Stories
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?
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