End-of-Life Sentence to Institutional Care & Confinement: The Nursing Home

By Benjamin E. Ruark

When one’s health care needs reach a tipping point, whereby 24/7 access to immediate healthcare staff become a grudging reality, one’s life has just upended beyond all notions of fair and impartial. Sadly, loss of health was not only your get-in-jail (institutional life) free card, it underscores a whirlwind of losses in a number of routine existence/coping areas. The acronym, smash cars, odd as it sounds against the current context, effectively spells them out. Beginning with smash: s-loss or decline of normal sensory capabilities, mainly hearing and sight; m-loss of memory (beginning with proper nouns); a-loss of a routine personal agenda, how you intend your day to unfold; s-loss of status conferred by roles formerly served on the ‘outside;’ h-home, that place where so much of our identity and life purpose permeate every square inch.

The cars segment of losses includes: c-control over all things that define us, from the most minuscule to substantive matters; a-autonomy over self-governing of our lives, including our rights and privileges as humans and Americans; r-loss, reductions, and changes to familial, social, and work relationships; and s-the loss of spontaneity that has been a natural, blissful fact since childhood. And now, suddenly being faced with various staccato traumas of infringement on one’s rights at every step during intake processing. Of increasing control over one’s physical, psychological, and emotional well-being; or frankly, accustomed way of life. As caregiver after caregiver explicitly and implicitly declares his or her expectations for each newly-installed resident’s personal conduct and spirit of compliance.

It was stated in an article on the Internet that internal LOC (locus of control) individuals find extremely problematic, literally, is adjusting to spending their remaining days in a nursing home. ‘LOC’ refers to the origin of where their life-destiny gets determined. External LOCs believe that environmental events, people of authority, chance, and reality’s no-nonsense ways all have a voice in controlling their next moment’s outcome. Internal LOCs, on the other hand, believe their own efforts, abilities, and self-determination are chiefly in control of the outcomes they typically experience. Without passing judgment, the latter tend to achieve greater personal satisfaction over achievements accrued, opportunities mastered, and the inspiring trajectory their life has taken.

Whether the report about internal LOCs’ fabled clash with nursing homes being backed by research is true or not, logic alone affirms this view. Lending substantial validity is the observation that many lifestyle variables are liberally reduced to their LCD, their lowest common denominator, once one has settled in to nursing home life. Akin to the maxim, a chain’s no stronger than its weakest link, nursing homes apparently believe likewise: lowering their expectations about seniors’ levels of stamina, individual rights, entitled freedoms, mental and emotional health, physical needs, coping skills, and so on. Applying as their rule-of-thumb, or operating heuristic, their very own crafted complement of facility-based LCDs; or put another way, worst-case scenarios for their residents, and where one size surely fits all.

LCD on Individual Rights, Dignity, and Freedoms

Privacy and dignity are viewed as luxuries permanently in short supply. Reduced to their minimal intrusiveness, respect for privacy and dignity in nursing homes mistakenly mimics that found in hospital stays. Under an operating mindset that views theirs as ‘a workplace where customers just happen to reside,’ economy of scale and convenience are foremost in staff’s vision of how to conduct business. Thus they callously discuss residents’ medical issues, medications, symptoms, side effects, bodily functions, and personal fears and concerns over aging and debilitation, etc., in such public/semi-public locations as: nursing stations, commons, dayrooms, in hallways, dining rooms, courtyards, private and semi-private rooms, etc. The onus on residents to self-advocate by being explicit about where and to what extent their privacy is to be respected.

With size of living quarters the equivalent of a studio apartment, sans the kitchenette, the only thing separating a call from nature and one’s neighbor is maybe ten feet of intimate space between them and you, and a door with an inch/two of clearance underneath. Never were noise-cancelling headphones so cherished.

For clothes-changing, application of topical pain relievers, affixing a prosthetic, and so on, a curtain is pulled around one’s bed. If an aide is required for emotional support, or simply being on standby while taking care of bodily functions, s/he’ll happily stand just inside the restroom door and talk the resident through it. Residents do have a say about need for privacy v. assistance when on the throne. If they’re still functioning much like an independent, then showering alone may be possible, with an aide located outside a curtain or shower room door; the rationale being ‘in case they should slip and fall.’ 

It’s more a matter of personal level of comfort regarding nudity in front of people whom one singly knows in the role of aide; and the somehow trying and salient fact that they’re mainly high school (or less) graduates with too-few weeks of workshop training that earned them their certification. Professionalism, ethics, social skills, and the intricate nuances and subtleties of handling interpersonal situations where one person’s clothed, the other isn’t—more like graduate school level topics—well, those just aren’t listed anywhere, much less at the top, in the scant curriculum that turns a jobless person on the street into a nursing home aide. 

However, when one is viewed more/less as the ‘Property of Sagebrush Nursing Home,’ showering’s as efficient as running one’s car through the car wash. The aide is the same as the guy who makes sure the spray guns and giant roller brushes are all working fine; he’s there in case something goes wrong. Or when ‘detailing is needed: i.e., residents suffering from dementia and/or severe physical disability require an extra pair of hands: soaped down, scrubbed, rinsed, and dried.

Freedoms such as uninterrupted TV viewing (again, LCD: equivalent of cheap-motel package, basic cable/satellite programming) are considered an extravagance not to be had. Likewise with reading and napping. Invasion is as commonplace as breathing. Spontaneity regarding leisure-time activities depends on what’s available and the moment in time one wants to engage in it. Otherwise, unit-wide activities are scheduled by the month. Show or no show, one does have a voice about attending. 

Freedom and dignity surrounding the taking of medications is another matter. Chance favors a job title of no less than a nurse typically standing overhead, looking down and watching closely to make sure the seated or bedridden resident isn’t faking when taking his/her meds. Indeed, there’s bobbing Adam’s-apple proof of having swallowed them. Because some feeble and perhaps cognitively-impaired residents do resist taking theirs meds. The LCD translation of that fact is that all residents shall be treated as children and closely supervised. Usually to the perceptible embarrassment of both nurse and resident.

The seemingly small freedom of ‘do not disturb’ gets exponentially blown to incredible proportions by staff going about their maximally-obtrusive business: when least expected, an aide drops by with an oddball question; or an activities director has an invite (drumming up a sufficient number of their captive facility audience for some scheduled activity); or a nurse with a little spare time decides to take vitals on a few residents to update their charts. And let’s not forget resident preference for a little quiet time to take care of nature’s business: which poses high risk of total blitzing by a rapping on the restroom door either by an aide or next-door-neighbor, wanting access.

Caution advises never being caught half-/fully-undressed at a certain time segment during normal daytime operations. Because, as sure as the sun rises, a knock will come to one’s door and there’s no need to reply. Before a single ‘Enter’ can pass from one’s lips, the door will swing open, followed by a singsong ’Ello! The fricative h being silenced. And a Russian immigrant under the employ of Housecleaning will bolt through without invitation. She’ll head for a wastebasket, remove the trash in its plastic liner; install a fresh one, and drop it, tied, outside the door. Turning to face the resident, this physically and behaviorally stout icon of institutional dogma will utter through chipmunk’s cheeks, “Floor mop, gude? Today? Tomorrow?” 

Meaning, is it okay to mop your floor? And would you prefer it be today or tomorrow? The standard retort being, “Good. Today’s fine.” But there was so much unspoken in that simple clipped plebeian exchange: ‘I must be allowed in. I work for institution. Don’t interfere [with] my work. I must do [my] work, as told. My time [is] not [to be] wasted.’ But it is more than okay, even reverentially proper in her head, to pop in unannounced and disturb a resident at an institutionally opportune time. See, that’s the rub: there isn’t one ephemeral fragment of ‘home,’ anywhere, inside the walls of a nursing-home facility in America.

The freedoms of personal wakeup and bedtime get subjugated under the (human warehousing) proposition that when it comes to serving large numbers of people, ‘one-and-the-same’ triumphantly trumps ‘when my mood strikes.’ Freedom of speech also has surplus limitations: utterance of words such as ‘wish I were dead,’ ‘don’t want to live like this,’ and ‘can’t take this, anymore,’ are likely to win one a free 24-hour aide escort with a 72-hour personal watch affixed. Also, vocalized complaints about irritating neighbors must not be rashly crafted. If they sound threatening—no matter any humorous intonation behind them—they’ll likely prompt the relocation of said irritant neighbor to another unit, followed by a few reproving words for conceivably posing oneself as a perceived threat.

LCD on Autonomy and Status

Autonomy doesn’t even allow one to administer their own eye drops. That would require special approval so-noted on a resident’s chart. Medications typically get dispensed during specified time windows, not by personal request. If a resident has special needs—such as sensitive stomach lining, requiring meds only be taken with meals—that could result in intermittent instances of human error: by individual staff-person, by shift, by weekend  v. weekday crew. The group mindset is one of accomplishing their many federally-regulated duties in batches or lots set within fairly loose time windows. Again, LCD rules. To start injecting special requests in their system of work alters the whole calculus of volumetric caregiving. 

In a longtime practiced, multitasking-rich environment—where human error ‘expectedly’ introduces high risk—special needs compound the probability for error. “Expectedly’ is used intentionally because this is one industry where they still subscribe to the archaic belief that ‘to err is human and therefore cannot be avoided.’ Vestiges of learned helplessness.

Another LCD-prone practice is responding to each patient as if s/he were the origin of LCD, The Most Impaired/Most Needy. Meaning, each resident is addressed at several decibels above normal street level; is addressed in words and tone used when explaining to a child; is broken-record prodded with ‘okay?’ for every procedure performed or described, and for informing them what’s to be expected from a medication, or what a resident’s expected to do, regarding their treatment regimen. It’s also commonplace to be told that an errand so requested will be handled shortly. Only it likely won’t; staff interruptions are frequent. Hence, a request is either prey to forgetfulness or being postponed. Worse still, that request is unlikely to get passed on to another staff-person to ensure it’s handled in a timely fashion.

Status-wise, regardless of a personal history that might be steeped in impressive achievements and the awards and luminary reputation to back them, as an ordinary resident expect fancy-named meals designed to surprise via two extremes: spicy-overkill and pure-bland. Expect incoming laundry to be as, or more, wrinkled than it was, outgoing. Expect an acoustic jungle to fill daytime hours, rife with its own eerie cacophony of human sounds of grief, pain, misery, aimless fear, and physical discomfort: the percussion section. Expect clashing TV volumes, discourteously loud neighbors, and a frequently borderline-raucous staff to occupy the brass section. Occasionally, a resident suffering from dementia with associated anxiety will unwitting supply high-piercing sounds from an otherwise isolated woodwind section. The string section—preferred most of all—is not only disembodied but regrettably nonexistent.

LCD on Agenda and Control

Personal agenda has assumed a new and minor definition: to nap or not to nap. As facility property the daily agenda’s preset. An aide will even make sure residents are at a slotted venue at the set time. Scheduled clinic appointments aside, anything personally desired would fall under catch-as-catch-can.

Control, that most human and treasured of rudimentary life essentials, has been seized by the work culture. Laundry gets delivered when laundry gets delivered. Meals get served when meals get served. Same with medication. Ditto for showers. No difference from Activities. Mail delivery has no surprises. The pattern speaks for itself.

LCD on Sense-of-Home

Somehow the family photos and artifacts from home don’t pull it off. The busy hive of a healthcare-frenzied workplace, roaring to full throttle, most effortlessly dowses whatever flicker of home-life that might greet each new morning before one’s eyes fully open. Clearly robbed of their own imagination and empathy, developers, architects, and especially corporate owners—aided and abetted by operations management—will predictably fall a galaxy or two short of making such a place genuinely home-like. At most, a resident here and there might succumb to bonding with a subgroup of fellow residents of similar backgrounds, tastes, knowledge domains, and health issues. And call them his/her new family, and resign him-/ herself—regardless of external or internal LOC—to this final leg of life under the tireless grip of institutional reality.