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
Were awarded 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
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, ballet, 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