Improvising Reality

Dementia - and the Future - Has No Script

Lionel Shriver’s The Mandibles depicts the trials of an inter-generational family following America’s economic collapse.  In 2029, after decades of ballooning national debt and quantitative easing by the Fed, the world ditches the dollar as the international reserve currency in favor of the bancor: a competing currency backed by oil, metals, and farmland. The results are cataclysmic for both the Mandible clan and the whole of America.

Nearly overnight, the family’s wealth vanishes as the value of the dollar does a kamikaze dive.  Our government launches a “universal reset” in which Treasuries are voided and every citizen’s privately-owned gold is seized, down to the flimsiest wedding band. Cash dollars are prohibited from leaving the country lest they be converted to bancors on foreign exchanges.  All of which occurs in a maelstrom of Weimar-style hyperinflation and rampant unemployment.

Shriver portrays each family member’s descent into denial, then despair, then cold-blooded desperation with savage glee.  The family patriarch, Douglas Mandible, is a 98-year-old former literary agent and bon vivant, a dinosaur who came of age when people still read books and traded quips at cocktail parties. When the dollar tanks, Douglas is living in a chi-chi retirement community with his second wife, Luella, stricken with early onset dementia; she is delusional, incontinent, and destructive if not outright violent.   Consequently, she requires paid nursing – another “luxury” obliterated by the dollar’s crash.  Forced to care for Luella themselves, Douglas and his children become so exhausted by her delusions that they surrender to them:

Luella was convinced that she’d been kidnapped – as in a way she had been – and that [Douglas’s first wife] had plotted the abduction.  They must have tired of putting her right – “No, honey, this is Douglas, remember? And this is his son Carter, who’s my husband, and you’re staying in our house . . .”  So instead they played along.  It bordered on sadistic.  Jayne might say, “We’ve delivered our demands, but your husband is broke.  You’re on your own.” [Douglas] would toss in playfully, “No, no, ransom’s on its way, my dear.  Four fat Social Security checks, thousands apiece! Each of which will buy a sandwich!”

Shriver’s characters are maliciously funny.  But indulging a delusion needn’t be sadistic.  It’s a lie, certainly, but a lie that comforts and quells terrors can be a noble lie.  And not even a lie, exactly: more of an improvisation, like stepping into a strange, often nonsensical reality and playing with and expanding its parameters.

The first rule of improvisation, after all, is “Yes, and . . .”. 

I should know.

The Weirdness of Winging It

Recently I found myself on my knees beside a hotel room bed, praying that God grant me wisdom and strength enough to finalize my father’s move to memory care, while also looking after my mother, who is losing her mind to dementia at home. “This is new territory for me,” I told God.  “My parents are out of control and I’m overwhelmed.  Give me the words to take care of them. Give me the actions to take care of them.  Make me your meat-puppet.  That’s all I ask: to be your meat-puppet.”

That morning, my father was transferred from the hospital where he had been receiving treatment for heart failure directly to the memory care facility, days ahead of schedule. I had scrambled to execute last-minute paperwork and deliver a suitcase of his clothing (all of which I had hurriedly labeled with a Sharpie) to the facility in time.  I had struggled to keep my addled mother calm and explain to her, for the hundredth time, where her husband was. 

I was still praying when my cell began to ring.  It was the memory care facility.  I took a deep breath and answered.  To my surprise, the voice I heard was my father’s.  

“Daughter,” he croaked.  “Help! This is an emergency!”

Over my cell I could hear the dryness in his mouth, the stickiness coating his tongue and lips, as well as the clucking of nursing staff in the background.  

“I’m being held at the sheriff’s office on false pretenses.  On bogus charges! Two officers forced me by gunpoint to follow them here and now I’m locked up!”

Seriously, God? I thought. I mean, seriously?” It’s moments like these that rattle your faith and make you wonder: Is any of this real? Am I real? Or am I just an artificial persona trapped in the Creator’s sadistic game of Sims? (Which is why, I suppose, the Book of Job still resonates after all these centuries.).

I stared down at the ugly hotel carpeting, trying to dredge up all the expert advice about dealing with dementia delusions.  In the moment, it all seemed ridiculously generic and impractical.  Don’t try to reason with them.  Simply validate their feelings.  Then distract.  Was it truly wise to empathize with my father’s paranoia when he was squawking with rage? Wouldn’t that be adding fuel to an already uncontained fire? And how the hell to distract him over the phone? Gee, Dad, did they give you anything to eat yet? Maybe there’s ice cream!

Besides, there was a cold core of truth to my father’s belief he was being held prisoner: In a very real sense, he was.  Doors to the memory care facility were locked to residents to prevent wandering.  Seemingly without explanation, he was trapped in a strange place and not allowed to go home.  And he couldn’t go home.  His delusions and hallucinations had caused him to strike my mother, which is what landed him in memory care in the first instance.

The only solution was for me to pass through the looking glass and into his universe.

“Dad, you know I’m a lawyer right?”

“You are?” he asked, despite having funded my legal education.

“Yeah.  And I want you know I contacted the sheriff’s office on your behalf and told them I’m going to sue the living crap out of them for this bullshit.  Well, guess what? They dropped all charges against you.”

“They did?” He exhaled his relief.  “So can I leave now?”

“Not yet, Dad.  You have to wait for . . . processing.  They’ve got to enter things in their computer system, fill out a bunch of forms.  It’s going to take awhile, Dad.  I’m really sorry but you’re going to have to sit tight for a few hours until they’re done.”

“Okay,” he said, disappointed. “Will you pick me up afterwards?”

“I’ll try.”  Rarely has a lie filled me with such self-loathing.

That bit of surrealist theater bought me a couple hours, enough time to check in on my mother and for the Seroquel the memory care staff gave my father to kick in.  Yet my father kept calling, groggy yet frantic, in the grip of another delusion, then another. And with each call, I crossed over into his world, doing my best to summon the spirit of an intrepid survivalist.

I can’t believe the air force kidnapped you off the street, Dad.  I’m flying out to rescue you from that base in Alaska. It’s just going to take a day for me to get there. However clumsily, I tried to respond to his distress in ways that soothed without inciting.  I aimed to be nimble, resourceful, and – most of all – resolved to do what it took.  Bear Grylls, after all, doesn’t balk at crawling inside a camel carcass for shelter, or chugging his own urine when the mission calls for it. He knows the only reality at his disposal is the one at hand.

So I ad-libbed my way from one moment to the next, each improvisation a foothold on a climb to God-knows-where.

Improvisation in the Face of Scarcity

The Mandibles is a disconcerting read because it’s so entirely plausible.  The financial meltdown that kickstarts the novel occurs when America’s debt-to-GDP ratio reaches 180 percent.  As I write this post, our actual debt-to-GDP ratio is expected to top 130 percent by the end of 2023.  Shriver describes a future economy in which not only working class but white collar employees are widely replaced by “bots”; recently, ChatGPT-4 passed a slew of standardized professional school exams – and handily, too, scoring in the 90^th percentile on the uniform bar exam. If, like me, your profession involves research and writing, you should be a little sweaty under the collar. 

All this begs the question of what, exactly, Americans would do for a living following mass AI disruption and the dollar’s collapse. Shriver’s answer, again, is plausible.  She posits most work will involve healthcare and assisted living for the elderly. And boy, are there a lot of elderly! The Boomers loom large in The Mandibles, easily outliving prior generations thanks to 21^st-century medical interventions.  Meanwhile, their children and grandchildren tend to them in low-paid jobs, at foreign-owned retirement complexes with vaguely sinister names, like the “The Elysian”.

I’m not so sure America’s elderly would make out quite as well as Shriver paints, but perhaps that’s just my doomer mindset talking.  My parents’ dementia has forced me to reckon with exactly what it takes to live to a ripe old age while mentally incompetent.  And in my estimation, “what it takes” is out of reach for a large swath of us, here and now – never mind in some fictional dystopia.

First, let’s consider the healthcare resources required.

While the numbers vary slightly by source, studies currently show about 6.7 million seniors age 65 and older living with Alzheimer’s/dementia in 2023.  That’s around 1 in 9 seniors.  By 2050, that number is projected to grow as high as 12.7 million seniors, barring any cure.

Already, healthcare can’t keep pace with the burgeoning population with neurodegenerative disease.  There is a nationwide shortage of neurologists.  If you’re aging in a city, consider yourself at an advantage; my parents live in Placer County, California and while their town isn’t rural, it’s typically a six-month wait for a neurology appointment. Granted, their County skews old, exacerbating the problem – but hey, we’re all living longer, aren’t we?

I’ve seen various solutions floated around to address this shortage.  Incentivize neurology by raising pay; incentivize the practice of medicine as a whole by subsidizing medical school educations; remove the cap on the number of physician residencies.  All of these measures make sense. 

But the cynic in me wonders whether they would truly result in more neurologists, not to mention more primary care physicians for the elderly.  Because let’s be honest, here: As it stands, dementia is not a money-maker. There’s no pricey surgeries or therapies to reverse or even contain it.  Pharmaceuticals are of questionable efficacy and, at best, merely slow the progression of the disease.  And given the gobbling up of local providers by huge corporate behemoths (I’m lookin’ at you, Kaiser Permanente), it behooves doctors to practice in specialties that are money-makers. 

No wonder the scarcity grows more dire. When Time reported that many primary care physicians and neurologists don’t inform patients they have dementia because they don’t want to emotionally upset them, my first thought was: Well, isn’t that compassionate! My second, much nastier thought was: What a joke of an excuse.  The reason Big Healthcare doesn’t tell people they have dementia is because Big Healthcare doesn’t know what to do with hordes of patients suffering from a disease that is not only incurable, but unprofitable .

What’s more, the scarcity bleeds into other services related to dementia, however tangentially.  As I described in a previous post, my parents’ cognitive decline resulted in drinking and physical altercations with one another.  As such, I’ve had conversations I never wanted to have with Adult Protective Services.  One caseworker informed me her caseload has been overtaken by elders with dementia, engaged in various degrees of domestic violence and self-neglect – and believe me, her caseload was burdensome without the elders.  And on my recent visit to my Dad’s memory care facility, I was alarmed to find his dirty laundry strewn across the floor of his room, along with various tissues and wrappers he had dropped but couldn’t retrieve from his wheelchair.  “Staffing shortage” was the explanation they gave me at the front desk, particularly with respect to housekeeping.

So that’s healthcare resources. Now let’s consider the financial resources dementia demands. 

I’ll cut to the chase: It’s a staggering amount of money. I’ve toured my fair share of memory care facilities.  Most of them are called “manor” or “estate”, as if they house only the upper crust of the landed gentry.  The names seem improbable until you look at the fee schedules, which seem designed for aristocrats with very deep pockets.  My father’s California memory care facility, for instance, is decidedly “down-market”, with shabby-ish décor and food the caliber of a middle school cafeteria.  “Down-market” is pretty much the only option available when, like my Dad, your dementia puts others at risk of harm.  His facility has its share of hitters, kickers and screamers.  Still, his tiny studio costs upwards of $8,000 monthly, not including “incidentals” (Pro tip: most residential facilities charge extra for Depends and other incontinence care).

As for “up-market” or so-called “luxury” facilities? They will be tastefully decorated and offer a plethora of “activities” and top-notch menu options.  There will be no hitters, kickers, nor screamers in sight – only the docile senile, who are mostly female.  For these privileges expect to pay upwards of $10,000 a month; the “nice” facilities I’ve toured in New Jersey have approached $12,000.  And again, there are the “incidentals”, some so grasping as to be offensive.  On a recent tour, for instance, I puzzled over the $3.00 “room service” fees listed on the schedule.

“Sometimes our residents are too weak to attend meals in the dining hall, or they simply refuse to do so,” the facility director explained.  “So we deliver meals to them in their rooms.”

Great.  So Ethel pays three bucks every time a staffer has to take a plate of food to her.  If Ethel is feeble or anti-social, those charges can really add up.

All of this is, obviously, hella expensive.  Although Medicaid is available in theory, it may not be in fact.  Medicaid rules vary by state.  Most memory care facilities require you pay the full private rate out-of-pocket for the first two years of residency, and will demand detailed financials proving you can cover the cost as a condition of admission. After that, you’ll have to “spend down” assets – selling the parents’ house, draining all their savings – until Mom or Dad meets your state’s Medicaid eligibility threshold. And after that? Well, just pray you can find a bed.  In New Jersey, for instance, facilities are required to set aside ten percent of units for Medicaid clients, which seems generous until you realize how quickly family finances are decimated paying for care.  The demand for Medicaid units, at least in decent facilities, outstrips the supply.

Generally speaking, a home healthcare aide is more affordable.  We could have employed an aide for my mom directly off Care.com at around $20 to $25 an hour; instead, we elected to use a home healthcare service for $37 an hour, figuring the extra cost was worth the assurance the service would send a replacement any day the aide couldn’t make it.  Even so, there are drawbacks.  Legally, the home healthcare aide can’t administer my mom’s meds – she can only remind her to take them.  And should my mom ever need true nursing, or 24-supervision due to dementia-fueled wandering or risk of falls, then an aide will no longer cut it.

So how do you care for a cognitively disabled loved one in the face of such costs? You improvise.

Maybe that means engaging in a bit of performance art.  Many choose to engage in the legal fiction of transferring all of an elder’s assets to a family member, such that the elder looks “poor on paper”, thereby qualifying him for a Medicaid bed in memory care.  The estate planning attorneys I know recommend this approach.  By its very nature, however, this demands a high degree of trust between the elder and the family member, usually a child.  If your parents are, like mine, old-school WASPs, steeped in the “every man for himself” mindset, it’s a harder sell. 

Not surprisingly, I’ve been told the asset transfer fiction is popular among recent immigrants.  Of course: For newer Americans, the family economy is the norm. They think nothing of pooling intergenerational assets to buy homes, start businesses, or fund educations. To pay for dementia, we’d do well to follow immigrants’ lead and start thinking of our family networks as economic units, at least for as long as Medicaid rules focus solely upon what the claimant owns. (In the future of The Mandibles, Medicaid eligibility will require that children of claimants drain their assets as well.  Given the number of Boomers, I expect this is coming.).

Then there’s the tougher improvisation, the one engaged in by those who aren’t poor enough to qualify for Medicaid or, if they do, can’t find a place in a reputable memory care facility – the kind where you don’t have to fret about bedsores or less-than-friendly attendants.  This improvisation means quitting one’s job to provide personal care for one’s parent, even if it entails living with the parent under one roof.  I’ve known those who took this route.  For some, it is a source of great satisfaction and meaning.  For others, it is an ordeal. Dementia, after all, can result in behaviors entirely at odds with the mother or father you once knew: food-throwing, paranoid delusions, obscenities ranging from raunchy talk to open and enthusiastic masturbation. On my Target run, the checkout clerk’s eyes welled with tears as she related how she was re-employed after having to take off months of work to care for her mother with Alzheimer’s.  “It’s a terrible disease,” she said, shaking her head.

Zombie movies and TV series – think The Walking Dead and The Last of Us – have been a popular staple for the past couple of decades, and I have a pet theory why.  It’s because we all, on some level, recognize modern life is increasingly about a battle for scarce resources: Affordable housing, affordable education, a freakin’ neurologist to diagnose mom’s dementia, for God’s sake.  We all, on some level, recognize our governments will address these scarcities in ways that are ineffective and flawed and, for some of us, even a little ghoulish (see, e.g., the recent expansion of Canada’s MAID program to include the mentally ill, which I believe is pre-emptive response to the projected increase in the number of those living with dementia). And we all, on some level, recognize that to secure these resources will require vigilance, cunning, and a willingness to fight like Daryl Dixon felling the hungry undead with his trusty cross-bow.

It will require we improvise those so-called “Golden Years.”

God and the Grotesque

After my Dad had been in memory care a week, I headed over to visit him.  The anti-psychotics they gave him had dulled his anxiety and paranoia.  He seemed sleepy but half-cognizant, as if he somehow spied the truth lurking on the other side of the haze.

“I know my mind is going,” he said.  “It’s like reaching deep into a closet and nothing’s there.” When he looked at me, his eyes were dim but searching.  “I don’t understand why this is happening.”

“I don’t either, Dad.”

He paused, then asked: “Can you tell me your mother’s name?”

I told him, then held his hand as he began to cry.

Two weeks later, he was gone.  I returned to the memory care facility to clear out his room. As I was packing his things, another resident wandered in.  The brochures for memory care are full of adorable seniors, spry silver foxes doing armchair aerobics or planting begonias in the facility garden.  Actual residents, however, aren’t nearly so photogenic.  The woman facing me was emaciated, with long, witchy gray hair, wearing a summer dress inside-out and backwards over a pair of frayed sweatpants.

“It’s the funniest thing, isn’t it?” she said, vacantly.

“Pardon?”

“It’s the funniest thing,” she repeated, pointing at the window behind me.  “I mean, have you ever seen anything like it?”

I turned and glanced out the window, which faced a parking lot, studded with a few nondescript shrubs. 

“Never,” I replied.

Already, I felt myself passing through the looking-glass: A slight unease, followed by a dislocated sense of time and place, like waking up in a foreign country after a long flight.

I zipped up my father’s suitcase and left the room with her, heading towards the front lobby.

“La, la, la,” she sang, in a lilting, wordless melody.  Then halfway down the hall she stopped abruptly and turned to me, the vagueness in her eyes dispelled.  “I sang choir for twenty years in a Catholic Church.  I was really good.”

“I bet you were.” 

She resumed singing and, to my surprise, took my hand.  To my greater surprise, I began swinging her hand back and forth, as if we were grade-school chums. I was singing, too, and soon our voices blended in what sounded suspiciously like God Rest Ye Merry Gentleman, even though it was March. 

And that is how I exited my father’s memory care for the very last time: by improvising reality.  Given the incidence of dementia on both sides of my family, a part of me recoiled at being confronted by my likely future, in the form of a bony old woman with a quivery soprano. But instead of politely excusing myself from my future, I clasped hands and joined voices with it. I walked past the dragon of my worst fear; I participated in The Grotesque that is dementia without shrinking. And although I may just be comforting myself, I think I caught a little glimpse of God along the way.

The exit door was – as in all memory care facilities – securely locked and I had to buzz for permission to leave.  It was time to say good-bye to my new friend.

“See you!” I told her, releasing her hand. Then impulsively, I added: “Love you!”

“Love you, too,” she responded.  It was rote and meaningless and yet meant everything.

It’s the funniest thing, isn’t it?