15 April 2012

Another night of fitful sleep and now awakening to harsh, jarring news: my mother is dead. And worse, it’s my fault.  

Her death has been a long time coming. My entire life.  

My mother, appropriately named Rose, was high-maintenance long before anyone coined the term. At her best (rarely), she was a lovely embodiment of compassion and caring. At her worst (frequently), she was intractably difficult and completely relentless about getting her way.  Thorny, you might say.

In the autumn of 1954, my mother had the misfortune of contracting a terrifying virus that had gripped the country in fear. Paralytic polio. At the time, adult-onset polio had a 75% mortality rate. Essentially a death sentence.  

My mother survived, eventually learning to walk from scratch with her formerly glamorous legs encased in ugly steel braces. She chose Canadian canes for balance because they forced her petite frame to stand straight. And four years later, at the age of 37, she gave birth to me: the bane of her existence.

The next five decades were defined by extreme hardship and struggle, which only strengthened my mother’s resolve and fierce determination to remain independent. To be anything less than fully independent was, in her view, a fate worse than death. And far worse than polio, which had robbed her of everything that mattered, including high heels.  

The harsh landscape of our lives, shaped by grinding poverty and a tsunami of misfortune, ensured that neighbors steered clear of our cursed blue House of Sorrow. 

That is, until one of our industrious neighbors started working at the Rock Island County Courthouse. Suddenly, someone living two doors down from us had full access to both the mundane and malicious minutiae of everyone’s life. Including ours. Every sordid detail dutifully recorded and stored for future reference. And gossip.  

So Marjorie, decades ahead of her time, became a major neighborhood influencer, airing the tawdry details of our lives next to the cotton sheets and towels drying in backyards up and down the block. From one clothesline to the next, scandal traveled between bored housewives at the relentless speed of shame. Laundry day was the official day of reckoning. Airing grievances.  And keeping the spin cycle going.

And because life in our house was largely a matter of public record, we were always in the spin spotlight. Whether it was my father being arrested and hauled off to jail after “accidentally” glancing my mother’s eye with his fist, my parents’ acrimonious breakup (note that I did not say marriage, because as I–and the entire neighborhood–would later learn, they were never married), or the bombshells that followed (spoiler alert: my charming father was a bigamist), every sleazy detail of their destructive decade together served as a cautionary tale of love gone awry.    

More facts from the public record: my brother was born with severe birth defects that left him profoundly mentally retarded. After setting fire to our house (it was quickly extinguished; no harm done), Eliot was summarily shipped off to the notorious Dixon State School for his (more likely my mother’s) safety. Nine years my senior, Eliot was a ghost sibling. Someone who existed in theory. And bad memories.

Meanwhile, my uncle, haunted by PTSD and carrying a souvenir bullet from Guadalcanal next to his brain, lived in the attic of our tiny wood frame house. For a few years. After a car accident left him physically incapacitated, he was placed in the local nursing home.  And my grandmother actually did suffer a catastrophic stroke while stirring boiling water and strawberry JELL-O, the exploding mixture spraying the howling infant sitting in a nearby high chair. Me.  Granny would survive, in a vegetative state, for sixteen more years. And I would avoid red JELL-O for the rest of my life.  

Perseverance is our family motto.

And me, well, I was literally the only one in the House of Sorrow with both a working brain and working limbs. Which made me feel like a complete and utter freak. Still, I was determined to survive my decidedly odd upbringing. Because that’s what we do in this family: we survive.  

Plagues. Poor choices. Catastrophes. Bullets. Grinding poverty. Exuberant rage.  Unremitting regret. Bring it on. We can take it.   

Halloween 2006

“If you hadn’t brought her to the hospital, left untreated, she would have died within the next twenty-four hours. Peacefully.” The adolescent intern’s displeasure over having to revive a nearly dead geriatric patient with zero chance of full recovery is clear. He continues:

“Now she’s going to survive. Which is very unfortunate…for you.”

Yes, I know all about unfortunate situations. Trauma defined my childhood. Adolescence. And adulthood.  

“So what happens now?” I hate the pleading tone of my voice. 

I need options. Rewind the clock. Unfind my mother in her apartment, babbling incoherently. Unlearn that a severe UTI had evolved into a kidney infection which had gone into sepsis. Undial 911. Unsummon an ambulance. Just stop compulsively doing the “right” thing.  Like moving her to Tennessee decades after I had escaped the House of Sorrow. The “right” thing is always the wrong thing, I’ve learned.  

“There are no good options in situations like this. She’s simply going to…linger…sorry.” And then something about needing ‘custodial care’ for the rest of her life. Before I can respond, Doogie Howser is off to deliver bad news to another unsuspecting family.

My mother always survives. She will go on long after roaches become extinct. She will turn out the lights a half-hour after Armageddon. She will not succumb to the vagaries of life in this godforsaken suburban hospital emergency room. That would be too merciful– for both of us.

But this time it isn’t about survival. It’s about lingering. Which has a sinister undertone.  Linger. How long? My brother lingered thirty-two years in a hellhole. My grandmother lingered sixteen years. Linger is just another name for limbo and limbo is another name for hell.

 Spring 2012

“Your mother is flinging crap at people and it has to stop,” demands the voice on the other end of the line. It’s the nursing home (custodial care) administrator. I am intimately acquainted with Liz’s beleaguered voice. And I also know what’s coming next. We’ve done this dance many times.

“You’re going to have to find another facility for her.” Liz has switched to her “stern” voice, but we both know this crisis du jour will quickly be replaced by another crisis, and as long as the checks keep coming the first of every month, my mother will have a bed. Because the only way anyone leaves the “home” is in a body bag. And recent outbreaks of H1N1, followed by C-Diff, and then everyone’s favorite bacterial nightmare, MRSA, have required a lot of body bags. Between infectious diseases and a recent less-than-stellar state report on staffing and hygiene practices, the resident population is way down. So, crap flinging or not, mom isn’t going anywhere. Still…

Less than an hour later, I dutifully arrive at Mayfield (exhibiting disdain for my mother’s outrageous behavior while displaying a repentant posture toward Liz) and learn the crap that my mother is flinging at staff is not the usual verbal form. It’s the real deal. A new and disturbing turn of events in a world of alarming events.

“Why are you doing this, Mom?” Deadbeat daughter bracing for battle in Room 204.

The shriveled, hunched figure sits with her back to me. Staring out the window, a lifetime of rage–and tragedy–etched across her remarkably unlined face. At 90, she looks younger than her middle-aged daughter.

After a minute of strained silence, Mom swings her wheelchair around, her faded but still penetrating hazel eyes glaring. I instinctively take a step back. The rage is palpable.

“Stupid question. You know the answer.”  

She hates living in a crap factory where orders to increase fecal output among patients are common. If they’re going to manufacture crap, patients might as well fling it at them. Job well done, Mom. But she also refuses to die. Instead, she lingers. Like that jagged scar above her eye.  The scar from that day in 1964 when The House of Sorrow officially collapsed after my father went to jail. Damn that day. It refuses to stay in the past.

Eleven hospitalizations. Pneumonia. Kidney infections. Strokes. Sepsis. Rinse and repeat.  Dozens of doctors promised each crisis was the end (it wasn’t). Deathbed confessions (yes, I know I’m illegitimate, thank you). Enough diagnoses–and eleventh-hour recoveries–to fill a geriatric textbook had left me with one certainty: I will precede my mother in death. And that’s okay. I welcome death.

But that is not how this story ends. Instead, it is me, the eternal caregiver, who will be the agent of my mother’s death.   

11 April 2012

Respite care. It sounds almost magical. Respite. Care. Yes. That’s what my mother needs.  More importantly, it’s what I need. Respite. From all of it. 

The county crap factory, now severely understaffed due to an upscale facility opening just down the street, has become a dangerous place. Liz is gone. Fired shortly after the shitstorm.   Replaced by Darrell. Who is replaced by Donna. Who is replaced by…nobody.   

Shards of broken glass are scattered atop my mother’s nightstand (roving dementia patients roam the halls and wander into patients’ rooms and break things). Spoiled food stinks up the mini-fridge in her room. Petty cash is missing from her purse. Nobody changes her Depends.  The collective neglect is taking a toll. On both of us.

Most of the already meager staff are gone, lured away by promises of a two-dollar-an-hour pay increase. And health insurance. A luxury incentive.  

Enter the local hospice program. They have a plan for my mother, promises the hospice social worker. The interim (twelve hours) administrator is here to advise me on how to “help” my mother. Translation: they’re down to two techs per unit and my mother, who eats techs for breakfast, is a handful. They want her gone.

Hospice will generously provide five days of respite care while I look for another facility to take my mother.   

But her doctor says my mother is not terminal. She’s just old and in pain, I remind the perfectly manicured social worker.   

“No worries.” The child social worker smiles sweetly. “Respite care is for anyone who needs our services.” Anyone defined: elderly patient on Medicare, which pays handsomely.  

Later, I will learn that the Justice Department is officially investigating hospice’s questionable (read: predatory) practices, like trolling senior centers and nursing homes for prospective clients needing “respite care.” And buried in the mountain of forms one must complete before their loved one can be admitted are the words “standing orders,” which authorize nursing staff to administer psychotropic medication PRN (as needed). Chemical restraint is standard operating procedure. Necessary. And in many cases, deadly.

But today, I am only seeking respite. So I fill out the Kafkaesque paperwork authorizing Medicare payments to hospice, and soon, my non-terminal mother is officially placed in respite care.  

Within hours of being admitted to hospice, my mother is agitated. The solution: inject Haldol. Repeatedly. Now she’s confused. Administer Ativan. Repeatedly. Then she can’t sleep.  Bring on the Temazepam. Now she’s having nightmares. Double down on the topical morphine gel. The staff need respite.

In less than forty-eight hours, my mother goes from alert and oriented to unresponsive. 

“Staffing shortages mean disruptions of any type cannot be tolerated,” explains the charge nurse when I confront her about my mother’s altered state. “People are in hospice to die quietly. That’s where ‘standing orders’ to medicate come in.”  

Except the cash cows of the hospice industry–those in respite care–are not dying quietly.  Mainly because, well, they’re not dying. Instead, they are conscious (read: disruptive) and therefore have to be quieted. By any means necessary. Including employing chemical restraint using psychotropic medication like Haldol in spite of the fact that it carries a black-box warning about use in geriatric patients.

“Do not give her any more medication of any type.” I am livid. Instead of apologizing for nearly euthanizing my mother, Nurse Ratched demands to know if I have medical training, if I’m in a position to make that call.  

“I was born in that position,” I snarl. I am a lifelong caregiver. This is my calling. My life. And my death. Of course I effing know.  

Except that I didn’t. Until informed, I hadn’t known they were injecting my mother with Haldol and Ativan every time she called out for help. I have a graduate degree in clinical psychology and I’ve been trained in the use of psychotropic medication, so I should have recognized the signs. I have expertise. Mistakes (four failed marriages notwithstanding) do not happen to people like me. Childhood trauma teaches us to avoid mistakes. Mistakes are bad.   Often deadly. Must not make mistakes. Ever.

After a full day without medication, my mother slowly emerges from her drug-induced coma. I will take her outside tomorrow. She can get some fresh air and enjoy the sunshine. She nods. Mumbles incoherently. A brief visit. 

Before leaving, I take her frail gray hand in mine. I will fix this mistake, I promise. I know how much she hates medicine. I know her fears. I am so sorry. This should not have happened on my watch.

She is dozing again. I can’t rouse her. So I leave her to sleep off the residual effects of the drugs that neither she nor I approved. Or were even informed about.  

Tomorrow will be a better day. She’ll go back to the nursing home just long enough for me to find a better facility for her. I will figure this out, just like I have figured out her care since I was a child. She is my responsibility. The child I didn’t ask for. 

At midnight, I call hospice for an update. A more conciliatory nurse assures me that my mother actually woke up an hour ago. She even asked for a cup of tea, which they gave her. Can I talk to her? No. She’s asleep again.

Eight hours later, she is gone. Dead. Drug overdose.   

Heavily drugged and surrounded by strangers who sacrificed compassion for convenience is not how I saw my mother’s story playing out. Nor the tragic sidebar: the official secondary cause of death, inanition (starvation). My 82-pound mother, drugged to the point of unconsciousness, ate nothing for four days. She was essentially euthanized. Because we sought respite from the tragedy of lingering.

Dying is a grim business. And dying in slow motion is a unique brand of hell. But that didn’t give hospice the legal, moral, or ethical right to unilaterally decide when, where, and under what circumstances my mother’s story ended.

Our story, already painfully complicated, was not supposed to end this way. I was supposed to be present during the final moments of my mother’s life so we could say goodbye. She would assure me that, in spite of our glaring differences, I mattered to her. That she was grateful to her child-parent. Most of all, she would grant me absolution for the sin of lifelong indifference to her pain.  

Instead, my mother, shackled in chemical restraint, died alone. Unaware that I sat at her bedside every day. Her death, according to official hospice spin, was simply a “sudden event that just happened.” A random occurrence. Like life. And other tragedies.

“Is anything–not even happiness but just not torment–possible?” bemoaned a despair-filled Anna Karenina. No, I would tell her, the luxury of peace is not possible for those of us born in the House of Sorrow. But forgiveness is. And so our story ends with an abiding hope for absolution–and to live the rest of my days far from the shadow of sorrow.