you
What you liked, when you needed it
Many homes have no way
For residents to call for help
Even with call buttons
With 8-12 residents per aide
It can take up to 45 minutes
For a resident to get help
Lying in a soiled bed
If you yell, staff get angry
Or make fun of you
Good staff are hard to find
With high burnout and turnover
Some are good at what they do, and care
Many of them are studying, for higher pay
And will move on soon
Most are just burnt out, collecting a paycheck
What they call activities and entertainment
Are designed for the lowest common denominator
Bingo, juvenile cliches, celebrities
Insecure, embarrassing volunteers
I always found wonderful people
Both staff and volunteers
Who deserve endless praise for showing up
Giving their heart, soul, and time
But they were in the minority
Hospice
When you are admitted to hospice
You fall under the care of a doctor you will never see
Their primary function to prescribe medications
At the request of a nurse
Who visits you weekly
Under Medicare rules
You’re ineligible for most therapies, treatments
Or visits to doctors
You can still get them on a private pay basis
For us, the result was that I became your doctor
I saw you the most, spent the most time with you
Since I was the only one you trusted
I had the most accurate experience of your symptoms
I studied and requested your medications
If I hadn’t been available
Symptoms would’ve been missed
Your care would’ve suffered
Our big-city hospice provider was wonderful
Professional help available 24/7
On call nurse within 30 minutes
Social worker helped find resources, completed paperwork
Small-town hospice had limited staff
Completely lacking some functions
No help in a crisis
Their social worker a disaster
We loved your hospice nurses
And some of your hospice aides
Who came to bathe you two or three times a week
Provide personal care as needed
Hospice promises to provide comfort at the end of life
I discovered that was a lie
Not even morphine could relieve your suffering
In the final days
Closing the Cycle
The colonial tradition brought by our English founders
And still observed in conservative families
Is to preserve the body by chemical embalming
Hold an open casket funeral for viewing by the community
Followed by underground burial officiated by a pastor
With the goal of protecting the physical body
From returning to its natural elements
Indigenous societies worldwide
Implemented a variety of practices
Ranging from burial to abandonment and cremation
Our bodies came from the earth
Evolving and rebuilding constantly
From the resources we ingest
Ultimately originating in nature
Clouds, rocks, rivers, soils, plants, animals
Burial and cremation, while practical in some habitats
Deny nature the resources she gifted us
This is recognized today in colonial society
By a tiny minority in the natural burial movement
You asked for cremation
I planned to honor your wishes
But when the time came I was unprepared
Had no idea what would happen
I had to choose a funeral home
The funeral director came, I had to leave
They took your body away
Put you in cold storage, as found
I had to get permission from the state
To have you cremated
I waited all week
Wanting to be with you
I vaguely knew that in our ancestral tradition
Family and others from the church
Washed, dressed, and casketed the body for burial
I had no idea what would happen to your body
Wanted to be a part of that
But had never been trained
It turned out that you would just be conveyed from storage
Into the chamber, for incineration
By strangers
Burning and cooling would take hours
I thought of waiting outside
But it’s a big building
There would be nothing to see
In the end, I received your ashes
In a plastic bag
Inside a plastic box
Human Nature
An institution is only as good as its people
What happens to the people
When society itself is dysfunctional
And its institutions are failing?
The villains of your story
The corrupt police and prosecutor
Your troubled second husband and his insecure daughter
The arrogant, ignorant doctors and facility managers
The cruel and thoughtless aides
They all hurt us
In some cases terribly
In some cases repeatedly, over time
But we understood them, you and I
None of them is all bad
Like you said, most of them were two-faced
Sometimes kind, sometimes cruel
Insecure, damaged people
Taking out their own fears on the weak, the helpless
Their jobs some of the most difficult
Shouldn’t be jobs in the first place
Should be traditional roles in a healthy community
Not careers in an economy
What Are We to Do?
Our statist, capitalist model
For elder care as a commodity
The result of what we believe
To be generations of “progress”
Works no better than our other institutions
The only healthy way to care for elders
Is within healthy families
Within healthy communities
Which our society fails to create or cultivate
Which our “progress” actively destroys
Via technologies of mobility and long-distance communication
What we are left with is institutional care
Subsidized by the state at generally low standards
Or purchased by us at from $36,000 to $144,000 per year
Depending on the level of care we need
A decade ago
I fought your husband’s estate
For a settlement that would keep you secure
But there was no way I could predict
Your ultimate needs
During your last year
When you were nearing the highest level of care
Not knowing how long you would last
I worried about running out of money
I assumed that if you had a prognosis of a few weeks
And if I could find home help
We could afford to keep you at home
But in the end, home help was only available
During regular business hours
Leaving me on duty overnight and all weekend
I assumed that if you had a prognosis of a few years
We could afford to keep you in a care facility
But science can’t provide a prognosis that accurate
I believe that as families
The closest we can come
To a healthy traditional model for aging and dying
Is to provide lodgings for our elders in our homes
And when they need care, to enlist family
And community, providing care in the home
But since technology disperses our families
And capitalism leaves us burnt out
And isolated, on a fixed income
When our elders need care
This model is only available
To the very wealthy
Based on our experience
The second best model is emerging
In large metro areas
Families who convert their homes
Into private elder care facilities
With typically 4 to 6 bedrooms
These facilities are in great demand
And typically have long waiting lists
Sometimes years
Hence they’re not options we can rely on
Because who can plan
When their elders will need help?
For those of you who worry about the future
What’s your plan for civil war?
What’s your plan for economic collapse?
Science could not explain or treat your suffering
Drugs could not relieve it
Care homes could not provide loving care
Hospice could not comfort you at the end
Society does not allow our bodies to return to nature
What are we do to?